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UNCORRECTED TRANSCRIPT OF ORAL EVIDENCE To be published as HC 815-ii House of COMMONS MINUTES OF EVIDENCE TAKEN BEFORE HEALTH COMMITTEE
Thursday 2 February 2006 DR ANTHONY HARRISON, MR ROBERT DARRACOTT, DR ELLEN SCHAFHEUTLE and DR HAMISH MELDRUM MS PAULINE THOMPSON, MS LIZ PHELPS and MR MARTIN RATHFELDER MR PETER CARDY, MR ROBERT MEADOWCROFT, MRS ROSIE BARNES, MS LYNSEY BESWICK and MS MOIRA FRASER Evidence heard in Public Questions 138 - 298
USE OF THE TRANSCRIPT
Oral Evidence Taken before the Health Committee on Thursday 2 February 2006 Members present Mr Kevin Barron, in the Chair Mr David Amess Charlotte Atkins Mr Paul Burstow Mr Ronnie Campbell Jim Dowd Anne Milton Dr Doug Naysmith Dr Howard Stoate Dr Richard Taylor ________________ Witnesses: Dr Anthony Harrison, King's Fund, Mr Robert Darracott, Head of Corporate and Strategic Affairs, Royal Pharmaceutical Society of Great Britain, Dr Ellen Schafheutle, Research Fellow and Pharmacist, Drug Usage and Pharmacy Practice Group, Dr Hamish Meldrum, Chairman of the BMA's General Practitioners Committee, British Medical Association, gave evidence. Q138 Chairman: Good morning. Could I welcome you to our second evidence session on our inquiry into NHS charges. I wonder if you would mind introducing yourselves for the record. Dr Schafheutle: My name is Ellen Schafheutle. I am from the University of Manchester. My colleague Peter Noyce and I have submitted written evidence. Dr Meldrum: I am Hamish Meldrum. I am a GP in Bridlington in east Yorkshire and I am Chairman of the GPs' Committee of the BMA. Dr Harrison: I am Tony Harrison. I am a Research Fellow at the King's Fund. Mr Darracott: I am Robert Darracott. I am Director of Corporate and Strategic Developments at the Royal Pharmaceutical Society. I am responsible for our Policy Unit. Q139 Chairman: Thank you. Apart from raising revenue, what contribution do charges make to health policy? Dr Schafheutle: It is about £450 million that comes from prescription charges. That only makes up about 5.5% of the total net ingredient cost of all NHS prescribed items and that is due to a high number of prescriptions actually being exempt. Around about 13% of our items are exempt from prescription charges. There is no real data available on the cost of administering the current system of prescription charges and exemptions. In Scotland a figure of £1.5 million was quoted. I have gone through some of the Hansard records of last year and tried to tot up some of the figures there and it came to around about £6.5 million, but that is a really rough guestimate. Dr Meldrum: Apart from a financial contribution, my own view is there is little evidence of any beneficial contribution to health. There may be some evidence that it may reduce a little bit of inappropriate demand. I think the downsides of the present system far outweigh that small potential benefit. Dr Harrison: I cannot really enlarge on that. I cannot say what contribution charges make to any health policy objectives. They are inconsistent with objectives which the Government has vigorously promoted. Let me make just a small point on inappropriate use. I think the general evidence, not in this country but where the effect on appropriate and inappropriate use has been tested, suggests that both are affected by charges. So charges do not distinguish between frivolous or inappropriate or unnecessary use, they are too blunt an instrument to do that. Mr Darracott: Based on the examples where effectively charges are being removed and the evidence we quoted in our paper of Italy in 2001, there was a large increase in the number of prescriptions that year. I was involved in some work in Italy at the time. In the January that the charges were removed prescription numbers increased by 18% and they increased so rapidly that charges were reintroduced nine months later. Every system is a dynamic one. It would be wrong to extrapolate too far from that. It is not just about frivolous use, it is about who does not get the benefit of medicines they really need. Q140 Chairman: In terms of health policy objectives, we are seeing some changes taking place at the moment. We have had proposals earlier this week and many others about this concept of moving care out of hospitals into the community. Are there any issues around that in terms of NHS charges that you can tell us about? I think all four of you agree it does not steer policy one way or another. Does it hinder policy? Dr Meldrum: I think it probably does in that some of the most hard to reach people and the people who you would want to try and attract for treatment are affected by charges and are dissuaded. As others have said, it is a blunt instrument. I think we have quite a lot of evidence, both from research and also personal evidence, of people who will ask me, "Do I really need all three of these, Dr? I really can't afford them. Which are the two most important ones?" That is the ones who are upfront with me. I know plenty of others who then ask the pharmacists the same question or who actually just do not cash in the prescription. I carry on in the ignorance that I think they are taking it and they do not want to upset me by telling me they are not. I think, because we are trying to look at more preventative measures in the announcements this week and focus more on that and to try and focus on under-privileged areas, the previously hard to reach places, the present prescription charges can only tend to act against that. Q141 Charlotte Atkins: Mr Darracott, based on what you said earlier and also on your evidence, you quote various international studies about the deterrent effect of charges, what evidence is there out there in terms of the detailed evidence? Mr Darracott: The Society's review of the available evidence was done in large part by Dr Harrison. What that evidence concluded is that the evidence in this country is fairly sketchy. We collected together the evidence that was available from around the world on lots of different sorts of systems, whether they were fixed charge systems, annual maximum systems or various forms of co-payments or co-insurance. There is evidence around but it is fairly fragmented and it may only look at a particular category of patient. There are some very interesting studies which suggest that the very vulnerable types of people and those who are a focus for government policy are the sorts who are inordinately affected by this sort of work. For example, one of the stories we quoted was looking at some people with mental health problems in the US, where a cap on the amount of costs which could be allowed in any patient case actually led to an increase in hospitalization and the economic examination then suggested that the total excess costs were 17 times the cost saved by putting the cap on in the first place. The other thing that is very interesting and why this particular inquiry is very timely is that we have a live experiment going on at the moment in Wales and although we are only part-way through what is a stepped programme for the removal of charges to the people in Wales, we are now at £4 and we are going to go down to £3 in April, there is evidence now beginning to emerge on how that is affecting the number of prescriptions that is actually coming through. There is evidence around and we have tried to summarise a lot of it, but in this country, apart from some other work done at Manchester, there is not a lot. Q142 Charlotte Atkins: The Committee will be taking evidence on Wales. I am interested in why there is not any evidence in this country. It is not as though we have not had prescription charges for quite a long time. Why is that? Has the work not been done or is it not easy to collect? What is the issue? Dr Harrison: There is evidence about the impact of charges on the uptake of prescriptions. Where we lack evidence is on what the further impact of that is. As Rob mentioned, a particular study done elsewhere suggested that the impact could be very considerable. Other studies have confirmed that hospital admissions may rise as a result of people not taking up prescriptions because of costs and they may find themselves going to their GP or doctor more frequently. Those overarching studies just have not been done in the UK. A few studies were done on the impact of charges over the years in the Sixties and so on. So we can be fairly confident that charges do deter some people and, as Rob has already said, mainly it is people at the lower end of the income scale, although it is not those right at the bottom. Q143 Charlotte Atkins: The indication that there have not been any studies done implies to me that there is not a big issue here. Dr Harrison: Other people - and I think they will be giving evidence probably later on this morning - have collected evidence directly from individuals who say they cannot afford three prescriptions at one and the same time, and Dr Schafheutle has done a lot of work on the way people and professionals react to the existence of charges. So that work has been done and it is strong enough to suggest that there is an issue. What we could do with are some more comprehensive and wide-ranging studies than we have ever had in this country which do trace the impact of charges through to what happens to those who do not take up their medicine, who do get a prescription in the first place and they spin out the prescriptions, ie making them last longer than they should and all those effects. What is the consequence of that on health, hospital admissions and other use of services? That is what needs to be done. Q144 Charlotte Atkins: Maybe Dr Meldrum can help us here. Have you picked up if there is a regional dimension to the impact of charges? One might think that maybe in more prosperous regions there is not such an issue and in poorer areas there is. Have you picked anything up from your experience? Dr Meldrum: I recognise your anxiety about the lack of evidence. I think some of the reason for that is that so many who are close to it feel the whole system is so patently inappropriate, the anomalies within it, who is exempted and why they are exempted, so why spend a lot of money on doing evidence when something seems so obviously wrong. Q145 Charlotte Atkins: Some of us believe we should have evidence. Dr Meldrum: Absolutely, and as doctors we would go along with that too. In terms of effects in different areas, certainly within a practice one knows that there is a certain group of patients - not those right at the bottom end who are often on support and therefore exempt from prescription charges - just on the threshold where there is a real impact on the uptake and the use of medicines. They are the ones who complain most about having prescriptions and also wanting prescriptions to be given for six months at a time so they only have to pay the prescription charges much less frequently and various other things. So doctors are often under quite a bit of pressure to try and play the system in order to reduce the financial impact on patients. Q146 Charlotte Atkins: What you are saying is that the group that is most affected is those just on the edge, is it not? Dr Meldrum: Yes. Q147 Charlotte Atkins: If you were to look at the overall figures - and I am sure the Department of Health would say this - you would see that only a small fraction of the population pays for prescription charges. So is it a big issue? Dr Meldrum: Yes, 85% of prescriptions are exempt, but that does not mean to say 85% of people are exempt and for those who are not exempt it is a very big impact. Yes, we can argue that because all the young and all the elderly are exempt - and particularly in the elderly that is where the bulk of prescriptions are - that is not a problem, but of course you are exempt whether you are elderly and a millionaire or a pauper. It is those in between who have to pay where the biggest impact is and often it is at a stage in their life when you can make quite a big impact on them if you treat them adequately. Q148 Charlotte Atkins: You pointed out it is the percentage of prescriptions we are talking about here. Is there any evidence about the percentage of people who are ill, who regularly take prescriptions and who are not exempt? Dr Meldrum: I cannot put a figure on it. Most of my evidence in that sense is anecdotal. In terms of the number of occasions when patients complain to me about the number of prescriptions which are necessary and whether they can have them for longer periods, that is a very frequent occurrence, and I have found from talking to colleagues that that happens very frequently. Q149 Charlotte Atkins: When you say frequently, do you mean at every surgery or once a week? Dr Meldrum: Once or twice a week. Q150 Charlotte Atkins: Is there any evidence that anyone else would like to bring in on this issue? Dr Schafheutle: I would like to pick up on the last point about patients talking to their GPs and raising the issue of affordability. Based on the work that we have done at Manchester, it seems that a lot of people do not raise the problems they may have about affordability with their GPs as they do not see it as a doctor's job to address those issues. A lot of people who find the cost of prescription charges to be a problem do not speak to their GP, but they may speak a little bit more to their pharmacist because that is the point at which they have to hand over the money, although a lot of it just goes on without any awareness. The things that the GPs and the pharmacists see are probably an under-estimate of what goes on. Q151 Charlotte Atkins: Have there been any studies to tease this out? Dr Schafheutle: We have done some work to look at the non-dispensing at the point where people pick up their prescription in commuter pharmacies to see what the impact is and how much cost comes into this and how much other reasons play a part and it is quite clear from that that for those that have to pay cost is quite an important impact. There are other factors that come into play in people not picking up their prescriptions. A large percentage of those that are cost related are where people can buy something over the counter. So there are quite a few cases where adequate substitution takes place because an over-the-counter product is cheaper than a prescription charge, but there are still a number of prescriptions that would be deemed as necessary or clinically important that people do not get dispensed because they cannot afford the prescription charge. Q152 Dr Stoate: I think we can all agree from the initial answers to the questions that the current system is dog's breakfast. It is a question of where we go from there. I would like to pick up one or two points about health policy. None of you seem to have had much enthusiasm for any advantage to health policy. Is it not part of government policy that we should be encouraging people to use pharmacies? Is there not some evidence that a prescription charge might encourage somebody to go to their pharmacist before going to their GP and getting something over the counter that they might otherwise queue in their GP's surgery to get? Is that not at least a potential advantage in terms of policy? Mr Darracott: Yes, it is potentially. The figures that we uncovered showed that for every 1% increase in charges there is a 0.3% decrease in the number of items. You are absolutely right in that a number of strands of government policy are promoting that. Not only is there a visible encouragement of people to access pharmacies, but behind that sits a policy to examine particular medicines and to decide, for those that are safe and effective, to move them from a prescription category and into a pharmacy category and therefore widening the range of products that is available in that way. Yes, that is an important part of it. We have had the system now that we have got 40 years with all its illogicalities. I do not think it has been teased out as to what the impact of that is on this specifically. Q153 Dr Stoate: At least potentially you could argue that there could be an advantage to government policy if more people saw the pharmacy as appropriate for them rather than waiting to have an appointment with their GP. Mr Darracott: Yes. There has been an encouragement of what is called the Minor Ailment Scheme in which people who are exempt from charges, who require advice on something that you put into that category can go directly to the pharmacy and yet will be treated in the normal charging regime and obtain the medicines they need without paying for it because they are automatically exempt. There are a number of strands of policy which are supporting that. Q154 Dr Stoate: Hamish, you have talked already about the inappropriate use of GPs' surgeries. There may be inappropriate consultations for a number of reasons. You have already said you do not believe charges are a very good method of deterring inappropriate consultations. If we can agree that such consultations exist, how would you feel the best way of tackling them is? Dr Meldrum: How do you make sure that people use the health services most appropriately? That is mainly about education. At the moment it works both ways with prescription charges. I get people coming to me rather than going to the chemist when their child is sick because they can get free Calpol whereas they should really be going to the chemist when he has just got the sniffles or a cold. The prescription charges are a pretty blunt instrument in terms of trying to implement what I would think is cohesive and comprehensive health policy. I do not think I would be saying we should just abolish prescription charges and do nothing else. You would also have to look at the system, which would encourage people to make use of pharmacists and perhaps have voucher systems for those who would otherwise have to pay. We have talked about pharmacy prescribing. The BMA is actually supportive of pharmacy prescribing for minor ailments and such like. There are other ways to try to address this to avoid inappropriate use of various parts of the Health Service and I think it should be mainly done by education rather than by a rather crude tax, which is what the prescription charges are. Q155 Dr Stoate: Dr Schafheutle, has any research been done on whether costs elsewhere in the Health Service are increased purely by having charges in the system? If somebody has to pay and does not get their medication, have we any way of measuring what knock-on effect that might have on other Health Service costs? Dr Schafheutle: Unfortunately not in the UK. That evidence is not available for a number of reasons. We have evidence from the United States and also from Canada where a very, very large scale study looked at the impact of co-payments on particularly vulnerable groups, which were the elderly and welfare recipients in that country, and they found they reduced their use of essential medication and that had a direct impact on their use. This was a cost-related impact and therefore it had an impact on the increased use of acute services, emergency department admissions, admissions to hospital and also increased mortality, which they linked directly back to an increase in co-payments in those vulnerable groups. Q156 Dr Stoate: Is it not rather important to know that figure? If it turned out the figure was £450 million a year it would rather wipe out the whole benefit of prescription charges in the first place. Is it not rather important we do that research? Dr Schafheutle: It is. The problem is the lack of evidence. In Canada and the United States it is generally much easier to access large datasets through their insurance schemes like Medicare and Medicaid who reimburse patients and they hold a lot of information about those patients and so they can relatively easily assess the compliance of people, how often they refill, what kind of conditions they have and draw conclusions from that. We do not have one available dataset that we can access to set up that kind of study in the UK. In GPs' surgeries and often in pharmacies we do not hold the information on whether somebody pays or not. Q157 Dr Stoate: That is remarkable. The GP dataset is probably the most comprehensive in the world in terms of the fact that every single prescription is logged on the computer now. Surely that data must be incredibly easy to access. Dr Schafheutle: That data is probably not so difficult to access. It is linking it with whether somebody pays or not that is the difficulty. Q158 Dr Stoate: That cannot be rocket science, can it? It is very simple to work out if somebody pays. Dr Meldrum: It is simple in terms of the age ones, but there are many other exemption categories as you know. As a GP, I will not always know who pays certainly within the age group of 16 to 60. Q159 Mr Burstow: I want to ask about the research that you have done, Dr Schafheutle, and how that looks at the current system of exemptions and what effects prescription charges are having on patients. What kind of things has the research revealed so far? Dr Schafheutle: Over the years we have been involved in a number of studies. It began with a European study that involved six countries all looking at the impact of the different co-payment systems in their countries and obviously we were particularly involved with the UK side of things. We did focus groups with patients and that included people with hypertension, HRT, hay fever or dyspepsia, and then we developed a survey of people who had to pay for their prescriptions in the UK. Then we did a study on non-dispensing that I mentioned earlier. More recently, as part of my post-doctoral Fellowship, I have been doing interviews with people who have asthma or people who have coronary heart disease or who suffer from high blood pressure. From all of that research we found people do a number of things. If prescription charges are a problem - and we have shown that they are a problem - and if people are below the average income then they use a lot more strategies to cope with costs, whereas those that are on higher incomes do not need to use those strategies to cope with costs. First of all, it prevents people from going to their general practitioner because they assume it is going to end up in a prescription and that is going to cost them a lot of money. The next step is not to get a prescription dispensed. If somebody has a number of items on their prescription then that adds up - the current cost of one item is £6.50 - to rather a lot of money for somebody on a relatively low income and so people try and prioritise. Some of them will ask their GP or their pharmacist about it or they will decide which one they need the most without that input. An example of that is asthma inhalers, where people take a preventer and a reliever and then choose the reliever at the expense of having their asthma controlled well. Some people may use a lower dose to make their medication stretch over a longer period of time and in some cases that may not be a problem, but if it is a problem they may borrow money from friends or family, they may use somebody else's medicine or they will delay it until they have the money available. One mechanism that is available for people to use is the Pre-payment Certificate which they can buy either to cover their medication for four months or for 12 months. We have identified a number of problems with this and the Citizens Advice Bureau research has identified very similar issues for those people on low incomes, the ones that most need protection against affordability issues, in that the lump sum payment of these Pre-payment Certificates can be a real problem. So paying out in advance over £30 for four months or over £90 for 12 months is actually a real issue. Something else we have identified is the predictability of certain conditions. After somebody has a heart attack, for example, they are normally on a lot of medication which is prescribed on a monthly basis, so it is very obvious to them that they will benefit from having a Pre-payment Certificate and it is very obvious to the GP and the pharmacist that would then recommend these certificates. On the other hand, there are conditions - and again I come back to asthma - where this is a lot less predictable. Very often for people who are feeling generally well and who pick up their inhalers every six weeks getting a Pre-payment Certificate is just not worth their while. They do not know when they are going to have an infection that may require antibiotics and when it is not clearing they may need another course of antibiotics or they may need a course of steroids. These individual charges add up very quickly. There is no way for them to go back and say, "Over the last four months I have paid out far more than this £30". That is another thing that we have identified as a problem. Q160 Mr Burstow: I want to come back to the point about evidence and datasets and so on. You have described the focus group work, the qualitative work, the case study-type work that has been done which illuminates the issues. Do the datasets that would be necessary to do the work that has been done in Canada and the US exist in the UK and, if not, where are the gaps? Maybe that is something you can come back to us on if not now. Dr Schafheutle: I would probably need to come back to you on that. Q161 Mr Burstow: Dr Meldrum, your evidence suggests that the list of exempt items is out-of-date in terms of the burden of disease as it is now. I just wondered if you could say a bit about what changes you think are necessary and particularly what sort of criteria we need to use to make decisions about what conditions should be added to the list and what conditions should be taken off the list. Dr Meldrum: Where do I start? There are so many anomalies both between diseases and even within diseases. Diabetes is a classic one. If you have diabetes but can control it by your diet you are not prescription exempt whereas if you need tablets or insulin you are, but even diabetics on the right diets nowadays should probably be on an ACE inhibitor, a statin, an aspirin and other things. They are going to need a sizeable amount of medication but they do not get that. If you happen to have an under-active thyroid at any time in your life and you are required to take Thyroxin you are prescription exempt for everything. Somebody who happened to have an under-active thyroid at 20 and who turns out to be hypertensive in their 30s or 40s gets free medication. Somebody else who just becomes hypertensive and did not have the fortune to have an under-active thyroid does not, they pay. We have talked about conditions and my colleague mentioned asthma. Often a condition requires quite a large number of drugs now and if treated effectively it can help reduce hospital admissions and improve the quality of life, but it is not exempt and it is often a condition affecting the young and young adults. Increasingly now we are seeing hypertension, we are seeing heart problems, all of which there are good therapies for which will help prevent further complications in later life and these people are not exempt. Q162 Mr Burstow: Have you put these concerns about how the system works and arguably the diversities in the way the system works to the Government and, if so, what response have you had from the Government? Dr Meldrum: Frequently. Every government in the last 30 years has probably seen that. Q163 Mr Burstow: Has the response changed over those 30 years? Dr Meldrum: The response tends to be "We're looking at it and we'll get back to you". That is why it is quite refreshing to see somebody like yourselves taking a real close look at this because I think we would feel that the response so far is just too complicated to touch and we do not really want to change things. Q164 Mr Burstow: In written answers the Department has said that the reason there has not been a change is because there is no consensus about what the change should be outside of the Department. Is that a fair characterisation of the position from your discussions with other organisations and certainly some of the others who are giving evidence to us today? Dr Meldrum: I think it would be fair to say that to try to achieve a consensus and get a system that was totally logical and that stood the test of time would be quite difficult. There might be an argument for saying that rather than trying to look at conditions which should be exempt you should perhaps look at drugs which should be exempt. There might be more logic in that because it might be better for important drugs that were needed for certain conditions to be made exempt rather than conditions. I think part of the reason why, after a lot of looking at this issue, we felt that probably the simplest thing would be to get rid of prescription charges altogether is that whatever system of exemptions you have there are bound to be anomalies and unfairnesses within it. Q165 Mr Burstow: In designing an alternative system, can I ask if there are any criteria or factors that should be taken into account? This point about looking at exempting particular drugs is one way in which it might be approached. Are there any others that we should be considering? Dr Harrison: Obviously the simplest thing is to abolish charges for prescription drugs entirely and then everybody on the receiving end of that would be happy. If the Government then says "Yes, but we lose £450 million, what do we do to make that good?" I think the difficulties would arise in trying to get consensus on what the best way of replacing that lost revenue was. I could think of other systems of charges that would probably be more equitable and still raise some revenue. The point has been made about the fact that some people with substantial incomes are exempt. You can think of different ways of capping the total sum people have to pay. People may not know how much a course of treatment is going to cost and so they do not take out the Pre-payment Certificate. A simple way round that is to have a limit at a low level, for example let us say people pay up to £50 and then everything is free and a higher level where better off people might way £100 and within a given period everything is free. You could think of other ways of raising money from prescription drugs. I guess in any system of that kind some people are going to be losers. Obviously the people who are exempt now and who are well off would be losers so they are not going to be very happy with it. I think that is where the trouble begins. Q166 Mr Burstow: Mr Darracott, have you anything to add in terms of what we should consider? Mr Darracott: I would support the idea that the method which seems to be used in lots of other places is either an income related single threshold or essentially everybody pays, but there is a safety net. There are ways of viewing that sort of income related idea which could be linked to some of the issues around the Pre-payment Certificate and the fact that they are not terribly well used. One of the issues in terms of the datasets is that they exist in various places but they are not joined together. There are datasets which are what doctors prescribe and there are then different datasets of what has been supplied which the PPA may hold and it certainly exists on pharmacy computers, but they are not networked. Then there is the other dataset, which is the hardest of all to get to, which is whether any other medicine that has been not only prescribed but also supplied has ever been taken, and linking all those things together is quite complicated. I suppose one of the answers ought to be the long-awaited NHS super IT system which is going to connect everybody together and put everything on a particular card and then we might begin to make some progress. One of the things I ought to observe on that is that the Pre-payment Certificate itself is a complicated process as indeed is the HC11 which my 18-year old has just been given a copy of. This is a 16-page document. Have you ever seen an 18-year old trying to fill in a document of that kind? It is a very complicated piece of bureaucracy which has to be filled in. If we were to have a fully integrated IT system then an annual limit, presumably managed through that, as indeed the Norwegians manage, would be necessary and so when you get to your annual limit everything else is then free. All of the professionals in the system know it is free because they have an integrated IT system. Q167 Mr Burstow: So come back in 15 years and we might have an answer, is that what you are saying? Mr Darracott: Is that the current implementation date? Mr Burstow: I do not know. Q168 Dr Naysmith: I would like to return to an area that we touched on earlier and that is the question of how charges might affect the behaviour and decision-making of professionals involved in the National Health Service. I think Dr Harrison has indicated that Dr Schafheutle had some evidence. Do you think there is any evidence that these professionals make decisions which could result in suboptimal outcomes for the patient; in other words they do not perform as well as they might with their patients because of charges? Dr Schafheutle: I am not sure if it is suboptimal outcomes because GPs will do their best to try to keep the cost as low as possible, but if the GP feels that a particular medication is required and they prescribe it then there is not an awful lot else they can do. If the patient cannot afford it then I am afraid the problem is very much left with the patient. There are a number of things that GPs will do. One example is to prescribe a longer supply of medication. So rather than just writing a prescription on a monthly basis, a GP could issue that prescription for two or three months, which means the supply is given at the same charge for that longer period, which helps for that person to afford their medication. The focus groups that we have done with GPs have shown that they may try and prescribe what they call "more effectively". So if there is a way of only prescribing two different items rather than three, they will try and do that. There is only so much they can do. There is not a lot of flexibility within the system for GPs to adapt or other people to adapt their prescribing to bring the costs to zero or something. Q169 Dr Naysmith: It emerged earlier on that sometimes patients manipulate the system. If they know they cannot afford a prescription they do not go and seek advice. Is that something that you think people need to be warned about? Do you think professionals need to be warned that there are such patients and they need to look out for them if they can? If nobody turns up at the surgery then the doctor will not know about them and they are often chronic patients. Dr Schafheutle: It is a good idea to alert and remind people that there may be people who have affordability issues in paying for their prescriptions. As I said earlier, we know from some patients that they will not raise their problems with the GPs and yet the GPs tell us that they will try and help the people, but if the two do not talk to each other then that is not going to happen. So to encourage the professionals to raise the issue will be important. Q170 Dr Naysmith: Dr Meldrum, do you have anything to add? Dr Meldrum: I think on most occasions GPs will try and prescribe what they think is the appropriate prescription and unless the patient raises an objection or a problem they will assume that everything is all right. I do not think - and perhaps we should - we routinely ask people if they are going to be able to afford the prescription, we tend to rely on the patients. It is maybe not the tip of the iceberg, but I am not getting feedback from all the patients who realise they cannot afford it because in some ways they feel they do not want to offend me by saying that and so they will either talk to the pharmacist or do something else. Q171 Dr Naysmith: Given what Howard was saying earlier on about the enhanced role of the pharmacist nowadays, maybe people would ask advice from a pharmacist as to which is the most important of the medicines. Mr Darracott: That is right and they do. The pinch point comes at the point when the money has to change hands. It is very easy to think £6.50 is not a lot, but if it is four items then it is £26. If you have just been to the doctor and it is late in the evening you might not have that. In preparing for coming here I had a very useful conversation with Gerald Alexander, our Vice President and he gave me three examples off the top of his head of where that has happened very recently to him as a practicing pharmacist, where patients have asked his advice. Paradoxically, from the patient's perspective, professionals are doing a great job because they are helping them make what are actually quite difficult choices. One example that Gerald gave me was of a 19-year old, so someone literally just into the bracket where you start to pay charges. This was an asthma patient, it was a four item prescription, it was an acute episode requiring an antibiotic and a steroid as well as a preventative reliever and the question was, "I can only afford two, which do you think I should have?" From the pharmacist's perspective preventers are very important but that is not what gives the patient immediate relief. There is a kind of trade-off there for the patient and the pharmacist is therefore helping the patient to make those decisions, so from their perspective it gives the professionals an opportunity to appear even more helpful. They are live choices and they happen on a very regular basis. Q172 Dr Naysmith: What do you think would happen to the workload of GPs and pharmacists if prescription charges were abolished? Dr Meldrum: One would not necessarily want to see the abolition of prescription charges and nothing else, I think it has to be part of a package. There needs to be better education about what is appropriate to go to the pharmacist or to the GP with. At the same time I would probably want to see either a voucher system or a pharmacy prescribing system certainly for minor ailments so that people were not prevented from accessing appropriate medicine but that they would not necessarily come to see a doctor for. I think there is the potential for an increased workload. Perhaps only some of that increased workload would be inappropriate because there is plenty of evidence, as we said earlier, that people for whom it would be appropriate to attend the doctor are dissuaded from doing so because of the thought of charges. Although with one hat on I would not like the thought of that, in trying to provide the best service and treat people well I want people for whom it is appropriate to come to see me to come but, at the same time, I want to try to divert those who should more appropriately be seen by the pharmacist at the pharmacy and make sure people can access care there without additional expense. Dr Harrison: The experience in Wales should give us some clues as to what would happen in real life, but, leaving that aside, clearly if charges were abolished there would be some increase in the usage of pharmacy drugs, but that is a short-term impact. If we believe - and we have to be careful about this - that studies done in other countries can transfer to this healthcare system then the medium- to long-term effect might reverse that. There is no doubt there would be a short-term impact in terms of workload, but what we said in answer to the questions that we collectively tried to answer earlier on about the overall impact of charging was we could not know because the relevant studies had not been done for this country. If things worked out here as they have done elsewhere then the medium-term impact could be favourable. That is a big speculative question we cannot answer. Q173 Dr Naysmith: Finally, what do you think the effect would be on the pharmaceutical industry if there was the abolition of prescription charges? Mr Darracott suggested in his written evidence that the Government has a dual interest in this because it is interested both in the health of the pharmaceutical industry and the health of the population. When we were doing our pharmaceutical industry report not all that long ago we recommended that it would be better to transfer the pharmaceutical industry to the Department of Trade and Industry rather than have it dealt with by the Department of Health, but the Government did not think that was a good idea and it is not going to adopt that. Do you have any further observations? Mr Darracott: I think it would be broadly neutral. I can think of a couple of issues that might be helped by this. One of the anomalies that is in the system - and it is a fairly minor anomaly but it takes some explaining to patients - is that as a means of improving compliance in certain conditions the industry will package sets of medicines together. So the patient to all intents and purposes receives one box but they may have to pay three charges. That is a very difficult one to explain. So there may be an encouragement of more of that sort of activity needed because there is not an immediate disincentive, as perceived by the patient, to having what is effectively better treatment all packaged together. I suppose if the overall numbers go up then the industry is likely to be broadly interested in that. As to the impact and whether they should research more things, I am not entirely sure there would be one. It seems to me largely neutral in that respect. Q174 Dr Taylor: You have given us a huge amount of information and it is really very helpful. Obviously the overall message is that prescription charges are a blunt instrument, inappropriate to government policy and aims and that you would really like to see them abolished. Is that fair? Dr Meldrum: Yes. Q175 Dr Taylor: You have already given us lots and lots of suggestions of changes that could be made to the system that is working at the moment. Can I pick up one or two of those specifically? We gather that in Scandinavia they are widely used, that they have lowered the prescription charge and got fewer exemptions. Have you any comments on that? If we cannot get rid of prescription charges, you have given us several suggestions of what we can do. What about a lower charge and fewer exemptions? Dr Schafheutle: In the interviews that I do with people at the moment in my work I asked them about that and I found that people are not totally against paying for their prescriptions. I should add that these people are all paying for their prescriptions at the moment. They are very much in favour of the NHS. They say, "If we abolish prescription charges, how is that going to affect us?" They are willing to pay, but they are saying the problem really for them is the level of the charge, especially if you are looking at more than one item. Having a much lower charge would ease that. Q176 Dr Taylor: Do you get any feeling from the people who do not pay that there would be some willingness to pay? Dr Schafheutle: I am afraid I cannot say that because I have not spoken to those people as part of my study. Q177 Dr Taylor: There are tremendous anomalies amongst the people who do not pay. You mentioned the people with hypothyroidism. Has anybody ever asked them if they would pay for other things? Dr Meldrum: I do not think we have specifically. I am sure you would get a mixed response. I think some publicly spirited ones would think it is not really fair. Some of the elderly who are very well off would probably think it is not really fair. I am sure lower charges would be better than we have got at the moment, but to me it is almost a point of principle. We supposedly have an NHS free at the point of use funded from taxation. You could say should we not have a £2 charge for people coming to see me? That might help raise some revenue, it might help to dissuade people inappropriately and yet I think the same arguments would apply that would apply to prescription charges and I am sure there would be all the exemptions too. It does seem a bit incongruous that we have this system where you have a charge whereas the rest of the NHS - I know we are not talking about dental and sight charges at the moment - is virtually free. Fewer exemptions is a marginal improvement but I do not think it is really solving the problem. Q178 Dr Taylor: One of you has mentioned the work in Wales. Are they going down as low as £1 a time? Mr Darracott: They are going down to £3 in April and then the plan is that they go to zero in 2007. Q179 Dr Taylor: That is going to be well worth watching. Would there be huge administrative costs if we had a flat rate of £1 for every prescription or would that cut down the administrative costs? Dr Harrison: It would be a very expensive way of raising revenue, would it not? Q180 Dr Taylor: It would. Ellen, you mentioned the work in the US and Canada. You have given us a huge list of references in your evidence. Are the references to that work listed there? Dr Schafheutle: I can check if it is in the list of references. Q181 Dr Taylor: It would be extremely useful if you could let us have the references to that. If the ingredients are mixed, for example hypertensives and statins, in the same pill then presumably that only has one prescription cost. Mr Darracott: Yes. Q182 Chairman: Ellen, you talk to patients who find it a burden having to pay. What do they say about the threshold, which is effectively not tapered at all, it is on income and you are either over it or not? Beside the pre-payment thing, do they say that there is something wrong there? Dr Schafheutle: Those that are aware of it very commonly say it is important that we protect those people that are on a low income. They are not necessarily aware of whether they are or are not unless I speak to somebody that really is just above that income level. Q183 Chairman: So nobody says to you that this threshold is harsh in as much as it is not tapered, you either go under it or you go above it? Does anybody ever say that to you? Dr Schafheutle: Sorry? Q184 Chairman: The threshold for paying is you meet a set level and then you have to pay all of that, there is no taper on that level at all. Does anybody ever say that that is unfair? Many other things we get from the state do have a taper. Dr Schafheutle: I am afraid that most people do not know exactly how the prescription charge system works. Even though I may spend my life thinking about it, most people do not, so they are not aware exactly of where the level is and they do not comment in that detail. Q185 Anne Milton: The level of the charge is set and the exemptions, et cetera is really difficult to look at until we know how much it costs to the system because there is a point at which the system is costing more to administer than the money you are collecting. You were saying it is almost impossible to find that out, were you not? Dr Schafheutle: Yes. Q186 Anne Milton: Nobody has any idea because the administration of the system is crucial to the costs, is it not? Dr Meldrum: Yes. Q187 Anne Milton: So it is all a bit irrelevant otherwise. Just moving on to Dr Harrison, your evidence concludes that, "co-payments are generally an inefficient way of achieving objectives which could be obtained more easily and with fewer undesirable consequences by other means". I wonder if you could expand on "other means". Dr Harrison: I think we are just referring there to the simple point that if you want to raise income, general taxation is a better means of doing it with a very specific, focused charge-cum-tax and that is the point we had in mind, I think. Q188 Anne Milton: Better ways of doing it with regard to prescriptions or just generally? Dr Harrison: Generally. Q189 Anne Milton: So raise the money from elsewhere, just from general taxation. Nobody else has anything to add to that, have they? Dr Meldrum: Only to say that the BMA did a very big review of how to pay for the NHS and looked at all the various things, whether they be insurance schemes or whatever, and decided that the favoured and most effective way was to raise the money from taxation. Q190 Anne Milton: And, therefore, could cut out all sorts of charging? Dr Meldrum: Yes. Q191 Anne Milton: Is that without exception? Would you all want to scrap charging? Is it just the inconsistencies that bother you or is it the charging in itself and, going back to what Dr Meldrum said, would you rather the revenue came from general taxation? Dr Meldrum: My own view, and there are two things, yes, on a point of principle, and we keep going on about an NHS which is free at the point of use and this is an example of where it is not, so there is an issue of principle there, but I think, for a lot of practical reasons as well which we have tried to outline, this system is obviously full of anomalies and I suspect that any alternative system might not have as many anomalies, but would still have several and, therefore, I think would be seen as not being entirely fair. Dr Harrison: Perhaps I could make a slightly different point from that. The Government is spending a lot of policy effort and a lot of money on promoting access and the latest White Paper is a good example of that. In and of themselves, most of these initiatives look good and attractive, but they do cost money. One way of rephrasing this discussion is to say that improving access is a good policy objective and here we are actually reducing access for albeit a small section of the population, or a lot in terms of people, but only a small section of the pharmaceutical bill, so is it consistent to open up GP facilities in railway stations, walk-in centres, high streets and so on which are free while imposing, as it were, the entry fee for some people to pharmaceuticals? Prima facie that is not consistent, so if the policy is to promote access, why are we restraining access here? It is not easy to see an argument for it. More specifically, the Government has quite rightly begun to focus on long-term conditions and I think in itself everybody would say that was a good move as well, so it is a bit ironic to create a barrier for some of those people with long-term conditions to access the medicine they need. Again there is a big inconsistency between the policy objective and the charging system that we have. Q192 Anne Milton: Mr Darracott, I would be interested in your views. Mr Darracott: I think, broadly speaking, that is right. Our paper, I think, says we support a move towards abolition, that our long-standing policy is that there should not be a financial barrier for access, but also we would be in favour of a major reform of the system in a way that can be shown to have little or no deterrent effect on use, particularly focused on this segment of people that tend to be very vulnerable where they are just into the charging bracket and yet they are people who are faced with these decisions. Q193 Anne Milton: So, just to sum up, discussions about the anomalies are really a bit irrelevant to all of you and we should look at just forgetting the charging there and to raise the money elsewhere, correct? Dr Meldrum: Correct. Q194 Anne Milton: I am looking for you, Ellen, to shake your head one way or the other. Dr Schafheutle: I think the important thing is that the vulnerable groups are protected, those on chronic medication. As a researcher, I like to make my statements based on the evidence I have available, for me to say that I think you are going to solve all problems by abolishing---- Q195 Anne Milton: No, I was not suggesting that. Dr Schafheutle: I think the important thing, and everybody has said it, is that the current system is inequitable and the important thing is that those people that are actually deterred from accessing necessary, essential medication are protected. Q196 Anne Milton: I just go back to the final point, that until we know what it costs to collect the money, it is all a bit daft really, utterly daft. Mr Darracott: Just on that point, I am sure within the reports of the PPA, the actual administrative cost of the system must be logged there somewhere. Q197 Anne Milton: Well, I do not know. Mr Darracott: I guess the counterpart to that is that the system of charges now is currently administered largely by people who collect it as part of their job and the actual transfer of the money into the revenue is an automatic one because it is taken off the reimbursement back to those people who work for the NHS, so, from that perspective, it is actually quite an efficient way of collecting money because it is being administered in the high street and it comes straight out and is top-sliced off the remuneration and reimbursement that is going back. Dr Meldrum: You are only indirectly paying the tax collector, whether it be the pharmacist or the dispensing doctor. Dr Schafheutle: It is probably the administrative costs of administering the exemptions. Anne Milton: Precisely, it is all the rest of it, yes. Q198 Chairman: Dr Meldrum, do any of your patients ever get discharged from hospital with eight months' supply of effectively a prescription drug that they would normally pay for? Dr Meldrum: Sometimes they do. I am afraid, more often they get discharged with seven days' supply and then come knocking on my door, wanting a month's supply to follow on. Q199 Chairman: I just wondered if you thought it was inequitable that that can happen. Dr Meldrum: Yes, and of course the reverse happens too, that they will go to hospital and take their tablets in with them which they have paid for and find that they disappear somewhere into the system, which some people might view as actual theft, but never mind. Chairman: It is a give-and-take situation, is it? I am not familiar with that! Q200 Mr Burstow: This question follows on from that point. With the direction of travel of policy which says more is going out of hospital in the first place, will there be more instances where there will be drugs which hitherto you would have got free and in future will be paid prescription items? Dr Meldrum: It is possible. You are really only talking about the cost of medication while somebody is in hospital or for that immediate period when they come out in terms of what they do not pay for. I think the other thing I often get when people come out of hospital on half a dozen different drugs is that they say, "I don't really need to keep taking all of these, do I? Which ones can I cut out?" Sometimes there are good clinical reasons for cutting them down, but often there are economic pressures for patients to do that as well. I am not sure that necessarily the shift to more out-of-hospital care will have a huge impact in that direction. Q201 Dr Stoate: As a GP, one of the things that always surprises me is the number of people who do not actually know that there is a Pre-payment Certificate or certainly do not know how the scheme works. I wanted to ask Rob, if it were more widely publicised, do you think that would have a beneficial effect on the system? Mr Darracott: I think it would. I am not sure how it is publicised at the moment. The publicity which I am familiar with is this card which you will find normally situated in a pharmacy somewhere. This is actually produced by pharmacists. This is their contribution to getting over this issue because it is a live issue, but it is produced by pharmacists, not the NHS, to explain to patients. I happen to think, and you have asked a question, that we probably do not make as much of Pre-payment Certificates as we ought to on this card, but we are concentrating on the headline figure, the PST produces this card, concentrating on the headline figure. I think, in short, more publicity would be helpful because at the moment the profession itself is producing this card to tell patients about what the charges are. Q202 Dr Stoate: So certainly if we were, for example, to recommend the Government put much more effort into publicising it, you think that would be helpful to the system? Mr Darracott: Yes. Q203 Dr Stoate: Another quick question on the same line - do you think there should be a monthly version of the Pre-payment Certificate? For example, you pay for a television licence on a direct debit monthly, so do you think the same should apply with the Pre-Payment Certificate and would that be helpful? Mr Darracott: I think it would be helpful. Intuitively that just feels right, does it not, that, if you make it more available and there are more ways to pay, as there are so many ways of paying the Congestion Charge, having more ways to pay just seems intuitively to be right. There is this issue that it is a big slug of money. For some people £30-odd is a lot of money when they are faced with it in the pharmacy right now. "I have got three items. Might I use five or six over the course of the next four months? I do not know. Do I want to pay for three now or shall I find money for six now?" For some people, that is a lot of money, and the £90 is certainly a lot. Q204 Jim Dowd: Just briefly on that point, is the pharmacist really in a key position to promote this because most people, I imagine, get their prescriptions from the same pharmacy? The pharmacist has the records and over time must be able to see who is going to benefit from the certificate and those who will not. Mr Darracott: Yes, I am glad you have asked me that question because I think that is absolutely right. Pharmacists do help people and point them in the direction of the Pre-payment Certificate where that seems to be an option. I think there is another point which leads on from that, that there is a new strand of policy, if you like, within the new contract for pharmacists in England and Wales which is about promoting a new service which is where pharmacists will review medicines that patients are taking where, generally, people are taking several groups of medicines. Now, it would seem to be entirely consistent with that policy that people are encouraged to use the same pharmacy over and over again because that is the way the relationship builds up. We have a system, unlike the GP system, where patients can have free choice and they can go to different pharmacies at different times. In the Norwegian model, the annual cap is pharmacy-related, so if you are, for want of a better word, promiscuous with your prescriptions and you go to lots of pharmacies, you might never get to the point where you trigger the annual cap, so there is a thing built in there where patients, whilst they have a free choice, are encouraged to use the same provider of services over and over again and we would see that as being a good thing because that is how the relationship builds up and that is how the health professional can help people. Q205 Anne Milton: We get suggested questions and I am slightly bemused by the beginning of this question actually which says, "If the NHS enters a time of fiscal stringency..." but when has it ever not been in a time of fiscal stringency? You might find it difficult to answer, but how would you rate the abolition of prescription charges against other calls on NHS funding? How important do you think it is? Dr Meldrum: At the moment, and we have argued about the costs of collection and such like, if you take the actual revenue of £450 million, whatever, it is less than 1% of the NHS budget, significantly less now, particularly with the budget having increased. It is obviously going to have an impact, one cannot deny that, but it is probably less than the appropriate accumulative deficit from certain trusts at the moment and, therefore, it may be that there are ways that one could actually compensate for that. Yes, I think I recognise that if you are going to get rid of prescription charges, the money has to come from elsewhere and, as I have said, it will have to come from central taxation. In the long run, that could mean a fractional rise in income tax, I suppose, but it would be very small. Jim Dowd: Or a reduction in GP contracts! Q206 Anne Milton: I was not going to be as harsh as that, but say that it would be an opportunity to encourage GPs to prescribe better. Do you prescribe painkillers or physio for a bad back? Dr Meldrum: I think I am always anxious to find ways to make sure that we prescribe appropriately and there have been lots of measures done to do that. Having said all that, the UK's drug bill proportionately is still significantly less than many of our Western counterparts. We are not particularly high medicine prescribers if you compare us to places like France and Germany and, therefore, I would slightly refute the inference that we are sort of frivolous prescribers. Q207 Anne Milton: No, I did not say that. Dr Meldrum: I know you did not. Q208 Anne Milton: There are maybe not always well-educated prescribers actually. I think that is an issue. Dr Meldrum: Yes, and you mentioned physiotherapy for a bad back, but unfortunately the sort of wait I have locally for physiotherapy is about 14 weeks and, therefore, there is not much option but to prescribe painkillers, at least for those 14 weeks. Q209 Anne Milton: Do any of the rest of the panel have a view? Mr Darracott: I would just support that. I think a lot of the levers around prescribing have already been pulled in the UK. In fact if you look at the long-run prescription growth, you can see when those levers have been pulled and how effective they have been. We have the highest generic prescribing rates in Europe, we have got lower costs, as has been mentioned already today, comparing like with like, so a lot of those levers have been pulled. In fact some of the other countries do use a charging system as a mechanism to pull those levers, so you will find differential rates of charging or co-payment related to the supply of a brand versus a generic, for instance. Well, we have very high generic prescribing rates in this country already and that lever was pulled ten or 15 years ago. Dr Schafheutle: Also it is worth considering that, if some of the ESU findings that we talked about earlier may apply in this country, the loss in revenue may actually be offset by saving people through not using their medication due to the access problem of cost, being admitted to hospital and actually using much higher-cost services than the prescription charge that is saved at the outset. Q210 Anne Milton: And we are not very long-termist, are we, in the NHS? Dr Schafheutle: I think it would be quite difficult to put a figure on it as well, so you have got a loss, a clear figure of £450 million, but how it would then translate into the improved use of resources would be probably difficult, but it is worth considering that because it may well be offset. Dr Harrison: This is the point we were on some time ago, that we do not know the answer to that crucial question, so, if one is saying, "What should happen now?", I do not think I would say that we should abolish it tomorrow, but I would say, "Let's get that work done and really prove, or otherwise, that the system is inefficient in its own terms", so prepare for that position, if you like. There is perhaps a wider point that stems from your question which is that, if we assume that the NHS will be in a worse financial crisis in two years than it is now, we might raise the question, "What role should charges have in that context in financing it?" If one raised that question, one could look across all services and I doubt whether one would come back and say, "Well, the best way of doing it is prescription charges", as we have it now, so I think this could be part of a much wider discussion of the general role of charges and, if one did look at that, one would be trying to identify areas where charges did the least damage to health because people could afford them or one was unaffected by them. Q211 Chairman: Dr Harrison and maybe Dr Meldrum as well, there is an argument that the country cannot afford the rise in drug costs at the moment and we are seeing the reaction of the Health Service, particularly PCTs, to the issue of Herceptin just in recent weeks. We are told in the media that there are many other drugs like that, probably as expensive, waiting in the line, waiting to come on to the market for the treatment obviously of serious conditions. Do you think there is an argument that really needs to be put forward, that, unless users pay more for drugs, it is a very small proportion of the actual drug costs, what users do actually pay at the moment? Dr Harrison, you are suggesting that not unless someone is having an operation does someone pay a little bit as well. Dr Harrison: What I am saying is that, if the situation is deemed to be so financially tight that you need income from the charges, you should ask the question, "Which is the best area to raise them from?" Just because drug costs are rising for the reasons that you mentioned, there is no reason to necessarily focus on that area. That is all I would say. Although it is obviously relevant and sensible to focus today on this particular set of charges, if you set it against the wider financing context, then I think you should look, or not you, but the Government should, at the appropriate time right across the board and decide where charges would impose the least damage. Q212 Chairman: And not user-specific as that argument would ---- Dr Harrison: That is right. I do not see that one needs to make that connection. Q213 Chairman: Dr Meldrum, what do you think? Dr Meldrum: I think you are really getting into quite complex arguments of health economics. If you are talking about Herceptin and these very expensive drugs for a few, but very seriously ill, patients, then I think there is not much link there with the argument about prescription charges. I think you are then talking about the overall costs of delivering a health service and what is the best, fairest and most effective way of raising the revenue to pay for that. I think our argument would be that prescription charges are not the most effective way of doing that. We will always have to look at priorities, what you can afford and what you cannot afford and that should be done on good evidence and the value for money that you are going to get in actually using any particular drug. Let's just take an example of drugs like statins where, yes, there is a very large, very significant immediate cost, but you have got to look at the long-term benefits and the potential savings, not just in actual cost to NHS, but in actually improving the quality of life for people. It is these sorts of arguments you have got to look at when you are deciding priorities and then decide how you are going to raise the appropriate revenue. I think all we are saying from the BMA is that we do not think that really part of that equation or a very logical part of that equation is to raise a small fraction of that revenue from prescription charges. Chairman: Thanks very much for that. Could I thank you all very much indeed. Witnesses: Ms Pauline Thompson, Policy Adviser, Care Finance, Age Concern; Ms Liz Phelps, Social Policy Officer, Citizens' Advice; and Mr Martin Rathfelder, Director, Socialist Health Association, gave evidence. Q214 Chairman: Could I welcome you all and I wonder if you could just give us your names and the organisations you represent. Mr Rathfelder: I am Martin Rathfelder and I am Director of the Socialist Health Association which is affiliated to the Labour Party in the same way as the Fabians. Ms Phelps: I am Liz Phelps, the Social Policy Officer from Citizens' Advice. Ms Thompson: I am Pauline Thompson, a Policy Adviser at Age Concern England. Q215 Chairman: I think, Mr Rathfelder, we should have had you here last week, so I hope you have not been on the train all week and it was just a delay last Thursday! Mr Rathfelder: Thank you very much for letting me have another bite of the cherry. Q216 Chairman: Can I ask you, starting with you, Mr Rathfelder, in your written submission you recommend the abolition of all charges, so why is that? Mr Rathfelder: We are essentially concerned with the issue of health inequalities and we see charges as deterring particularly the lower middle classes actually. We have a bizarre system where people with lower incomes and of middle age have to pay and other people get them free and that does not seem to us to make any sense whatsoever. The Government has made quite a lot of commitments to the idea of reducing health inequality, but the Department of Health does not appear to have taken that on board because clearly, if you make a charge on something, be it prescriptions or windows, then the consumption of those items is likely to reduce amongst the population least able to afford them. If we are serious about encouraging people less able to pay to use the Health Service, then forcing them to come up with £6.25 every time they have a prescription seems counterproductive. I would also like to say a bit perhaps later about the Hospital Travel Costs Scheme because that is also part of the same ---- Q217 Chairman: We will move on to that. Mr Rathfelder: ---- and other things that the Department of Health seem to have forgotten about, like wigs and trusses. I came into this because I used to work as a welfare rights officer in a teaching hospital and I was next door to the orthopaedic department. People who have to have a surgical truss have to pay for it, unless they come within the scope of the Low Income Scheme. Similarly, if they need a wig for surgical reasons, they have to pay a charge for a rather inferior item. These are forgotten areas of the National Health Service and I found myself advising doctors, pharmacists, all sorts of people, who had no idea about the Byzantine nature of the system of charging, exemptions and reductions in charges. A system of rationing which works essentially on ignorance seems to be the worst possible method of rationing. Q218 Chairman: Could you expand on your comments about the question of charges deterring patients from seeking help? Do you know which groups are particularly unlikely to seek help? You have said obviously the issue of income which is something we touched on in the earlier session and indeed we did last week, but are there other groups beyond this question of income? Ms Phelps: I think from our point of view it is a combination of people's chronic health problems and low income. It is when those two things butt up against each other, that is the client group that we find most often has problems with prescription charges. As we mentioned earlier, the PPC actually really misses out here on this highly vulnerable group because, if they cannot afford the individual charge, they cannot afford the PPC. Particularly, I think, when you come down to people on Incapacity Benefit, that is where it really hits hardest because a lot of this client group were on Income Support and they got free prescriptions, but then they got sick and, for whatever reason, got moved on to Incapacity Benefit at a slightly higher level and now, thanks to a slight change in the rules in April 2004, there is help with the short-term lower rate, but once they get on to the long-term rate, which is slightly higher, they lose out. What that does not recognise, and you might think that Incapacity Benefit is paid at a higher rate, so they can afford it, but the point is the way Housing Benefit, Council Tax Benefit and other means-tested benefits impact on ICB which is that they pull back 80% of any income above Income Support. I am not sure that Department of Health officials and ministers sufficiently recognise that. What that leaves is a huge poverty trap and, if you are trying to tackle health inequalities, you are missing the boat. From our point of view, we were very disappointed that this is the one area in the whole NHS where money is changing hands between patients and the Health Service and yet, in the context of the whole health inequalities agenda, it has not been looked at. Ms Thompson: Obviously for older people prescriptions is not an issue, but, where we do have problems, if you go to any Age Concern in the country, they would say they are really concerned about older people with dental charges and optical charges, and the amount of time they actually have to spend describing the Low Income Scheme. I think, when we are looking at costing things, you are not just costing what it costs the NHS to collect the money, but it is really costing all of those services that are spending hours and hours trying to help people and encourage people to go and to see the dentist when they are really quite scared to because they are so worried about the cost. We would, therefore, say exactly the same thing, that it really does impinge and we are very concerned about the way it does put people off. When you have got a government which has just issued a White Paper that mentions the word "well-being" 179 times and you are trying to look at the same time at charging to actually try and achieve that well-being, it just seems very strange. Mr Rathfelder: Just to follow up on what Pauline has said, because there is an age angle to this, it is not widely known that the Income Support system is age-biased. People under the age of 25 are given less money to live on and that is reflected in the way the National Health Service Low Income Scheme works, so for people under 25, they are expected to live on £44.50 a week, and that is not really a great deal and, if that is all they get, they get free prescriptions, but, if they have Incapacity Benefit or some other benefit or they work, the marginal amount above £44.20[sic] is expected to pay their rent, their food, their heating, the costs of all their prescriptions. If they have to have any dental treatment or an eye test or anything else, they are in severe financial difficulty. One other point I would like to put to you is that, if we are going to continue with some sort of means-tested system, why are we still attached to the Income Support system which was designed with entirely different considerations in mind? The point of the lower amount for people under 25 is that it is expected that those people will live with their parents, so they do not have as many costs, which may or may not be true, but I do not see that it is the scope of the Low Income Scheme to encourage young people to stay with their parents because that is the only way they can afford their prescriptions, nor does it make much sense for older people when they get an Income Support amount of £109 a week now. Why do we do that? If old people need £109 to live a tolerable standard of life, why should young people only have half of that? The argument for that is about incentives for work. Chairman: That might be for a different select committee. I have some sympathy with what you are saying, but not today. Q219 Dr Taylor: Going back to Ms Thompson, prescription charges are free, whereas dental and optical are not. Are there any others that are free for the elderly and for co-payment? Ms Thompson: Prescriptions is the one that is the free one. Older people get free optical checks, but not free dental checks, so why? Teeth are incredibly important to older people. Malnutrition, well-being, yet they can have free optical checks, but not free dental checks. Q220 Dr Taylor: Is there an argument that the very rich who are elderly should not get these exemptions? Ms Thompson: The problem is then that you are going to bring in means-testing and, as soon as you start bringing in means-testing, you get the whole problem of people who are entitled but not applying because they do not understand the system. You have already said that it is a labyrinthine system of means-testing for healthcare costs. Quite often it is a means-test for a one-off cost, so people think, "Oh well, I can't face filling in this 16-page form for a possible, very small charge", but of course the other thing that is not looked at and has not been looked at so far this morning is that actually people do not just have one-off costs. Overall, older people with multiple needs will have to travel to hospital, they will have their dental appointment, they will probably wear glasses, they might need a hearing aid, so, by the time you have added it all up, you are into quite large costs, but on each individual occasion with the problem of actually working through the system, then quite often you have to pay and get a refund, and that is another complication. Q221 Dr Taylor: We are coming on to the other bits, but would you agree with the previous witnesses, I think it was the witness from the King's Fund, who said that really the only way to increase the amount of money is from general taxation as being the only fair way? Ms Thompson: Well, we have got a free National Health Service, so you can either do that through taxation or rejigging, the Government deciding how one is spending the money and whether or not more should go into the NHS, so there are two issues there. Q222 Dr Stoate: Let's talk about the travel scheme for people who are able to claim travel costs back. At the moment, we have found out, only people attending hospital are entitled to claim on the scheme, but, with the Government's latest policy to move more care out into the community, does that not seem wrong and is there any way of improving it? Ms Thompson: Paragraph 6.67 of the White Paper sort of points in slightly the right direction because it does actually say that they are going to extend the patient transport service to where it was traditionally provided in hospital and they are also going to extend the eligibility for the Hospital Travel Costs Scheme to include people who are referred by a healthcare professional for treatment in a primary care setting. Now, I noticed in the last set of evidence that there was quite a lot of discussion about the Travel Costs Scheme and how very complicated it is and I think this will need quite a lot of unravelling as to exactly how good or bad it will actually be. Who is the healthcare professional who is referring for treatment in a primary care setting? People self-select to go and see their GP, so does that mean to say they would not get the Travel Costs Scheme for their first, initial appointment and it would only be after the doctor says, "I'll need to see you back here in four weeks' time"? There are going to be all sorts of issues around that which I have not had time to look at, but I would just say that this is on the cards, but how limited it will be and how much it will actually meet what is actually needed is another matter. Ms Phelps: I think there are two other aspects of that which really are important. One is what we have been raising in relation to access to dentistry which is a huge issue and, whilst we keep our fingers crossed that everything will be rosy after April 1, I think in the real world we do not expect that to happen. We have long been arguing that, if the PCTs cannot deliver dentistry in the local community, then at least there should be help through the Travel Costs Scheme for people on low incomes who actually have to make journeys of 30 or 50 miles because our evidence shows that that is one of the main reasons people have not been taking up any dentistry that they can get hold of from the NHS, that they cannot afford to get there, so there is that issue. Also completely forgotten is the issue of the costs for visitors to hospitals which is completely outside the scheme and is the only help that is available through the Social Fund. Again if you compare that with the Assisted Visitors Scheme for prisoners under the Low Income Scheme, they can get help every two weeks for a visit, yet you might have an elderly person who is long-term in hospital and her health is very much affected by the fact that she cannot get visits from her spouse because he cannot afford it. Those are exactly the kind of cases we are getting in bureaux which are really heart-rending and they cannot be right. Ms Thompson: I think there is another issue and that is that we have not talked about people who are actually getting continuing NHS care in nursing homes, yet they cannot actually access the hospital transport scheme for patients to be visited in those situations. Q223 Dr Stoate: Is it the case at the moment that, if someone is sent by their GP to hospital for an X-ray or a blood test, they are eligible for the scheme at the current time? Mr Rathfelder: No, because that is not care under the care of the consultant. Q224 Dr Stoate: That is what I want to clarify. Mr Rathfelder: If I can amplify that point, I think what we do not want is for people to come and see you in your surgery simply so you can authorise transport at the cost of £4 or whatever it might be in your locality. That does not seem a very good use of a clinician's time. The Social Exclusion Unit report on transport, I thought, was very good, but the Department of Health do not seem to be in the least bit interested in implementing it. Q225 Dr Stoate: So you would recommend a thorough review of the system? Mr Rathfelder: Yes, because it has got to take into account the money that is spent on the patient transport service at the same time which at present is officially regarded as providing transport for people for whom it is clinically necessary, but that does not convey any real meaning to me. If you are sending your patient to hospital, it is clinically necessary, I imagine, in your judgment that they should go there. If they cannot afford it, then are they entitled to the patient transport system? It is not an ambulance service. Q226 Jim Dowd: But that is not it. It is for people who are deemed to have a medical condition which makes public transport unsuitable. Mr Rathfelder: Well, most of them do go simply because they are old and frail actually. Why is public transport unsuitable for old, frail people? Q227 Jim Dowd: For the same reason you get off the Congestion Charge if you want to go to St Thomas's, for example. If the clinician says that you are unfit to use public transport, you are ---- Mr Rathfelder: So we all have to go and see our doctor so that he can certify us as being incapable of going on a bus? Q228 Dr Stoate: Does it have any effect, negative or positive, on people who are housebound? Are they in any way disadvantaged or advantaged by the current scheme? Ms Thompson: One of the problems we come across is where people who are housebound, and I am not only talking about the Hospital Travel Costs Scheme here, but the patient transport service, and, because they are housebound, they need to have the patient transport service and it, therefore, makes appointments very, very long in hospital. You are talking about pretty ill people and, because the ambulance will come and pick them up at whatever time it suits the ambulance, quite often that is two or three hours earlier than the actual appointment, so the person is then actually sitting in a waiting room for that length of time to actually get seen and then quite often they have to wait another hour, so it is a day trip basically if you are using the ambulances. Q229 Anne Milton: Pauline, hospital car parking charges for the elderly, how great a burden do you think they are? Ms Thompson: We are getting increasing numbers of phone calls from our local Age Concerns about it and from people directly. It is probably not to the same level as perhaps the Macmillan evidence will be, but people do actually often have more than one condition, so they go into hospital for one condition one day and within the same week they can go to hospital to see another person, so overall it does actually start to mount up. Because many people cannot use public transport, then they are using their cars to drive themselves, but more often than not relying on friends and family to drive them, so then that person has to park in the car park. We are beginning to find that the charges really are going up and it does seem to be a revenue-raising system for hospitals. Also, the more inefficient the hospital is, the more you are likely to be charged because, if you are there and your outpatients appointment is at such-and-such a time, but you actually wait two hours, you are then paying extra for the hospital's inefficiency which obviously does not go down very well, so it is actually becoming much more of a problem and we have been getting more and more phone calls about it over the last few years. Q230 Anne Milton: I think the difficulty with saying that people can or cannot use public transport, probably the truth is that everybody can, but it is just that it will be deeply unpleasant and unacceptable. That would be my feeling. At what point can you not use public transport? Ms Thompson: Many people cannot use public transport. They might have a back problem, so they cannot actually go and stand at the bus stop. They might have difficulty in getting on the bus. The buses do not always go to where you want and you might have to have several changes on the bus, so you might actually be talking of making a journey which by car would be about ten/15/20 minutes into a journey of an hour or an hour and a half. That in itself for older people, who might not have a huge amount of energy and who are, by nature, ill because they are going to hospital, I think it is actually quite impractical for some of them to use buses and probably the majority. Q231 Anne Milton: I am not actually disagreeing with you. I am saying it is a bit of a nonsense to talk about it because it is terribly area-dependent. A bus in a rural area is a completely different prospect from a bus in the middle of London. Ms Thompson: Yes, but some people would just have absolute difficulty in using a bus. Mr Rathfelder: There are particular problems for people with sick children where of course the patient is not the person who is paying the costs. People who have a number of children who may not have anywhere to leave those other children may have to take the entire family to hospital. People with severely disabled children, certainly in Manchester when I was working there, had consultants often in six different hospitals and would spend their entire lives trekking from one place to another to see Mr So-and-so for one organ and Mr So-and-so for a different organ. I had a terrible case of a Somali man with a child with dislocated hips and he was expected to take this child in plaster on a bus, then change in the middle of Manchester, walk across the middle of Manchester from one bus station to another bus station and the hospital would not pay for a taxi for him and, although they accepted that he was eligible for the Hospital Costs Travel Scheme, they would only pay his bus fare. I thought that was cruel and inhumane. Q232 Anne Milton: Should we pay the childcare costs then, do you think? Mr Rathfelder: Well, it would be more sensible than dragging all these other children into the hospital. Q233 Anne Milton: Pauline, do you think we should be building car parks at hospitals to help with transport and letting people have it free? Ms Thompson: Quite a few hospitals do actually have them and I know in London it is different, but a lot of hospitals do have fairly large car parks, though there is always a problem about how many disabled parking places there are. Certainly I think that hospitals need to take cognisance of the fact that many patients are old and are not going to easily be able to get there, so you, therefore, do actually have to think of it in the round. Again in the White Paper it does actually very specifically look at local transport in general which is welcome to actually get some joined-up thinking between local transport and the Department of Health, but I do not see how you can avoid car parking in the current system. Okay, I think we are going to raise some new issues when we go to the idea of more surgery care and again I think they are going to need to address that issue because quite often surgeries will not necessarily have adequate parking nearby, so it actually in some way could compound the problems initially while people think about how they are going to access the surgery if they need to come by car. Q234 Anne Milton: And there are issues with community hospitals which are very good and local, but you have clearly read the White Paper in a great deal more detail than I have at this stage, but I think they are talking about populations of 100,000 which in rural areas is a huge geographical spread probably. Ms Thompson: Yes. Q235 Mr Campbell: The Low Income Scheme which was mentioned before, what are its weaknesses and does it benefit those it has got to benefit? Does it benefit the people it is supposed to? Ms Phelps: What we do not know is how much non-take-up of it there is, but our evidence would suggest that that is a lot. It is highly complex and it is divorced from the DWP benefits, so it does not benefit from being piggy-backed in any way when you are making claims for other benefits. It is not well advertised. Amazingly, health providers are not required to publicise in the GP surgeries, in pharmacies, in opticians and dentists, they are not required to display any information about it, so it seems to me that was a missed opportunity with the new contracts which could require that, but they do not. Then it is very complicated and, as has been said, the leaflet runs to 70-odd pages and the claim form runs to 16 pages, so it is very deterring. Our evidence certainly shows that it does not work insofar as a lot of people who should be getting help through it are not. Perhaps the worst thing that is coming and the one thing that we did not pick up in our 2001 report because it happened since is this system of penalty charges which has now come into force. That is a very harsh system. You can understand you have got to police any system once you have built it and it is another admin cost, once you have built a system you have to police it, so now if you so-called fraudulently claim for a free prescription and you get caught, you are subject to five times the prescription charge and, if you do not pay it, it doubles in 28 days. We are finding a lot of clients caught in that system who actually could have got free prescriptions under the Low Income Scheme, but nobody told them or actually in some cases pharmacists and health professionals told them wrongly. They said, "Are you on benefits? In that case, tick that box". Q236 Mr Campbell: That was going to be my next question. Is there anything in the information line that is put out to get this across? Ms Thompson: The Department of Health does produce publicity, there are leaflets and things, but I would like to see all health professionals required to display this and required to be more proactive, particularly at the point of the pharmacy, at the point of dispensing, to pick up whether or not people should be entitled and to help direct them towards that. There is a lot more that could be done, but, having said that, the system is burdensome, it is complex. Q237 Mr Campbell: It is not very good. Mr Rathfelder: If it was not a system based on the social security system but something with a simple line which said, for example, that if your income is under £100 a week, then you qualify, because the key information that people need to know is whether they are poor enough to qualify, and on the Department of Health's website, there is a frequently asked question, "What is the maximum income I can receive that would still enable me to qualify for full help?" and what is the answer? "Each claim is assessed individually based on the information contained in the HC1 claim form. There is no maximum amount as it depends entirely upon the circumstances of the individual or family", which is of course just the information we were looking for, is it not? Ms Phelps: It is interesting, looking again at who is entitled to free prescriptions from that point of view with the new Tax Credits system. It has become really bizarre that, if you are entitled through that, if you are in receipt of Working Tax Credit with a disability element and/or Child Tax Credit, then you get free prescriptions up to an annual income of £15,050 which is about £289 a week, but, if you happen to be a single, unemployed person who is sick and on Incapacity Benefit, then it is IS plus half the prescription charge, which is £59.45 a week. Now, there are just huge differences and it shows how the system has grown piecemeal and there is no coherence to it. Q238 Mr Campbell: You have suggested tapering assistance to reduce the impact of the purchase of the Pre-payment Certificate, which is another promising idea as well, as well as greater passporting to treat benefits. Can you expand on that? Ms Phelps: One thing you could day is say, "If you are entitled to a means-tested benefit, then you get your free prescriptions", so you piggy-back on to that and do not have two tapers for in particular, Housing Benefit and Council Tax Benefit, which run well above Income Support levels, and that would simplify it for a lot of people. The thing we have said about the Pre-payment Certificate, I do not think it would complicate it more, but it would just be to say that you bring it into the Low Income Scheme, so you would leave the system as it is, but, if you are on a low income, your HC2, well, you make your claim on the HC1 and then you get the form on your Certificate, asking how much help you get with dentists, how much with optical charges, et cetera, and it could also say, "You can get a Pre-payment Certificate for £5", £10, £15 or whatever. I think that is, to our mind, a much better way of saying that you can pay it once a month because you are still saying that people on low incomes have got to pay £90-something over the year, whereas, if you actually tapered the costs of the PPC, you would be giving people on low incomes the same advantage that people on higher incomes have who can afford to cap their costs. Q239 Mr Campbell: That would be good, I think, if that could happen. If we cannot get the charges abolished with this Government, then obviously I think that which you have mentioned is a better plan hopefully. You have mentioned the voucher system just before for low-income groups. What are the pros and cons of this voucher system? Ms Phelps: The optical voucher? Q240 Mr Campbell: Yes. Ms Phelps: I think it is the bit that confuses people most partly because it sort of works the other way round. Instead of telling you how much help you get, it is the amount that you have to pay, so people get very confused about it in the first place, but the real problem with it is that there is no guarantee that you can actually get glasses within the cost of that voucher. It seems that in one part of the world the Department of Health fixes the cost of the voucher, and this is for people on Income Support on the lowest incomes, and in another part of the world opticians are deciding what the cost of glasses is and it is never road-tested properly, so particularly if you are living in a rural area where you cannot shop around so easily, you could well find that your local optician just does not provide them within that and you have got to find the difference which then immediately brings you below the Income Support level. You may then decide maybe, "I can't afford to go to the optician's at all" and all the other health inequalities we have seen. We have suggested that that has to be joined up better and that, if opticians are dispensing through the NHS system, they should be under an obligation to provide glasses within the cost of vouchers. Q241 Mr Burstow: That has partly answered a question I was going to ask about the voucher system and how we can set the value in a way which is more sensible, and joining up the two parts of the system would make some sense. Are there any other points you would like to make to us about how we can set the appropriate principles when it comes to setting the value for spectacles and vouchers? Ms Phelps: I know the Department of Health does sit down and talk about this with the optical profession, but so often when you get these semi-privatised systems, what you end up with is a shortfall because the market does not actually deliver what perhaps was the initial intention, so we have to find a way of joining that up. The other thing we were considering is that maybe NHS Direct should, in the same way as it can now direct you, in theory, to your nearest local dentist, also be able to direct you to the optician who can provide glasses within that. It will make the Department of Health much more aware of exactly where those were. Q242 Mr Burstow: That sounds like a useful suggestion. Pauline, do you have anything else to add on this particular point? Ms Thompson: I was just thinking, and this is just off the cuff, about the use of NHS Direct because one of the big problems we have with the Low Income Scheme in general is the amount of time it takes to fill the forms in and how complicated it is, so when you are actually looking at the costs of running the scheme, it falls very much actually on social services and any sort of organisation that offers welfare rights advice, so Age Concern, all the voluntary organisations, are spending a lot of time helping people fill these forms in when really they could be doing better things. If the Department of Health is going to continue having these charges, should they not have responsibility also to take on the costs of actually helping people fill in the forms and perhaps do this over the phone, although that will not work for everybody. It does actually seem quite strange, and again it is partly mentioned in the White Paper, that more and more GP practices are being encouraged to get welfare benefits advisers in. In fact there has been some research done by Liverpool University and the CAB about actually how getting benefits advice and actually an increase in income did actually improve people's mental health and well-being and they have actually done a longitudinal study looking 12 months later at the people who actually did benefit from the benefits advice. Therefore, you have one arm suggesting that you need more and more people to give benefits advice to the well-being agenda and then, on the other arm, charging. Q243 Mr Burstow: So, as a sort of general conclusion from what we have heard so far today, would it be fair to say that there are some issues here about how Department of Health objectives and DWP objectives are met and whether they are actually properly aligned? Ms Phelps: Yes, and I think the DWP is moving very much towards the kind of idea of not having to claim for each benefit separately, but pulling those together. If you look at HC1, a lot of the questions, they exactly mirror those of other means-tested benefits, so you should not require people to go through that whole thing. Ms Thompson: It should be a single assessment process as well. Ms Phelps: Exactly, it should be brought into that, but that means more joining up between the Department of Health and the DWP. Mr Rathfelder: But the DWP makes assessments of the take-up of the various benefits and regards getting people to take up what they are supposedly entitled to as valuable. I have not seen all your evidence, but I have not seen any sign that the Department of Health has made any estimate of the take-up of the Low Income Scheme and how many of the people who are supposedly entitled to it either know it, know anything about it or take advantage of it. Q244 Mr Burstow: Well, we will have the Minister before us at some point and you may have helped us tip them off that we might want to ask that question. Ms Phelps: What we find particularly hard in that context is that then you can be penalised in the context of not actually having maximised take-up. Q245 Mr Burstow: I think that point has been very clearly made to us today and certainly it is something I think we would want to come back to with other witnesses later. Can I come on to some specific services because really in a way that is the best way to understand how the system is working and how it might not work in the future. In the evidence we have had from Age Concern, there was a reference to the new structure of dental charges and how that will be inequitable for older people. I wondered, Pauline Thompson, if you could say a bit more about how that actually is so. Ms Thompson: We are obviously very concerned about dental charges because we have got loads of evidence about the problems that older people have with their oral health, and again it is all part of the Well-being Agenda, that it is really important. The fact that people do actually have to pay for their dental check-ups and then, once they have had their dental check-ups, I know we have got new charges and some of the worries have been slightly alleviated by the fact that the cost of replacement of lost or damaged dentures, they are making it slightly lower, but we do still have the question of what is going to happen to the people who just have wear and tear on their dentures and whether they are going to be expected to find £189 for this. I think really our big problem is that there are real problems with dental health, we know that dental health can actually affect people very severely, even to the extent of malnutrition, yet we are still not actually looking at whether or not we are putting barriers, well, we are putting barriers to people having good oral health. Q246 Mr Burstow: On this point about wellbeing and malnutrition being potential consequences of this particular policy, how well grounded is that in terms of evidence? Are we talking anecdotes here or actual research? Ms Phelps: No. There has been quite a lot of research on gerontology, meeting the challenges of oral health for older people. Q247 Mr Burstow: Perhaps references could be passed on to us so we can look at that. Can I ask Ms Phelps from Citizens Advice, last week I asked a question about dentures of Rosie Winterton, the minister responsible, about this apparent anomaly that 30% of the highest band will be charged where they have lost or damaged their dentures but they pay the full whack of £189 if they just happen to have had their dentures for a very long time and it is wear and tear. The Minister said there had been no change to the system. Has there been a change to the system in terms of how much people are paying and could you say a bit more about that? Ms Phelps: Yes. For my sins, I was on the Harry Caton group that looked at this. To start off with, given the health inequalities agenda it is very sad that the Government did set in the terms of reference of that group that they had to create the same amount of charged revenue as under the existing scheme, although compared to other European countries it is very high with people having to pay 80% of the cost, so a huge percentage of the charges. The new system has to deliver the same. There seems to have been a slight change in the language over time because the brief of the group was to develop a system which would deliver the same level of charges. We assumed that meant - working on 2003-04 figures - with inflation only up to what would happen in April, but in reality what has happened is the new dental contract has proved to be much more expensive than under the old system and the Department has decided it wants to raise the same percentage of take from charges as under the previous scheme. In fact, we are going to see a very significant increase in the amount of revenue that comes from charges post-April, which I think is another example of where policy is not being led by trying to tackle health inequalities, it is being led somewhere else in the agenda. What has happened in the end is bands two and three are significantly higher than the Caton group hoped would have happened, particularly band three at 189. If you look at the cost now of a partial denture, there has always been help with replacement and that has not changed, if you break it or lose it there has always been help with that, but if you are an older person who has had your dentures for a long time and they are not working properly any more, I am told that currently that will cost about £100 to get a new partial denture and under the new scheme that is going to be £189. Q248 Mr Burstow: So there is a change, they are going to be paying more. Ms Phelps: We knew that moving from however many it was to three bands would mean that there will be some gainers and some losers but what we do not know is where some of those big losers will be. It is a question of guessing, the Department has not been clear for which groups or in which situations it will cause the biggest losses. It struck me straight away that the partial denture was one concern. Q249 Mr Burstow: Maybe we need to return to that again when we have the Minister. Can I ask Age Concern about free eyesight tests for the over-60s. What is the evidence for an improvement in people's health as a result of that? Is there any evidence? Ms Thompson: I cannot honestly say. One would sincerely hope that by having a free test you are encouraging people to go along and are not putting a barrier to them having a test where other conditions might well be picked up. I think that there is that problem and across the board it is really important, it is part of health. You have chosen some things that you are charged for and some where it is free. Q250 Dr Naysmith: Can we move to another service that is regarded sometimes as a bit of a Cinderella in the National Health Service, and that is chiropody, which is mentioned in the Age Concern evidence they submitted to us. Particularly you talked about the service being free in theory but patients are charged by default for these services. Could you expand on what you mean by that? Ms Thompson: There is some evidence which we have just picked up, a report, and some government figures. Initial contacts with chiropodists have fallen from over 960,000 in 1996-97 to 169,000 in 2003-04, so that is nearly 200,000 less people who are being seen by chiropodists at a time when we have got more older people. It is because chiropody services have largely been withdrawn and their eligibility criteria are becoming much higher. We have got evidence from some of our local Age Concerns that even people with really severe arthritis who are blind cannot access chiropody services, they have to go and have their toenails cut and feet looked at either by a private chiropodist or local Age Concerns who in some areas are picking up the lower end, the toenail cutting service but, again, it is a cost to us to provide this service and sometimes we have to pass it on to the individuals. It is really charging by any other name. Basically, how much is chiropody part of the Health Service and how much is it health, how much is it social care. It is back to the old bath syndrome: when is toenail cutting a health service or a social service. One of our Age Concerns has been very concerned because they have done a huge tightening of the criteria and they feel that older people should not be put in the undignified position of having to plead for basic foot care. They had a case where somebody could not afford to go to a chiropodist and they ended up pleading with the health authority to go to the NHS chiropodist. They also, quite rightly I think, say it is a short-sighted policy because money might be saved initially but not in the long-term. We did a document some years ago called On your Feet but I think we would have to call it Off your Feet now because things have got so much worse. In her letter she ended up saying: "If the people who make decisions could come face-to-face with some of the toenails we have seen they might change their mind". It is really charging by stealth. Q251 Dr Naysmith: Certainly it is something where I imagine most MPs around this table have had a similar experience to me where you get people coming and saying, "We used to have our toenails clipped and now we do not". In my constituency, which spans two different primary care trusts and two different local authorities, there are a number of ways of dealing with that situation. You are right. I had a case two years ago where the health authority, after exchanging letters, said, "Has the person concerned asked her neighbour if he will cut her nails?" Within the area people recognise what you have just said, that you can prevent much more serious illness by clipping nails and doing minor foot care. Ms Thompson: A bit of help at the right time. We are always saying it. Dr Naysmith: So that is a hidden charge that we have identified. Q252 Jim Dowd: I want to return to Paul's question about the effect of removing the cost of eye tests. All of you individually have cited the deterrent effect of charges generally. Why is it possible to calculate that but not the beneficial effect of the removal of charges? Ms Phelps: Certainly from our point of view we see people come in the door who say, "I did not get my prescription filled" and the MORI work we did showed 750,000 people had not got their prescriptions dispensed in the previous year. We see that bit of it. We see other people driven to below poverty level paying them. The health impact, certainly in terms of prescriptions, is I would assume it is a given that if a health professional has decided that person needs that drug and they do not take it, to my mind that is enough, is it not? Q253 Jim Dowd: I am asking you . Ms Phelps: To measure the health outcome would not be something that we would be able to do around this table, you would have to do it further down the line. As Pauline said, the nearest bit is the evidence we got on the impact of just having CAB advice in GPs' surgeries and how that led to a reduction in prescriptions. Yes, it is possible. Mr Rathfelder: Does this not take us further towards what is the essential point of charging? When charges were first introduced they were clearly designed to reduce the consumption of medication but that no longer seems to be an objective of the present Government. Certainly in Manchester they are encouraging GPs to prescribe more in order to reduce other costs. It makes no sense to continue with charges. What may make sense is a more refined argument about what the National Health Service ought to be providing. The decision should not be made by individual patients who can or cannot afford £6.25 or whatever it is to have their teeth, toenails or whatever other part of the body is not included looked after. We have a system now for evaluating the cost-effectiveness of interventions and that was not in existence in 1950 or in 1968 when we had charges. We should have NICE investigating the cost-effectiveness of chiropody, eye tests, dental tests and deciding whether they are worth doing, not rationing them by paying for them. Chairman: I think you have answered Richard's next question. Q254 Dr Taylor: That is a very interesting point as to what the NHS ought to be providing because it raises the whole question of healthcare rationing which is something that I personally feel we should be facing up to. My question is the really huge question: if each one of you started with a blank piece of paper what would you have on it as ways of raising the money that has got to be raised other than these charges that we have been talking about? Everybody wants to abolish prescription charges but we have got to raise the £450 million they make. We want to abolish the other charges but where is the money going to come from? Mr Rathfelder: Either we put the money on higher rates of tax - I do not understand why people who earn more than £100,000 should pay less per pound than poor people do on their income - or we work out something that we want to deter. I would put a tax on hydrogenated vegetable oil personally. Q255 Dr Taylor: So we increase specific taxes on certain things. Anything else? Mr Rathfelder: No, I think that is enough. I do not see that there is any point in trying to raise money through the National Health Service, that is not the point. The whole point about the National Health Service is that it is supposed to be free at the point of need. We can have discussions about what it ought to be providing. Personally I have no qualms with some things you can pay for as an optional extra, although I do not know whether my colleagues in the Socialist Health Association would agree with that. Q256 Dr Stoate: I certainly would not and I am a member of it. Mr Rathfelder: If you are admitted to hospital and they say, "You can have wine with your meals but you have got to pay for it, but you can have tea for free", that does not seem to me to be ---- Dr Stoate: I think that is important because that is a slippery slope argument. Queen Charlotte's Hospital, which we have been looking at this morning in terms of an article, are saying you can have a decent midwife if you pay four thousand quid or you can have an NHS one if you do not and ---- Anne Milton: No, it was not saying that. Dr Stoate: It was not quite saying that. Chairman: Can we leave that point until we see the actual papers and then we will come back to that with another set of witnesses. Anne Milton: That needs to be challenged. It did not say "decent". Dr Taylor: Can we go to the other two to get answers. Anne Milton: That is very derogatory. Q257 Chairman: Where does the money come from if it is not charges? Ms Phelps: I have to agree, I think it has to come through general taxation. The reason for that is I think all of us would rather pay over our lifespan according to our means rather than face sudden large sums at a point when we are ill when that means our income has dropped for those very reasons. It is not the best way to do it. If you took it through the income tax system then you could instantly make a positive contribution to tackling poverty and ill-heath because those on lower incomes would pay less. We know that they are likely to be in higher health need so currently they are likely to pay more. It supports the prevention agenda and you cut those admin costs and penalty charges. Ms Thompson: I can only say I would agree with what has been said. Q258 Mr Amess: I just want Mr Rathfelder to clarify something. The Socialist Health Association is affiliated to the Labour Party, so you support Labour. I have been listening very carefully to what you have been saying. How successful are you and have you been in influencing the Government's health policy? Mr Rathfelder: This one or its predecessors? We like to claim some credit for the establishment of the National Health Service in 1945. More recently I think this Committee has been doing a better job than we have. Jim Dowd: So the answer is nothing. Chairman: The answer is no comment on that. Q259 Mr Burstow: This comes back to the question of drawing the line between what is free and what is not free. Last week in the High Court a judicial review decision in the Grogan case decided that the guidance issued by the Department in respect of NHS continuing care was flawed. Pauline Thompson, do you think that the framework that is long awaited, that is being put forward as the next step to try and deal with problems of NHS continuing care, is an answer to the criticisms that the court made last week? Ms Thompson: I think the judge did say it was the local criteria that was fatally flawed but he certainly had lots of criticisms about the Department of Health guidance as well. It is going to be a step - it is only a step - in that if you have one national set of criteria you have still got lots of different people applying it and it depends how the assessment tools are sorted out. All I can say is it really depends. I still feel very strongly that unless we have sorted out the registered nurse care bands and what is considered to be incidental and ancillary nursing care then I do not think we are going to be very much further forward. It will be very interesting to see whether or not there is an application to appeal the case and what happens after that. Chairman: Can I thank you very much indeed. Can I just say one thing: if any of you know of any study that has been done in recent years about the actual effects on charges due to the changes in benefits, Family Tax Credits and things like that, I would be very appreciative if you could direct it to us. It would be interesting to see exactly how quick or not the Department of Health reacts to these changes in the state benefit system. Thank you all very much indeed. I am sorry it has gone on so long. Witnesses: Mr Peter Cardy, Chief Executive, Macmillan Cancer Relief; Mr Robert Meadowcroft, Director Campaigns, Policy and Information, Parkinson's Society; Mrs Rosie Barnes, Chief Executive, and Ms Lynsey Beswick, CF Trust Expert Patient Advisor and CF Patient, Cystic Fibrosis Trust; and Ms Moira Fraser, Policy Officer, MIND, gave evidence. Q260 Chairman: I have to now say good afternoon, it should have been good morning. I am sorry for the further delay we have had in this morning's session. I wonder if you could introduce yourselves for the record. Ms Fraser: I am Moira Fraser. I am Policy Officer at MIND. Ms Beswick: Lynsey Beswick, I am an Expert Patient Advisor and also a Cystic fibrosis patient working for the Cystic Fibrosis Trust. Mrs Barnes: Rosie Barnes, Chief Executive of the Cystic Fibrosis Trust. Mr Meadowcroft: I am Robert Meadowcroft of the Parkinson's disease Society. Mr Cardy: Peter Cardy, Chief Executive of Macmillan Cancer Relief. Q261 Chairman: Thank you very much. Could I ask a general question to all of you. Which groups of patients are most disadvantaged by charges? Is it mainly a question of poor take-up of services or of hardship by those who actually pay for treatment? Mr Cardy: I can certainly illustrate for you the impact of charges on people with cancer. If we take a typical cancer career of perhaps nine months or so, from suspicion of cancer to referral for investigations to eventual admission for surgery perhaps and then repeat treatments, radiotherapy or chemotherapy, which would be the norm, we would see the costs to the patient piling up during the course of that time. In the course of hospitalisation they will be paying charges in hospital and they will be paying travel costs which because of the concentration of specialities in cancer centres, which is a perfectly proper and desirable move, it means that people are often travelling long distances, sometimes very long distances, and they will be paying car parking charges. When discharged from hospital they will be paying prescription charges. So costs, each of which is modest in itself, will be piling up very considerably for people who have this quite typical trajectory. That often results in very considerable hardship. We have quite a lot of survey data, which you have seen in our submission, but we also have the surrogate data that comes from our own grants. Last year we gave small grants to over 20,000 people in financial distress because of cancer. That is a very small proportion of those who will find themselves in financial difficulty. Quite a large proportion of those grants were for travel costs and associated matters. Costs for people with cancer mount up, they become very considerable and very burdensome. We have evidence of people having to make a choice between eating and being treated, which seems a shameful state of affairs to us. Q262 Charlotte Atkins: Do you think this is the sort of thing the NHS should be dealing with, these sorts of costs? It opens up a whole range of things. What happens if someone needs a hotel stay, maybe the NHS should pay for that too? Mr Cardy: The effect of the change in the pattern of cancer treatment, which is wholly desirable, that people send their time principally at home rather than in hospital has been to shift costs on to patients. Previously the Health Service would have paid hotel costs which now would run at about £200 a night per patient but those costs are met by patients and they are met in the form of travel, transport and parking costs. Q263 Charlotte Atkins: If we could just expand on that. You are saying that previously the NHS would have paid for an hotel? Mr Cardy: I mean the hotel costs of hospitalisation because that is where cancer treatment is carried out. Q264 Charlotte Atkins: You are not just talking about the patient, you are also talking about the family and friends as well when you are talking about severe treatment over a period of time. What I am asking you is do you think that the NHS should be paying for things like car parking, hotel costs? If we are talking about the regionalisation of a health service we could well be talking about patients having to stay overnight in an hotel rather than in the hospital. Do you think these are the sorts of things that should be paid for by the state? Mr Cardy: In Scotland, because of travel distances involved, it is by no means uncommon for hostel accommodation to be provided for people who have to travel long distances. Q265 Charlotte Atkins: What you do you mean? Mr Cardy: Provided and subsidised. Q266 Charlotte Atkins: Provided by? Mr Cardy: The NHS. Q267 Charlotte Atkins: What you are saying is that they provide hotel accommodation or they pay for it in the private sector? Mr Cardy: Provide hostel accommodation. If I can take up your other point, the thrust of health policy for the last ten years since the publication of the Calman-Hine report, which has had a very high level of support from Government and from all parties, has been to address the rather dire situation we were in with cancer treatment and cancer survival and the direction of travel has been to increase the number of people surviving cancer, which has been successfully done, to shorten the waiting times, to extend the number of people who are able to stay at home, to extend oral therapy so that people are able to take those at home. The goal of health policy as far as cancer is concerned and the direction of travel is very clear but these costs which are borne by patients and, indeed, their families, work against the direction of health policy as regards cancer. Q268 Charlotte Atkins: Does one not even out the other? You are saying there are some developments which mean that people can be treated at home, therefore there are less travel costs, less car parking charges and no need for an hotel. Mr Cardy: If you are treated at home with, say, hormonal treatments, and a lot of older men who develop prostate cancer will be treated with hormonal treatments, and women increasingly can be treated with oral therapies at home, you will be paying prescription costs for those drugs. The drugs that manage side-effects are extremely important, anti-nausea drugs for example, painkillers, drugs to manage things like damage to salivary glands and tear ducts and so forth. All of those will have to be met by patients as prescription charges at home. Had they been treated in hospital they would not have been paying those costs. Q269 Charlotte Atkins: Until they got out of hospital? Mr Cardy: Until they got out of hospital. Q270 Charlotte Atkins: Obviously if they take the certificate there will be a maximum for the year. Mr Cardy: Yes, of course. Q271 Chairman: Back to the general question. Mr Meadowcroft? Mr Meadowcroft: Parkinson's disease is a long-term neurological condition for which there is no cure. The main form of treatment is drug therapies and drug treatment is the mainstay of treatment. The average age of diagnosis is around 60-62, so most people with Parkinson's will be turned 60 and will be exempt. It is the substantial number of younger people for whom the prescription charges are a problem. How many people are affected by this, about 8,000 below the age of 60 with Parkinson's disease. Although they are a small group, at times they are facing real hardship. We consult our members each year on what their major priorities are for changes in health and social care and this issue of prescription charges and what is seen as being unfair since the 1968 list of exempt conditions always comes up in the top four or five and it is there now as a major priority for younger people with Parkinson's. Because the 1968 list was drawn up when it was most drug treatments for Parkinson's have been introduced since then and there are more recent treatments with more drugs coming through. Most people take several drugs at once, four or five is quite normal, and the costs are quite excessive. That is where the real pressure for change is coming from from our membership who wish to see this iniquitous system changed. Q272 Chairman: Rosie, in general terms which groups of patients are most disadvantaged by charges? Mrs Barnes: In the case of cystic fibrosis it tends to be very young adults, late teenagers and early twenties. Of the 3,500 or so adults with cystic fibrosis, it is estimated that roughly a third are still in full-time education and a third are too ill to walk and are on Income Support and are exempt. It is the remaining 1,000-1,500 we are very concerned about. These are people who have had poor health since birth and tend to be on very low income jobs because their education has been disrupted by health problems. However, they are young and they know they are not likely to live all that long and live life in the fast lane. They have a high cost of living because they have to eat far more than most of us eat even to retain a very low body mass index. They are very slender people because they find it difficult to absorb food, which is part of the condition. Also, they have deteriorating lung function so they tend to rely on cars and taxis more than the average simply because they cannot walk, they get very breathless. Although, of course, they can pay the annual cost which would be cheaper than paying by item, because these are youngsters and they want to pack what they can into their short lives they do not have very much money and £100 at that time seems a great deal so many of them do not pay it and then we do have the problem of knowing they are being prescribed drugs, particularly after a period in hospital. They take dozens of drugs. Lynsey, who is with me today, has brought an example of the sorts of things she would take on an everyday basis. If she brought all of her equipment and all her drugs she would need a suitcase and people would think that is a year's supply but that may be a week's or a fortnight's supply. It is those people who we feel are very disadvantaged by the current system. Q273 Chairman: Moira, do you have anything to add? Ms Fraser: From a mental health point of view, the people who are most significantly disadvantaged are the people on low incomes who do not meet the exemption criteria either because they are on Incapacity Benefit which brings them over the limit or because they are in no paid employment or part-time employment. I think that is quite significant currently with the push towards moving people back into employment. We are going to see a rising number of people who are on the peripheral edges of employment who no longer qualify for free prescriptions and who are also liable now for things like council tax and full rents on their accommodation, et cetera, and this can be quite a burden and can result in people having to make invidious choices: do I cash in my prescription or do I not? Also, people with mental health problems tend to have physical health conditions more commonly than the general population, so it is not uncommon for somebody to be on four or five different kinds of medication, which is often prescribed monthly but in mental health sometimes things are prescribed weekly, typically anti-depressants but also other things, tranquilizers, for example, or sleeping tablets. If you are on a low income and are being prescribed a drug weekly you are talking about £30 a month for one drug. If you multiply that with the other prescriptions it becomes out of the range of many people. Q274 Chairman: Could I ask you a specific question, Lynsey, in your unique role in a sense as a witness today. Could you give us an illustration of the effects on household budgets of paying for medicines to manage cystic fibrosis. Particularly, does this have an impact in terms of people seeking employment or pursuing education or training? Ms Beswick: Firstly, I would just like to point out that this is how many tablets I have. There are about 85 tablets, plus nebulisers three times a day. 85 tablets are what I have to take daily. I am surprised I do not rattle really. The basic costs that we incur every day are everyday things that most young people face, apart from the fact that because of our health we are sometimes limited as to the career pathways that we can choose which may have an effect on our jobs which may mean that we have quite low incomes. I am on lower support DLA but that barely covers my dietary requirements. I have to have a high fat, high calorie diet. I have parking fees, parking charges, travelling to and from specialised clinics, along with all the regular things that people my age have, such as a student loan and on top of that maybe setting up a house, rent or mortgage, and other costs, just generally going out and having a good time. If you add to that that you have to pay for a pre-prescription certificate every year, and it is guaranteed every year for life, for this vast amount of pills that I did not even want to take, there is not any incentive. Obviously if I do not take these pills it will have a detrimental effect on my health and also decrease my life expectancy overall. I do feel that it is such a shame that I have to pay for something where I have a life threatening illness and this medicine is keeping me alive but I have to pay for it and I have got to make allowances in my yearly budget for that. Q275 Chairman: Presumably you must do in terms of the actual amount as far as the medicines are concerned. You have mentioned travel, travelling to and from specialised clinics. What is your travel pattern in any one week or month? Ms Beswick: It varies from patient to patient. Q276 Chairman: I realise that. Ms Beswick: Personally, I travel to my specialised clinic. I live in York and that is in Leeds. Typically I will travel every six weeks to two months to my local centre for specialist care and on top of that maybe every few weeks to my GP to pick up my prescriptions and so forth. Q277 Mr Amess: Rosie, your colleague is certainly giving powerful evidence to the Committee. It still seems strange to see you that side and not on those green benches next to David Owen, those glorious days. If I can put my question to MIND because obviously everything the Committee has heard in the last couple of hours is saying that all is not well with charging but we have got to try to come up with some solutions. There is probably no more difficult area in terms of charging than for those people with mental health problems. Can you tell the Committee how the charges work, where the problems are, what the disincentives are and, most importantly of all, any solutions? Ms Fraser: In relation to prescription charging there are a number of other areas of charging which are also problematic. The particular problems are that it is very easy to go over the threshold and, therefore, no longer be eligible for free prescriptions. If someone is unable to purchase their prescriptions obviously this can have an effect on their mental health. I have a letter with me that was sent to me by one of our local MIND associations because they were being asked by social services if they could help. A young man they were in contact with, who has a diagnosis of schizophrenia, had been hospitalised for a number of months and was now in the community being supported by a community psychiatric nurse. He was in employment but very low paid employment and had periods off sick unpaid and could not afford his anti-psychotic medication and, in fact, had only filled three of his monthly prescriptions in the last year. They were asking a local MIND association, a charitable fund, for money from the crisis fund to pay for these, which they did. When we are moving towards a system where Government has indicated its intention to try and potentially force people to take medication in the community, here is a man who is quite happy to take his medication but cannot afford it because he falls over the threshold. That seems to me exactly the type of situation that just should not happen. There must be a more robust system which can be in place which can support people who are willing to take drugs that the doctor prescribes for them, not just for mental health conditions but also for their physical health, but cannot afford to do so. It seems to me it is entirely counterproductive. The ultimate consequence of that presumably is that he may well end up back in hospital if he does not have his medication. Medication is not the only thing which supports somebody with a mental health problem but for some people it helps. The cost of maintaining somebody in an inpatient hospital is enormous. For the cost of paying for his medication, a small cost, we could well have prevented it from leading to him needing hospitalisation. That is the kind of situation we need to start looking at. It is not only people with things like schizophrenia, I am particularly concerned about people with chronic depression and anxiety, for example, who are likely to be on low income, who are likely to be on the margins of employment or Incapacity Benefit and who may well have poor physical health. For them, getting access to help when they need it, by which I mean the drugs which will help them stay well, be those for mental health or physical health, is very important. If we do not provide those people with those drugs they are likely to become more unwell and require more care and treatment at great cost to themselves personally as well. That is the situation on prescription charging. There are also people who have been detained under the Mental Health Act who should receive care and treatment under section 117 after discharge from section 3 of the Mental Health Act but that system is very poorly understood. There is no failsafe means of enabling people to access that meaning that unless they fall into the low income bracket people do not get their medication free. Also, with the possibility of moving to a future situation where people could be compelled to take medication, we very much hope that situation will be looked at because surely you cannot compel people to take medication and then charge them for it. On the other side of the charging issue, there are many people who need to use services which are a long way from home, not only the high secure services, the high secure hospitals and medium secure hospitals. I was recently at a mother and baby unit in Welwyn Garden City, a fantastic unit and a much needed service. These services keep families together. They have families there who have come from as far away as Ipswich, which is a long way away, and it is absolutely vital for dads to come and visit regularly but it is too far to come on the bus, you cannot really get there unless you have a car, and you need to stay overnight. If you are on a low income it becomes very difficult. Without the family being able to spend time together it completely defeats the purpose of the whole service. The Social Inclusion in Mental Health report from last year laid out these issues very clearly. Social inclusion in mental health is absolutely vital to recovery. You need people to be involved in their communities and to continue to engage with a family member whilst they are away from home in hospital. We need to support people to do that where they do not otherwise have the income to do so otherwise there is no point in spending a lot of money on inpatient services if the things are not there to support them when they are discharged from services. Q278 Mr Amess: Thank you for that. To summarise: not much commonsense in the way the charges operate in your particular field and for short-term gain long-term needs are really suffering in that there are all sorts of extra costs. Ms Fraser: Exactly. Q279 Mr Campbell: To what extent is there evidence of patients paying for treatment recommended by their local doctor, such as counselling? Ms Fraser: I have got anecdotal evidence as long as my arm. Every day I get calls in saying, "my doctor has said I should be able to get cognitive behavioural therapy, counselling psychotherapy, but the list is too long" or "they are not even going to put me on the list because the list is too long". There is evidence of services closing the list at a six month deadline, so if the list is more than six months long they just close the list and do not take any more referrals so that they can say their list is six months long. Q280 Mr Campbell: So those who cannot afford to pay further down the line may cost the National Health Service more money? Ms Fraser: That person then has to choose. They can either wait in the hope that they might get on the waiting list or they can pay privately or not have anything at all. For some people not having anything at all is not really an option because in order to continue to function and keep their job and do all the things we do in life, bring up your kids, they have to function so they make really difficult choices about what to pay for. We did a survey two years ago on what people were paying for and we found that 45% of the group said they were paying for some aspect of their care and treatment and of those more than 20%, so in total more than 10% of the group, were paying for talking treatments which their doctor had recommended but were not accessible through the NHS. Given that the NICE guidelines say that for mild to moderate depression/anxiety talking treatments should be the first line it is fairly shocking that those are not available and people have to pay for those. Q281 Mr Campbell: It is costing more at the end of the day. Ms Fraser: Absolutely. If people do not get the help they need at primary care level we will end up with people much further down the line needing much greater intervention. Q282 Mr Campbell: Do you have any figures of such patients that you could give to the Committee, a rundown of how many patients fall under this net? Ms Fraser: I can give you copies of the research we did. I am not sure we have anything on how many people could have been helped at primary care level and ended up in secondary care because that is probably everybody. Everybody in secondary care could probably have had more help in primary care and it might have helped. For some people it might not have helped, it is very hard to tell. We are told very, very frequently, "I asked for help early, I was given nothing". What happens is that people are given nothing and they end up going off sick at work and from there on it is a vicious circle and after you are off work for more than six months there is a very small chance of ever being back in permanent work. The trick is to provide support at primary care level so that people can be supported and get the help that they need then before they get into the situation of needing to be off work, having problems with money, et cetera, et cetera. There just is not the resource there to provide the talking treatments that people need and it is one of the things where we really need much more investment in resource. Mr Campbell: That is certainly a point that needs taking up. Thank you very much. Q283 Chairman: Moira, can I ask you one brief question. You have talked about people in the primary sector having to go to the acute sector, or avoiding it. Give us your view on what is happening now on the non-residential treatment orders where people will be asked (a) to stay in the community under certain orders and (b) directed to take prescriptions and will have to pay for them. What do you think about that? Presumably if it was residential it would be free. Ms Fraser: Yes. It is something which has been indicated in the draft Mental Health Bill that that is what the Government's intention is. We have yet to see what that would look like. MIND is opposed to non-resident treatment orders entirely, full stop. However, if they were introduced it seems to me completely counter to natural justice that you should require someone to pay for something on which their freedom depends. We have no indication of how the system would work. We have no indication of whether it would only be certain drugs that would be laid out by the Mental Health Tribunal that would be exempt because it is the Mental Health Tribunal who will set the care plan for that person. Would the Tribunal say, "These particular drugs at these particular dosages are the ones that are to be exempt"? That is all very well but medication changes very frequently and you are not going to be able to go back to the Tribunal. How are we to know which are to be exempt? As I said before, people have physical health problems as well, so are we to be in a situation where some drugs are exempt and some are not. In that situation, if it were to come in, which I hope it does not, the only thing would be to make those people exempt from all prescription charges because by nature they are a very vulnerable group and their health is compromised as it is so it would seem to be sensible to make them completely exempt. Chairman: Thank you for that. Q284 Dr Taylor: Mr Cardy, in your written evidence in the summary you have got this sentence: "The Disability Living Allowance and Attendance Allowance hospital down-rating rules should be relaxed in recognition of the additional costs, including phone and TV charges incurred by hospital inpatients". Can you expand on that and explain that a little bit more to us? Mr Cardy: I am not an expert on the benefit system but let me do my best. The down-rating rule means that people who spend 28 days in hospital, either as a single period or over a period, will have their benefit withdrawn. We think this is quite wrong because costs do not cease, the costs of being in hospital continue, and we draw particular attention to telephone costs and so forth. We have given you evidence in our submission of the sort of scale of those costs. People in effect suffer double jeopardy. The onus of having a series of visits to hospital to report that they have had 28 days in hospital falls upon the patient and their benefit will be stopped and an overpayment will be reclaimed if they are discovered to have inadvertently not let them know. Q285 Dr Taylor: It is cumulative, is it, if you spend four separate weeks? Mr Cardy: If you spend 28 days, each of which is not separated by more than 28 days from the next then it mounts up. It may be over a short period with several long spells in hospital, it may be over a long period with many short spells in hospital. Q286 Dr Taylor: Have you any idea how many people are affected? Mr Cardy: In the sense of? Q287 Dr Taylor: In that they are caught in this trap. Mr Cardy: I do not think we can tell you the answer to what. What we are clear about is that Disability Living Allowance and Attendance Allowance are critical benefits for people with cancer who very frequently develop disabilities that make them eligible for these benefits which are compensation for some of the costs of disability. Q288 Dr Taylor: So how should we deal with the problem? Mr Cardy: Quite simply by removing the down-rating requirement. It works very, very adversely to people with cancer in particular who have these patterns of treatment. The down-rating was removed from all other benefits in last March's Budget and takes effect this April. I am sure somebody knows why it has not been applied to DLA and AA but it seems frankly bizarre to us. Dr Taylor: Another peculiarity. Thank you very much. Q289 Dr Naysmith: I have got a couple of slightly unrelated points to make and questions to ask from them. How do you see this situation developing in the future and are there new problems which might emerge with charges which can impact on patients? Moira has just referred to one under the Mental Health Act that might come in and produce a new situation. I wonder if I could ask Rosie first of all. The last time we met was when you were at the official opening of the cystic fibrosis unit at BRI in Bristol and we are very grateful to the Cystic Fibrosis Trust for all that happened there. Do you see anything happening in the future? Mrs Barnes: A bit like cancer, cystic fibrosis is a victim of its own success in its ability to treat patients at home. Because those with cystic fibrosis are primarily children, adolescents and young adults there did not seem any point in the extensive treatment regimes to keep them alive if they had to be in hospital all that time. We have worked very hard to ensure that with very expert support patients can stay at home most of the time. They will do their own physiotherapy, they will take their own nebulisers, and they will do their own intravenous antibiotics. We do suffer from a situation where what people get depends on where they live in terms of extra support. We do see that the treatment regime we have introduced which is keeping them alive will continue and will continue to make improvements until such time as we find a cure. The problem we have is that, as Lynsey has explained, it is a costly disease to live with. They have to eat a lot of food, they need a lot of transport help. Unless some of the hidden costs as well as the direct costs of prescription charges are dealt with people will not take the treatment that they need and it will shorten their length of life and reduce their quality of life. Q290 Dr Naysmith: Anybody else? Mr Cardy: Yes. In our submission we indicated that the demography and epidemiology of cancer has changed and the patterns of treatment have changed very much. Four out of five people now receive radiotherapy as outpatients rather than as inpatients, similarly with chemotherapy. The five year survival rates - five years is normally regarded as the test for survival of cancer - have risen considerably, happily, so 80% of women who develop breast cancer can now expect to live five years or more whereas 30 years ago it was only 50%. These trends are going to continue. This is all very good news. The effect of the way in which costs are incurred mean that these are being transferred, so patients have to incur large and increasing costs in order to undertake life saving treatment, which to us seems morally wrong that that should be the case. Mr Meadowcroft: I think in the future much the same will apply to Parkinson's disease. We are looking at new drug therapies coming on stream to deal with the symptoms today. There is a huge research push for breakthrough therapies. There is cell therapy, stem cell research at places like Frenchay and other places, or in neuro protection, trying to identify those most at risk and to find a medication that will stop the disease progressing. There are real problems today living with the condition below the age of 60 but longer term the new treatments, and there will be breakthroughs, will have a cost to them as well, inevitably so. Q291 Dr Naysmith: The other point I want to check on is we will obviously be looking at the list of conditions where there will be exemptions because of the fact that it is a bit of a muddle at the moment. We want to get an idea of what the likely costs of any changes would be. Can you estimate what it might cost the NHS to add the conditions that your organisations deal with in these four rather diverse areas of disability and disease? What would the costs be if you came along and said, "We want exemptions for some of our people" and how many people would be involved now? Mr Meadowcroft: I cannot give you a precise figure but I can give you a ballpark figure. There are around 8,000 people with Parkinson's disease below the age of 60 affected by this, some would have an exemption anyway if they receive Income Support. If we take the assumption that most of those would benefit, we would have a figure of around £1 million a year. That is the best figure I can give you. It is not robust but it is about £1 million a year, I think. Mrs Barnes: For cystic fibrosis not much over £100,000 calculating it at the annual rate which people are paying currently if they are on the annual rate. It seems ludicrous to have caused so much ill-feeling for a cost of around £100,000 on a drug budget which is over £6 billion. It seems ludicrous that the exempt list has not been reviewed. I think the Cystic Fibrosis Trust and those affected by cystic fibrosis would accept the situation if it was decided to abolish the exempt list and treat the whole situation differently, but if there is going to be an exempt list based on severity of condition and need for medication there is absolutely no reason for cystic fibrosis not to be on it. As you will have gathered, the only reason it is not on it is that when it was drawn up most people with cystic fibrosis did not live until adulthood so they were covered by the fact that they were a child. The considerable ill-feeling that those with cystic fibrosis bear on this matter is the fact that they were promised that this would be reviewed - it was cited as an example - and it seems a huge injustice compared with the conditions that are on the list. Q292 Dr Naysmith: Have you put it to the Government and asked them why it is not on the list? Mrs Barnes: Repeatedly. Q293 Dr Naysmith: I have done it as well and I get the same answer. They are constantly reviewing it. Mrs Barnes: I have asked them have they ever been given any medical evidence by any authoritative body which says that cystic fibrosis does not meet the criteria to go on the exempt list and they have not answered that question. Q294 Jim Dowd: I am sure it is here somewhere, but has the list changed much over time? Mrs Barnes: It has not changed. Q295 Jim Dowd: At all? Mrs Barnes: They have not reviewed it. Q296 Jim Dowd: Since? Mrs Barnes: 1968. The only reason I can possibly put forward as to why it has not been changed is that there are conditions on it which perhaps affect a great many more people than cystic fibrosis who should no longer be on it and they would all be terribly aggrieved if they were taken off. If you opened the list there would be a queue of conditions wanting to go on it and there may be some that were eligible in 1968 but for which treatment has improved so dramatically they no longer need to be on it. Of course, once you are on it you get everything free, it does not matter whether you have got bunions, the flu or whatever it is, whereas cystic fibrosis patients, who have to have this huge quantity of daily medication, are not on the list. It does cause them a disproportionate amount of anger. They are always sending me petitions and writing letters and wanting to come and march on Downing Street. Q297 Jim Dowd: Let us ask Lynsey what she thinks about it. Ms Beswick: There are other illnesses that are related to cystic fibrosis. For instance, I suffer from arthritis which is related to my cystic fibrosis and that requires extra medication and extra hospitalisation time due to my cystic fibrosis and that is an extra cost caused by cystic fibrosis that I have to pick up the tab for. I do think it is a crying shame that we cannot get our prescriptions free when we are having all this medication every day. We do not want to take it, we did not ask to be born with cystic fibrosis. I think it should be reviewed, it is ludicrous that it has not been before now. Mrs Barnes: As well, 15% of adults with cystic fibrosis develop diabetes which is another sting in the tail and another horrible thing to have to deal with, but that is on the list. The minute they get diabetes they then get all the rest of their cystic fibrosis drugs free. The doctor breaking the news says, "You have now got cystic fibrosis related diabetes. That is the bad news. The good news is you do not have to pay for your prescriptions any more". Some nurses and doctors who are a bit more imaginative tell them to tick the box to say they have got a fistula. There are people here who probably know better than I do what a medical fistula is. Many people with cystic fibrosis have something called a portacath which is a device implanted into the chest to access the veins more easily for intravenous antibiotics or they will have PEG feeding whereby they have a permanent tube fixed into their stomach so they can be fed overnight to maintain a more reasonable bodyweight. The more imaginative nurses will say, "As far as I am concerned that is a fistula". I do not think it is actually but the pharmacists do not get into the nitty-gritty. The doctors and nurses do try and help them because they are so young and they know there is a danger to them if they do not take what they are prescribed. Ms Fraser: In terms of the cost, obviously mental health is of a different scale from the two kinds of conditions you have heard about. One in four of the population experience mental stress at some point in their lives. Not all of those end up being a diagnosable mental health problem that is ongoing. You are talking about a significant number of people. I think we have got to look at it in the round. What is it that we are trying to achieve with the National Health Service? Are we just patching people up who have got to a critical stage in their lives, who have got to the point of being on a low income or are chronically unwell, or are we trying to support people's health and wellbeing and support people who are potentially very vulnerable to stop them from getting more unwell in the future? I know it does not come from the same budget and it is not easy to count but the costs of prevention far outweigh the costs of things like hospitalisation later on. Whilst the cost in terms of revenue that is not clawed back from people may be relatively high, the saved cost is much, much higher, not only in terms of hospitalisation but in terms of benefit levels, in terms of contribution to the community and all the other factors that we know about. Mr Cardy: As far as prescription charges for people with cancer are concerned, the DH tells us that it does not keep that data but it has recently estimated that exempting terminally ill people from prescription charges would cost about £2 million which in terms of the overall cost of cancer treatment and care is a very modest amount indeed. Perhaps I could just allude to a couple of things that we have not mentioned yet. One is the cost of car parking. We have the strange situation where this is one of the freedoms that hospital trusts have to fix car parking charges and some of them use it as an important revenue stream at the expense of patients and, as we point out, at the considerable expense of cancer patients. The other is the Hospital Travel Costs Scheme. The cost of parking is very often well publicised in hospitals but the existence of the Hospital Travel Costs Scheme is not. In many hospitals there is no enthusiasm for making knowledge about the scheme available and it is very, very tightly means-tested. Our view is that this should be liberalised also and that it should be much more widely available to people affected by cancer. Q298 Charlotte Atkins: You have all argued for exemptions in various forms, how would you raise money without charges? Mr Cardy: Perhaps I could respond to that by saying that I think the decision making is not joined-up. With the change in the pattern of cancer treatment that I have described, that others have related to the conditions with which they are concerned too, it is clear that it is part of the policy and practice of hospital trusts to save money by delivering treatment outpatient rather than inpatient. There is really no connection between that saving and the cost that is transferred to patients. I do not believe in the end that there is any other place to go other than general taxation, except I would say this: in the course of last year Macmillan Cancer Relief put about £70 million into the development of NHS cancer services, so we do feel that we have made a contribution. Mr Meadowcroft: I think I would make the same case too from the Parkinson's Disease Society's point of view. We have funded nurse specialists in Parkinson's to the tune of £4.5 million over five years, so we do input. In terms of an equitable approach I think it should be through general taxation that would avoid means-testing and it would reach more people. We would support that. Mrs Barnes: The Cystic Fibrosis Trust has not argued for prescription charges to be abolished altogether simply based on our own experience. We provide a lot of free services for those with cystic fibrosis, including conferences. If we have a conference and we ask people if they would like to come, we might get a list of 300 or 400 and we organise the day and pay for their food for the day and only 200 turn up perhaps and we have paid for 300 lunches and people have not come. If we charge them £5, which is only a token amount, we get a much more realistic list. We have viewed prescription charges in very much the same way. For routine and occasional matters people should be able to pay and it makes sense in feeling you are getting something of value, you are not taking it frivolously, you are taking it seriously. In terms of reducing the costs for those with cystic fibrosis, if they were exempt from prescription charges it would probably have the effect of keeping many of them out of hospital for longer because those with cystic fibrosis get very ill, they throw themselves on the mercy of their CF team who immediately admit them for a week or two to look after them properly and that will mean giving them all the drugs and medication they need, giving them in-hospital physiotherapy twice a day and ensuring that they get a high calorie diet. Many hospitals go to a lot of trouble to make sure that those with CF can eat properly. They tend to eat later in the day than most people, partly reflecting the fact that they are so young but partly reflecting their condition. For example, in the Bristol Royal Infirmary all cystic fibrosis patients are allowed to go to the doctors and nurses' dining room if they want to during the night to eat. There is never many of them but it gives them an opportunity to be fed. If you think of hospitals taking patients in for a week or two at considerable cost, £1,000 for the hotel and catering aspect of it never mind for the drugs, to look after them better at home would save the NHS money in the fullness of time. Ms Fraser: One of the things we can do is look better at the pre-payment system. We would argue for free prescriptions for all but in the absence of that, as we have heard from other people today, the amount that people are required to come up with to get that Pre-payment Certificate is prohibitive. A scheme which would make that easier would help. There is an example I know of, somebody pays £2 a week to a local MIND group and at the end of the year they give them a cheque to pay for their annual Pre-payment Certificate. £2 a week might be manageable but even £10 a month might be too much to come up with at once. If you are on a very low income these are considerable amounts of money. I think we need a tapered approach so it is not all or nothing. At the moment we have got a "you are either in or you are out" approach and for those people who are on the margins that is very inequitable. Having some kind of tapered approach where you can pay a little bit but not the full lot might be better than the system that we have now. Chairman: Could I thank you all very much indeed and apologise for the lateness of the ending of this session. It has been a very good session. Thank you for bringing your experience to us, I hope it will be well-used in the next few weeks. Thank you. |