CORRECTED TRANSCRIPT

HOUSE OF COMMONS

REPRESENTATIONS

MADE BEFORE THE

BACKBENCH BUSINESS COMMITTEE

BACKBENCH DEBATES

TUESDAY 6 JANUARY 2015

CAROLINE LUCAS and DEREK TWIGG

JOHN HEMMING

FABIAN HAMILTON, NORMAN BAKER, CATHY JAMIESON and CRISPIN BLUNT

ALISTAIR BURT, CHLOE SMITH, JASON McCARTNEY, MR GEORGE HOWARTH, MRS ANNE MAIN, SIR OLIVER HEALD, NIA GRIFFITH, JESSICA MORDEN, RICHARD FULLER and MR RICHARD BACON

LAURA SANDYS and MRS CHERYL GILLAN

Evidence heard in Public

Questions 1 - 28

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Representations made before the

Backbench Business Committee

on Tuesday 6 January 2015

Members present:

Natascha Engel (Chair)

Sir David Amess

Mr David Anderson

Bob Blackman

Oliver Colvile

Mr Nigel Evans

John Hemming

Ian Mearns

Caroline Lucas and Derek Twigg made representations.

Q1 Chair: Before we start, one of our members has been elevated, so congratulations.

At the moment, we only have Thursday 15 January to allocate. We also have Westminster Hall on 15 January as well, which obviously is three hours. Do you want to kick off? You have "Building sustainable…GP services".

Derek Twigg: Thank you for hearing this and taking the time and trouble to look at the application.

We all know, as Members of Parliament, that there is a big issue at the moment in our constituencies around access to GPs-and not just access, but finding the right GP. Some GPs’ surgeries, of course, are under the threat of closure. This obviously has a knock-on effect in terms of what we are seeing in the news today: attendance at A and E and general pressures on the NHS. Certainly numerous constituents have contacted me about their difficulties with accessing GPs, and also accessing their GP of choice, which is a major problem as well.

We know that the Royal College of General Practitioners has been raising the concern about funding and access to GPs, and over 300,000 people signed a petition. It is also an important point in terms of early diagnosis. If you cannot see your GP quickly enough, it can impact on your early diagnosis of particular diseases. Cancer is often used as an example. If not all the parties, certainly Ed Miliband and David Cameron have made statements about needing to increase the number of GPs, and that is obviously going to play an important part during the election. Prioritising access to GPs has been an important part of what this current Government have been saying.

Clearly there is a problem with accessing GPs at the moment. We believe it is a widespread problem that many MPs are concerned about, and it certainly must have been raised with many MPs by their constituents. I don’t know whether Caroline would like to add anything to that.

Caroline Lucas: I simply add that I think the pitch we would like to make is for a three-hour debate in the main Chamber. The reason for that is we have a votable motion, as I think you have seen in front of you, and just because of the sheer numbers of people that we expect will want to speak on this. There was absolutely no trouble at all in completely filling the box here of Members who want to speak. We know that access to GP surgeries and then the knock-on impacts on A and E and so forth is an issue countrywide. For the reason that we think the debate will be very highly subscribed, and that it is so topical and interesting to the public generally, we would like to make the pitch for three hours in the Chamber.

Q2 Chair: Could you just read out the text of the motion for the record?

Caroline Lucas: It is a bit long: "That this House notes the vital role played by local GP services in communities throughout the UK, with an estimated one million patients receiving care from a family doctor or nurse every day; believes that the UK’s tradition of excellent general practice provision is a central factor in the NHS being consistently ranked as one of the world’s best health services by the independent Commonwealth Fund; expresses concern, therefore, that the Royal College of General Practitioners…through its Put patients first: Back general practice campaign, is warning that these services are under severe strain, with increasing concerns raised by constituents about access to their GP and 91% of GPs saying general practice does not have sufficient resources to deliver high quality patient care; further notes that the share of NHS funding spent on general practice has fallen to an all time low of 8.3%, and that over 300,000 people across the UK have signed the campaign petition calling for this trend to be reversed; welcomes the emphasis placed in NHS England’s Five Year Forward View on strengthening general practice and giving GPs a central role in developing new models of care integrated around patients; and calls on the Secretary of State for Health to work with NHS England and RCGP to secure the financial future of local GP services as a matter of urgency."

Chair: It is very comprehensive. As I said, we have quite a lot on our list at the moment, but we all appreciate the urgency of it as well, certainly from case loads and things. Unless anybody else has any questions, I think that really covered it. Thank you very much.

Caroline Lucas: And do you expect further dates in February and March even though you do not know what they are yet?

Chair: Yes. We are expecting every Thursday, unless something else happens.

John Hemming made representations.

John Hemming: I will start by reading the motion that I hope to table, which is on the paper in front of everybody: "This house is concerned about widespread reports of failures in the operation of public family law and invites the Justice Select Committee and the Education Select Committee to establish a joint subcommittee, or take what other action they see fit, to take evidence including evidence relating to individual cases in order to investigate and determine systemic flaws in the system and that the restriction on standing order 152 on the justice select committee considering individual cases be dispensed with to the extent of considering what may be evidence of systemic flaws in the system."

Although the application form says, "suggested time to allow for debate", I am really looking for an end-of-day debate. I apologise to the Backbench Business Committee for not having a full list of names, as I focused on speaking to the Chairs of the Education and Justice Committees, to which the motion refers, as it would enable them, if they saw fit, to do things that they could not otherwise do. That is the objective of this.

Q3 Chair: What did they say?

John Hemming: Alan Beith asked if he could use the word "invites" rather than "instructs", which is entirely reasonable, so the motion now has the word "invites" in it. Graham was quite comfortable with it. Obviously, there will be some work done on this. We are really looking for an end-of-day slot that may pop up at some stage-we just do not know what is going to happen over a period of time.

There is not an immediate, desperate urgency. The Council of Europe has been investigating the matter in the UK and may be reporting this month. The difficulty with the Council of Europe has been that the rapporteur of the inquiry is Russian, and the Russians’ annexation of Crimea and their involvement potentially with issues in Ukraine has caused difficulties in publishing the report, which I expect to be done this month. It would be nice for this Parliament to be looking at things in the UK that are being looked at by supra-national bodies, including the European Union’s petitions committee, which has considerable concerns in this area.

I expect the Committee to inform me that I need some more names, and I expect to do so before there is an opportunity to put this forward.

Chair: Sure. Also, we will have to speak to Alan Beith and Graham Stuart just to make sure.

John Hemming: Yes, of course. We will have to liaise and ensure that everybody is happy, because it is important that the Select Committee Chairs are comfortable with what the motion says.

Chair: That is pretty straightforward as well. Thank you.

Fabian Hamilton, Norman Baker, Cathy Jamieson and Crispin Blunt made representations.

Q4 Chair: This is on self-determination and Tibet.

Fabian Hamilton: Chair and members of the Committee, thank you for this opportunity to request a three-hour debate in the main Chamber. Tibet is an issue that has caused controversy for the past 60-plus years-since the Chinese invasion in 1951 and the Dalai Lama fleeing for his life in 1959. The Dalai Lama is no longer the political head of the Tibetan people but he is still their spiritual leader, and is revered throughout Tibet by Tibetan people; yet to display his image or the Tibetan flag is a criminal offence.

The Chinese-who, as the Dalai Lama likes to joke, have really good cuisine, and are able to defend the Tibetan people with their armies in a way that Tibetans cannot-are trying to eradicate Tibetan culture altogether. There is plenty of evidence for that. The Tibetan language, which is a distinct and separate language, is not taught in most schools. Tibetans are forbidden from talking to each other in the Tibetan language in the workplace. Any objection to Chinese rule is dealt with very harshly. There was the case of the film maker, Dhondup Wangchen, who made a film criticising the Beijing Olympics of 2008 and has just been released from his six-year sentence for daring to criticise how the Chinese were running the Olympics.

This issue has cross-party support. We are looking to ask the House to support the right of the Tibetan people to self-determination-not independence, but self-determination-within China to be able to speak their own language and practise their own religion without fear, because that is the current position.

Q5 Chair: At the moment, it is not a substantive motion. You just want a general debate on the self-determination of Tibet.

Fabian Hamilton: Yes, indeed.

Chair: And you want three hours in the main Chamber. Normally, for three hours in the main Chamber, we would need about 15 names. Have those been supplied?

Fabian Hamilton: I do not think that they have, but we can supply them quite easily. Crispin is suggesting that, in fact, it would be helpful to have a substantive motion, which would be very straightforward: "That this House supports the right of the Tibetan people to self-determination within the People’s Republic of China."

Q6 Chair: You have to decide whether you want a substantive motion or not, simply because if there was the possibility of a vote, that would have an effect on our scheduling. If you can decide that and get back to us with more names, that would be really helpful.

Fabian Hamilton: I am happy to do that.

Norman Baker: May I just add one thing? The position of Britain in respect of Tibet is unique because we actually undertook bilateral relations with Tibet at a time when it was clearly operating as an independent country between 1911 and 1950, even to the extent of signing treaties with the Tibetan Government at the time. Tibet was, of course, a closed country, but Britain had access through our Indian operations at the time. We are therefore uniquely positioned to be able to testify to what the position was. We are probably better informed as a country about Tibet and its history and culture than most countries. The Tibetans certainly look to the UK and the UK Parliament to take a position in a way that they do not with other countries.

Crispin Blunt: If you were looking for a subject that is really pitched at a Back-Bench debate on a substantive motion, which is why I hope Fabian will go for that option, this is one that enables Parliament to give a view of where parliamentary opinion is on an issue on which the Government obviously find it impossible, for reasons of relations with China, to say anything substantive at all.

Cathy Jamieson: I do not think there is much more to add. The last point is very important. I realise that there are many sensitivities around this, and this would be an opportunity for Parliament to debate in the proper forum and to take some positions, and it would allow people to speak up for the Tibetans.

Fabian Hamilton: May I just add, in conclusion, that this is a controversial issue? Not every Member of this House supports the right of Tibetans to self-determination, so there will be a proper debate.

Chair: That is very helpful. Thank you.

Q7 Oliver Colvile: Thank you for coming to see us. I am very curious to know how you think the Chinese will react to all this.

Fabian Hamilton: Personally, I do not think that that is the issue here. The Chinese are very sensitive to any meetings, for example, with the Dalai Lama or to any mention of the Dalai Lama. When the Prime Minister and Deputy Prime Minister bravely met the Dalai Lama when he was given the Templeton prize in 2012, they cut off all high-level meetings for six months. There is no doubt that governmental attitudes towards Tibet will have an effect on Anglo-Chinese relations. Whether this House making a judgment and passing or not passing a substantive motion would have an effect, I cannot say.

Oliver Colvile: I went to visit the Dalai Lama’s monastery-indeed, I think others might have been with me-and I played cricket just outside it. It was very interesting to go and have a look at it.

Crispin Blunt: An additional point: it would be worth the Committee considering how the Chinese have treated the visa application for the Chairman of the relevant Committee. This may be an opportunity to make a suitable parliamentary riposte to their behaviour.

Q8 Chair: Thank you very much. Is there a time restraint on this?

Fabian Hamilton: No, there is not.

Chair: As I have said to others, we are expecting to get most Thursdays between now and when we break up.

Q9 Mr Evans: How many people do you think would be interested in taking part in this debate?

Fabian Hamilton: I would not be surprised if 50 Members sat in the House for this debate, because it raises passions on both sides. There are people who think that the Tibetans are well treated by the Chinese, that they have sufficient autonomy and that any further autonomy is entirely unnecessary. They will speak out on that basis. We happen to think the opposite.

Q10 Chair: Will you send us names of people who you know will be willing to participate in the debate? That would be really helpful.

Fabian Hamilton: Of course, together with the substantive motion.

Alistair Burt, Chloe Smith, Jason McCartney, Mr George Howarth, Mrs Anne Main, Sir Oliver Heald, Nia Griffith, Jessica Morden, Richard Fuller and Mr Richard Bacon made representations.

Q11 Chair: That’s a big team!

Alistair Burt: It is, but it demonstrates amply the degree of interest in the subject that we wish to raise, which I am sure that the Committee is well apprised of.

The background to this is the ongoing concern about the problems caused by the use of contaminated blood in blood transfusions in the 1970s and ’80s. The issue has been raised before because it has never satisfactorily been dealt with in the minds of the victims and sufferers and is an unclosed issue. It is perhaps the last unclosed scandal in the health service-the last one that has not been adequately dealt with.

Some 5,000 people were infected and perhaps 1,700 or 1,800 of those have already died. Of the 1,200 who were co-infected with hepatitis C and HIV, only 300 are left. Their financial circumstances vary. Attempts have been made over the years to try to deal with the issue, but not effectively and not properly, which is why it hasn’t gone away.

Q12 Chair: On that point, contaminated blood was the subject of the second ever debate that we scheduled as a Committee. Was it Geoffrey Robinson who led the debate then?

Alistair Burt: Was that back in 2010?

Jason McCartney: October 2010.

Chair: What was interesting about that was that we always used it as an example of the effectiveness of the Backbench Business Committee in bringing forward things that otherwise would not have been debated. At the time, it turned out that the Department of Health figures were completely wrong, in terms of the compensation payments that it was anticipating it would make, and the then public health Minister said that she would bring forward a package of compensation measures. The reason why I am very interested in this is that it is a really good example of following up something that we scheduled a long time ago. Could you just let me know what did not happen as a result of the debate in 2010?

Alistair Burt: Although this Government, like previous Governments, have tried to settle the issue, it has not been adequately dealt with in the minds of those who have suffered the after-effects, and that is for several reasons. First, as the Committee is well aware, there has been no public inquiry in England on this matter. There has been no opportunity to question directly, and have answers from, Department of Health representatives. Scotland has recently been through a public inquiry-the Penrose inquiry. It is about to report, but we do not know quite when; that has not yet been announced.

The reason for bringing this application to your Committee is that we would not want this Parliament to conclude without a further opportunity to raise with the Government how serious the situation is. Although some changes were made at the beginning of this Government, as I indicated, they have still not fully satisfied those involved. The all-party group-Jason will speak about this in a second-has conducted a survey about the adequacy of the arrangements for payments to victims through the various trusts, which have been found wanting. Members themselves have conducted a survey of those who have suffered. In December, we asked a number of sufferers to contact their MPs to say, "This has still not gone away. We want an opportunity for it to be closed." There are now 100 Members of Parliament in contact with us about the issue. Penrose is about to report, and the reason for seeking a debate, and for seeking very much a debate in the Chamber, is to give the Government an opportunity to say what their thinking is.

Colleagues may recall that I asked the Prime Minister a question in October 2013. He has a constituent who is involved. He offered to be personally engaged, which he has been. No. 10 and the Department have been working on this since October 2013. Much has been postponed because of the Penrose inquiry, but we now think that we know enough to raise a full-scale debate, with a lot of colleagues involved. We have been in contact with both Front Benches-Opposition as well as Government. There is no party politics in this, because successive Governments have been implicated in it not being closed and successive Governments have tried to deal with it. This is an attempt to bring out, as best we can before the close of this Parliament, the current issues to inform both Front Benches prior to the release of Penrose. We believe that sufficient colleagues are concerned to raise it in a full Chamber.

Jason McCartney: I spoke in that debate in October 2010. The Chamber was packed, as was the Gallery. I am co-chairman, along with Diana Johnson, who sends her apologies-she is now on the Front Bench. It is very timely that, next Wednesday at 1.30 pm in the Wilson Room, our all-party group on haemophilia and contaminated blood will be launching an in-depth survey of the infected community-the biggest that has ever been done. We used YouGov. We have had two people working on this full time for two months, along with the Haemophilia Society, and it is on the operation of the existing funds and trusts that were set up, primarily the Macfarlane Trust, the Skipton Fund and the Caxton Foundation, which are not operating particularly well. If we had the debate next Thursday, we would have a dossier of documentation, as more than 1,000 people have been in contact with us about it. This is not just a quick thing; we have spent months on this and we are launching it next Wednesday.

More than 75 MPs in the past month have been directly communicating with those in the infected community. They are dying week by week. This is exactly the sort of thing that I came to Parliament to get involved with and we would relish the opportunity in the main Chamber.

Mr Howarth: I want to make a quick point. In every generation there are four or five example-a handful-of what I refer to as debts of honour, and this is one of them. Secondly, I think we would all agree that we are at the point now where the Government are listening. Parliament should express an opinion on this and I think this is the ideal time to do it.

Mrs Main: I have a constituent, Nicola Enston-Jones, and her concern is the ongoing impact on families. It is not just the victim themselves, but the entire family, and they feel somewhat forgotten and caught up in a system that is not working terribly well for them. She has not benefitted well out of the system. They look to us not to allow a complacency to occur and lose any impetus to ensure that there is justice for all of them, not just the few who are very obvious cases of injustice.

Q13 Sir David Amess: Alistair, that was a very impressive deputation; this is the way to organise things. As the Chair has said, I am pretty sure that I took part in the inquiry into this quite a long time ago when Patrick Jenkin led it. I can remember the undertakings then and we spend quite a few sessions on all this. In my naivety I thought everything had been settled, so I am horrified, given that we have got the piles of evidence that we took then, that nothing has changed. I am horrified.

Alistair Burt: Over the years, there has been a gradual release of documents by the Department of Health. There was, of course, the inquiry led by Peter Archer, which was privately put together and supported by Alf Morris and that did a great deal of work in the absence of a public inquiry. More documents have been released in relation to Penrose and I understand there may still be some documents to be released.

I think people want to know, above all, what happened, and an opportunity to at least question some representatives. It might not be a full public inquiry-we will talk about that in the debate-but your sense that it hasn’t been settled, and your horror, adequately represents those who come across this sometimes for the first time. A number of sufferers aren’t public about it and they have had to be persuaded to go and see their MPs because they have kept it quiet. By going to their MPs we have had new MPs coming to us saying, "We didn’t know. What can we do to help?" That is why we think the timing is right now.

Jason McCartney: Remember that these people have had blood transfusions through accidents or through being haemophiliacs and were given CJD-mad cow disease-HIV and hepatitis C. I have had two constituents come to see me and one of them hasn’t even told extended family members about it.

Q14 Oliver Colvile: Do you think that one of the reasons why the Government is being quite careful and not moving particularly fast on this-probably as fast as a snail-is concern about what the financial implications might be?

Alistair Burt: Genuinely, we don’t know. It is not the first time that it has come up. Yes, there are financial implications, of course there are, but there is a more important issue. Over the years, people feel that Government haven’t been open for a whole variety of reasons. They think that things were covered up. Documents were lost and destroyed in error. The degree of suspicion around this is huge, and those who suffer vary. There are some who are extremely bitter and very angry, and it is sometimes quite hurtful to deal with. I don’t think any of us has anything to say against that because of people’s experiences. There are others who have looked at it in a much more practical way and are getting on with their life, but they still want to know, and they probably want a direct answer to that question from the Government.

As I suspect one or two of us will say during the debate, the UK Government-the previous Government, the current Government and other Governments before-bailed out the banks and compensated Equitable Life claimants. You can make a list of people, running to billions of pounds, whom this country has supported in one way or another. There are sufferers who are going cap in hand to charities and being turned down when they need help to run their homes, and I don’t think that is good enough. If there are financial implications, it will affect all parties. That is a point that we have to make, but it is not for us to answer; it is for them.

Jason McCartney: In this Parliament, two big wrongs have started to be righted: Hillsborough and Bloody Sunday. I think this is another major wrong.

Q15 Chair: I think the Equitable Life people would add their names to that list, too.

Jason McCartney: I am talking about life and death.

Q16 Chair: That is fantastic. Thank you very much. I appreciate the urgency. We will take into account the fact that you have this launch on Wednesday, and we will see whether we can do something more quickly. We have a very long list of applications, and they are all highly topical. We only get Thursdays, and it isn’t every Thursday. It is for three hours. Do you think three hours are sufficient?

Alistair Burt: Yes. I think that is probably about right. The importance for us is the Chamber. The last time this was aired by our good friend Paul Goggins in Westminster Hall, and the people who came to watch were crammed into that space. As Jason said, the original debate, which you kindly scheduled in 2010, filled the Public Gallery. There is huge interest in this, and there will be more over the next few months. I think the Chamber is key for us. The motion is very general at the moment.

Q17 Chair: Will you read it out?

Alistair Burt: Yes, but it might be changed to a degree: "That this House supports a further review of the circumstances surrounding the passing of infection via blood products to those with haemophilia and others during the 1970s and 1980s and the ongoing consequences affecting sufferers and their dependents." That is very broad to allow colleagues to raise any part of this issue that they wish to raise. If you allow a debate, the motion might be tinkered with.

Q18 Chair: Okay. If it is a general debate, we will work on the motion with you. Thank you very much. We are making a decision on scheduling only 15 January. We have a lot on, so it is unlikely, but if we were to allocate 15 January, would you be able to make that date?

Alistair Burt: Yes, we could do it. Equally, if it was the following week, or the week after that, it would still be relevant. It is not an immediate thing, but we feel that it has to be done.

Jason McCartney: It fits in with our report.

Q19 Chair: Exactly. That’s right.

Alistair Burt: Next week would fit in very well.

Chair: Thank you very much for coming.

Laura Sandys and Mrs Cheryl Gillan made representations.

Laura Sandys: Thank you very much for asking us to present to the Committee. Epilepsy is a Cinderella condition that is underplayed and under-recognised, but it is the most common neurological condition. It affects both older people and, particularly, children, on whom it is has a dramatic impact. One in 100 people have the condition and many people, with the right diagnosis, may be treated, which can ensure that they have a seizure-free life, with all the potential that that offers. However, a recent report published by Epilepsy Action says that, in its survey of all CCGs, only 19% of strategic needs assessments mention the word "epilepsy"-there is no provision for anybody beyond that 19%. Of those 26 CCGs, only three have provided evidence that they will be making any plans for people with epilepsy. This is something that probably impacts 700 to 1,000 people in each of our constituencies. Because of misdiagnosis, it is considered that 42% of deaths-there are several thousand deaths a year from epilepsy-could have been prevented.

We have been a lost condition. I am epileptic myself. Statistically, there should be six Members of Parliament. Only two of us have declared, so we are waiting for the other four. Perhaps at this great debate they will come forward and present themselves. We have a condition that has stigma and has been very much downplayed. It is absolutely crucial that we ensure people who could have a very full life are given the provision that they require not at huge cost, but with a little bit more thinking by CCGs across the country.

I am pleased to be able to put forward our motion, which highlights the report. We believe there should be better planning and commissioning of services for adults and children with epilepsy at the clinical commissioning groups and health and wellbeing boards across England. We want to send a clear message that this House cares about those people with epilepsy and expects them to get the standard of care that they deserve.

Q20 Chair: How essential would it be to have a votable motion?

Laura Sandys: I think it is about raising awareness and being absolutely clear about different constituencies’ experience, and ensuring that the message goes out clearly to the Department of Health and to NHS England that the current situation is not acceptable.

Q21 Chair: But you think that in a general debate, that would not be possible to do?

Laura Sandys: I think so. Absolutely. I think it would also ensure that constituents came forward and contacted Members of Parliament to ensure that their particular cases were put forward, too. It would generate interest nationally, through the organisations that represent people with epilepsy, but collectively, with the voice of Parliament behind that, it would send an important message.

Mrs Gillan: I speak in support of Laura. This is an overdue debate for us to have. I have to declare an interest, because the Epilepsy Society is headquartered in my constituency. It was founded in 1892. It was originally founded to help people who suffered from epilepsy to get work. In 2011, it changed its name to the Epilepsy Society, but a lot of people know it as the NSE, the National Society for Epilepsy, and it engages in full medical research. There is a timeliness about this debate. I am not sure whether this is accurate-it can be checked-but I think the last debate was a half-hour debate that Kate Hoey had on 29 June 2013.

I happen to know that all the epilepsy charities are lining up to lobby every MP about policy in this area, particularly in the light of this latest report. There is not a single MP in this place, or candidate who will be standing, who will not have quite a few constituents who are not only affected by this, but will want to know and will want to hear in advance what the Government have to say about this important area.

What is important is that epilepsy appears to be poorly prioritised. Anything we can do to raise awareness in this place is important. I do not think it needs, as Laura says, a votable motion. I think it needs the opportunity for colleagues-perhaps even colleagues on this Committee-to bring this experience to the House of Commons so that the Minister has it firmly on the map, particularly at this time of the electoral cycle. Even more importantly, there have been changes in benefits, in social care and in the national health service, which have had an impact both nationally and locally. There has been increasing evidence from the research that this is not being addressed properly, so I think it would be of great benefit to a wide group of colleagues and to the House, and of course to the people who suffer from epilepsy.

Q22 John Hemming: As you have heard from the Committee so far, there are a lot of very good subjects. It obviously would make the Committee’s job a lot easier if it were possible to put any of those in Westminster Hall as general debates, because that would bring the debate earlier. If you were offered Westminster Hall, would you reject it?

Laura Sandys: No, we would take whatever you, as the Committee, felt was appropriate. One also has to be clear that we are talking about a lot of people in this country being impacted-

Q23 John Hemming: It is a very important issue, but there is a question of timing as well.

Laura Sandys: It is as much about people in the Gallery as it is about people in the Chamber, but we would be thrilled to have any debate that we can secure through this Committee.

Q24 John Hemming: Even in Westminster Hall on a Tuesday?

Chair: Those are 90-minute slots.

John Hemming: It is not going to be long enough, but it depends on what we have got to slot in.

Q25 Chair: One thing that we sometimes do-we will have to look at what we have got available, but if we are really backing up, what you can do is to have the debate in Westminster Hall and if it is really over-subscribed, come back to us and have another debate in the Chamber. That has happened frequently, for instance with the cycling debate, which was massively over-subscribed and we had to have another debate in the Chamber. You get two bites of the cherry. That may be an option to get it done more quickly, rather than waiting longer for the Chamber.

Laura Sandys: Yes. Obviously, it is really a reflection of this recent report. It is at a very important moment now, which is going through the planning process of the CCGs. If they are not clear about how important this is as part of their planning process, we will lose it. As Cheryl rightly says, there has been a huge amount of slippage. Through the reforms, conditions like epilepsy have been slipping through the cracks. I think it is important that we ensure that there is a strong voice there. I, and I am sure our colleagues, would be happy with something in Westminster Hall, but if it is 90 minutes, that is a very short period of time. As it is, one in every 100 people suffer from epilepsy, and we are still getting quite a lot of deaths through misdiagnosis. I think it is something that is important.

Chair: Thank you very much.

Q26 Oliver Colvile: First, I declare an interest, namely that I have a cousin who suffers from epilepsy, and I am acutely aware of the destruction that that can end up doing. The other thing is that I am the Government’s champion for pharmacy. To my mind, there needs to be better training for GPs and also pharmacists to make sure that they understand what part they can play. Would you see that as being part of the whole debate that takes place? Frankly, the commissioning boards do not seem to want to make as much use of pharmacy and other things, which I think is incredibly important.

Mrs Gillan: The Department produced two quality standards in epilepsy, one for children and one for adults, which were adopted, as far as I remember, by most of the major epilepsy charities and also by the neurologists and so on. I would see it encompassing that. I think it has been a long time since this has been explored. The quality standards are good, but training and awareness are obviously issues. You have only got to look at the sort of campaigns that are now being launched by the main epilepsy societies. I think that that is right, isn’t it?

Laura Sandys: Absolutely. I have great support for pharmacies as well, so I think that there is a role there. We are suffering currently from hundreds of millions of pounds of misdiagnosis. Some people are not being diagnosed and sometimes are ending up in places like A and E, with all the impact that that has. Some people are diagnosed with epilepsy who do not have epilepsy and are put on drugs that they should not be on. A lot of this is down to the provision, the understanding and the knowledge around epilepsy at the CCG level and across the health sector. Stigma is a very important thing, which Cheryl mentioned. When I say to people that I have got epilepsy, they expect me to fall to the floor almost as I say it.

Oliver Colvile: Please don’t do that.

Mrs Gillan: She won’t.

Laura Sandys: I will refrain.

Q27 Mr Evans: I cannot remember the last time that epilepsy was debated in Parliament, so it clearly is some time back. You have got 19 Members of Parliament supporting your application, which is very impressive. Do you have any indication of how many of those would want to take part in the debate?

Laura Sandys: We have a very active all-party group on epilepsy. I would say that at least two thirds of them-it depends when we hold it, because it will obviously be dependent on people’s diaries, but we have a very active caucus and they do get up and we make representations. I would have thought that they would relish the opportunity to make a contribution.

Mrs Gillan: Knowing from the Epilepsy Society that they have started a "lobby your MP" campaign across the whole country in the run-up to May 2015, I can assure you that if the Committee sees fit to grant us a debate, it will be something that every MP will be made aware of and a lot of people will want to contribute to.

Q28 Sir David Amess: Laura, will you just confirm that you are not standing again in the May election, and this may be the last time that you will be leading a bid to this Committee?

Hon. Members: Shame!

Laura Sandys: Yes, it will be, Sir David. I have already gone on bended knee to his great honour. To be frank, I feel quite strongly that I have not done enough, but I hope I have done something to raise the profile of people with epilepsy and to try to address some of the stigma. We have really got to have more people in this place-this place is very good at that-coming forward and talking about some of the issues that they personally face and ensuring that the public understand that we share some of the challenges, concerns and difficulties that they do out in the country.

Mrs Gillan: This is outwith my brief, but it would be a fitting tribute to Laura. She really has been an outstanding champion for epilepsy. I speak having looked after the Epilepsy Society and the NSE for 22 years. I think that she has done more than anybody in this House to bring it to people’s attention.

Chair: Thank you. What a nice note to end on. Thank you very much for coming.

Prepared 14th January 2015