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31 Mar 2009 : Column 220WH—continued
“My physical damage is manifested by the absence of arms and legs. In spite of the obvious difficulty caused by my impairments, I am proud to report that I have been in continual employment since I finished my education more than 20 years ago.
As a result of years of using my body in unorthodox ways to achieve everyday tasks, I am now experiencing increasing pain caused by osteo-arthritis and find it extremely difficult to continue my job, which necessitates me using a stick in my mouth to type on a computer keyboard for most of the working day. I have been advised by my GP that continuation of this activity is detrimental to my health and that I should consider terminating my job.”
Paul is not alone. The Thalidomide Trust recently carried out a study of 108 thalidomiders, which showed that, on average, each thalidomider has six or more complex and chronic health problems. They include ear, nose and throat problems; poor vision; palsy, kidney, heart and gastrointestinal problems; arthritis; osteoporosis; sciatica; epilepsy; and obesity.
Another study, recently published as a paper by Summerside, Johnson and Newman, showed that those people can be helped, but that there are considerable obstacles to their gaining access to that help. The authors described those obstacles as a hierarchy of information gaps and network failures.
The first gap is between the patient and information about their condition, the existence of those similarly affected, the trajectory of the condition, effective treatments, specialist help and the existence of centres of excellence. The next gap is in the knowledge of GPs and other primary-level carers, which means that patients are always referred to a specialist.
Usually, however, it is just that—a specialist in only one of their half dozen or more complex and chronic health problems. That identifies another gap, which is that between the second-level specialist and the pool of expertise and specialisms relevant to the individual thalidomider. Most significant, however, is the lack of an effective network between patients and other patients with similar problems, and the primary, secondary and tertiary care providers.
The Thalidomide Trust shows that networking is the key to improving the quality of life for thalidomiders as they face those new health problems—an approach that works equally well for those with other rare conditions. The trust initiated a pilot project to establish such a network service for its 108 referrals so far. That has proved successful for many, simply by homing in on the right expertise and sharing it. Indeed, the network does not stop at national borders.
The Thalidomide Trust was aware of Swedish and German centres of excellence for assessing people with such a range of problems and for identifying the best treatments for individuals. It made use of those institutions, which are now important nodes in the new network, and intends to create further centres in France, Poland and the UK, all of which will be part of that network. That approach will provide a coherent care pathway for thalidomiders, instead of sending them from pillar to post to be dealt with by high-quality experts functioning only in their specialism bunkers.
In this country, most of the expertise required to fit into those networks lies within the NHS. I hope that the Government will work with the Thalidomide Trust, and its partners in this country and abroad, to develop an improved network for delivering individual care and treatment to thalidomiders and others.
I have deliberately concentrated on the health issues faced by thalidomiders and the best approach for delivering quality health care, but I have not focused on the financial problems that they face as a result of these new conditions in purchasing, in particular, the expensive equipment to permit them to maintain satisfactory mobility. The all-party group on thalidomide, which I chair, is concerned about that point. I would be very grateful if my right hon. Friend the Minister agreed to meet its members, as well as thalidomiders, after Easter to discuss that very issue.
12.41 pm
The Minister of State, Department of Health (Dawn Primarolo): I congratulate my hon. Friend the Member for Gower (Mr. Caton) on securing the debate. All Members should recognise the important points that he made regarding the thalidomide tragedy and wider questions about disability. I am grateful that he concentrated on social care, which has wider ramifications, as he also made the valid point that as people with disabilities caused by thalidomide reach their 50s, they will face increased health problems and, in some cases, will need a much greater level of care and support. It is very important to understand that point.
I agree with my hon. Friend’s conclusion about the history of thalidomide. It is shocking nowadays to think that a drug so inadequately tested could have been prescribed to pregnant women purely on the manufacturer’s testament that it could
“be given with complete safety to pregnant women and nursing mothers without adverse effect on mother or child”.
We can all appreciate that such a situation could not arise today. The discovery of the links between thalidomide and birth defects led to a complete overhaul of the regulations on the testing of new drugs, encapsulated in the Medicines Act 1968.
My hon. Friend touched on a number of other issues, however, and asked for the Government’s response. On direct financial support, all Governments have, as he will know, adhered to the long-held policy not to make ex gratia payments to patients who have been, or are believed to have been, injured by a defective pharmaceutical product. That responsibility must rest with the company concerned. People with disabilities caused by thalidomide receive additional financial support, and a compensation package is in place through a private settlement agreed with Distillers—now Diageo. Furthermore, under a relatively recent agreement with Diageo, the company will continue to make annual payments to the trust. I understand that the most recent settlement will pay £150 million to the trust by 2037. Agreements were also concluded with previous Governments. I refer specifically to payments made in 1974 and 1978, and to a full and final settlement to the trust in 1996. A review of the tax relationships was also carried out to get them into the best possible position.
My hon. Friend mentioned a meeting with the trust, which has approached the Secretary of State, who has written back on two occasions, the most recent being yesterday.
Mr. Caton: That is not exactly right. The trust has not made the case for financial assistance, because it is a charity and so unable to engage in political lobbying. The trust’s advisory group, consisting of thalidomiders elected by all the thalidomiders in the country, was offered a meeting with officials, but the proposal to discuss financial assistance was precluded. My request to the Minister was for the all-party group, along with one or two thalidomiders, to meet her.
Dawn Primarolo:
My hon. Friend went on to raise specific important points about social care packages and access to services for the 457 individuals, but much wider issues, which the trust has raised with us, also need to be dealt with. The Secretary of State replied
yesterday in a letter to the chairman of its national advisory council. In it he mentioned a meeting with the Department as well as with the Treasury, because the trust has raised tax and other wider issues with us—even if my hon. Friend might not have done so today. The Secretary of State wrote:
“I find it disappointing that you feel that a meeting would sidetrack you from the focus of your campaign, this offer was made in good faith and I believe your actions are not in the best interests of the members you represent.”
I again offer that meeting to begin discussions on these very important issues. We need to hold the meeting if we are to engage in these important and complex discussions and to provide a way forward, particularly on access to services and social care. I ask my hon. Friend to use his good offices to ensure that those preparatory meetings take place, so that we can progress the discussions.
Mr. Caton: The all-party group is not an agent of the advisory council or anybody else. It is a group of MPs concerned about thalidomide, and we would be grateful for a meeting with the Minister to discuss various issues, including some that I have mentioned today.
Dawn Primarolo: I shall certainly not deny the all-party group a meeting. However, if it expects me to take those issues forward, I need to know exactly what they are. The Secretary of State and I have received representations directly from the trust, and the chairman of the national advisory council has put a number of issues on the table for consideration. There has been no word from the trust or anyone else to indicate that those are not the issues of concern.
My hon. Friend reiterated the issues today. The first relates to finance and the second to access to appropriate services. Government policy is designed to ensure that a person can live independently, with as much choice as possible in their care and greater opportunities to control their future. A number of policies deliver such goals, but as my hon. Friend rightly said, each individual has a number of specific and detailed personal issues, which need careful consideration. Such issues relate to access to social care and appropriate GP services and then referral to specialist services.
I confirm to my hon. Friend that I should be more than pleased to receive details from the all-party group on the points that it expects me to cover in the meeting. I should also be grateful for an indication of how such information varies from the letter-writing campaign, the early-day motion and the work and campaigning of the national advisory council. That would help me to address the points that my hon. Friend has raised. I should be more than happy to facilitate such a meeting. However, what I cannot do, as I am sure that my hon.
Friend appreciates, is discuss policies that might not necessarily be a matter for the Department of Health. They might, for example, be a matter for Diageo, or even the Treasury if the matter relates to tax.
On that basis, I hope that my hon. Friend feels that we have a way forward. I want to do all that I can to facilitate a meeting with the all-party group, but to assist me in ensuring that the meeting has the focus that everyone wants, I should be grateful if my hon. Friend provided me with the necessary detail. I am confident that all of us will ensure that we do the right thing with regard to the rights of these individuals. I thank my hon. Friend again for the opportunity of answering this Adjournment debate, and I look forward to receiving the points on which he wants us to reflect and then to facilitating the meeting with the all-party group.
Mr. Caton: Has the Minister looked at the networking approach that the Thalidomide Trust and others have engaged in for dealing with the complex combination of problems? Referring a patient to one specialist and then to another does not deliver for them, as a more holistic approach would do.
Dawn Primarolo: I am aware of that, as are my officials. It was precisely because we wanted to focus on that area that we decided that the initial meeting should be with Department officials. We wanted to concentrate on that proposal and whether there was more that could be done. I refer to the point made about service delivery. Perhaps the trust interpreted our request of, “Will you please meet with officials of the Department of Health initially to discuss this?” as a brush-off or a way of parking the issue rather than meeting the Minister. The opposite was the case. The initial request was to ensure that the matters raised by my hon. Friend were thoroughly considered so that we could see whether recommendations could be made to Ministers to take the matter forward. I accept that my hon. Friend is raising in this debate issues about how we can better improve and deliver services on a personalised and individualised basis, because that is necessary for all such groups—although urgently for thalidomide sufferers. I am trying to find a path to do that without a lot meetings that end with me saying, “I am going to go away now and ask my officials to look at it and give me more detail before we take it forward.” I hope that my hon. Friend will accept my suggestion on that basis. Perhaps we could do both: the trust could meet the officials, and I will meet the all-party group—as I am happy to do—to see how we can take the matter forward.
I hope that my hon. Friend is now reassured. I look forward to meeting him in the not too distant future.
12.56 pm
Child Seat Bases (VAT)
1 pm
Bob Russell (Colchester) (LD): I have been a Member of Parliament for nearly 12 years, and this is the first time that a Minister has not been in his or her place at the start of a debate in which I have been involved. I find that regrettable, to put it mildly, particularly because today is my birthday.
Nothing would give me greater pleasure if, as a result of the debate, there is one less child fatality on our roads. I am grateful to the Baby Products Association, which provided an extensive briefing on this important subject, not only on the child safety aspect, but on the nonsense of the variables in the VAT system, whereby the base on which a car seat is fixed is levied at 15 per cent., but the car seat that sits on it is levied at 5 per cent. Clearly, the base and the seat are one and the same, because neither is any use without the other. The Government should address that and bring the levy to a universal 5 per cent.
I declare that I am chairman of the all-party road safety group, which is backed by Brake, the road safety charity. I am also chairman of the associate parliamentary justice for road traffic victims group, which is supported by another charity, RoadPeace. I make no apology for additionally declaring an interest as the grandfather of Joseph, Owen and Jessica, who are seven, four and six months respectively. I am anxious that they and all other children who travel in cars are as safe as possible.
Every year, 30 children up to the age of 16 are killed while travelling in cars, more often than not when sitting in a car seat alongside parents who thought they were safe. Each year, more than 16,000 children are injured, 300 seriously. At 30 mph, an unrestrained child can be thrown forward with a force of 30 to 60 times their body weight. They would be thrown around inside the vehicle, injuring or possibly killing themselves and anyone else who was in their trajectory. They are also likely to exit the car through one of the windows.
Those deaths and injuries can be prevented. We all know that the safest way for children to travel in cars is in a car seat suitable for their age, height and weight. A properly fitted child restraint keeps the child static in their seat. It prevents them from being thrown about, which reduces the likelihood that they will be injured or killed in a crash. Not only does that make perfect sense; it is the law of the land.
I am grateful to the Royal Automobile Club Foundation for its briefing. Its research has shown that as many as one in 10 children who should be restrained in appropriate car seats are not. With so many children being put at risk, it is not surprising that such a large number end up killed or injured.
In these difficult economic times, some parents and carers could be putting babies and small children in danger because they are simply unable to afford the best available child seats and other in-car safety equipment. Any deterrent, including prohibitive VAT rates, to the purchase of child car seats needs to be eliminated. The RAC Foundation’s Philip Gomm stated:
“The Government might be in desperate need of revenue but raising it at the expense of road safety in general, and the safety of the nation’s children in particular, is a false economy, and sends
out the wrong message to all responsible motorists...The RAC Foundation would urge the Chancellor to reconsider his policy on VAT on these sorts of child car seats and so support the objectives of the DfT’s Think! Campaign which is aimed at reducing child casualty rates.”
Since 2006, children must be placed in the correct restraint for their age until they reach the age of 12 or the height of 135 cm, which in old money is about 4 ft 6 in. However, neither cars nor car seats are universal. Standard restraints with no base, placed directly on the vehicle seat and employing the existing adult belt system, can be fitted with the wrong tension and with the belt fed through the wrong pathways. Indeed, the car seat may be wrong for the car. Research has shown that only 25 per cent. of belt-fitted child car seats are fitted correctly at any given time. I am advised that data published by Halfords go as far as predicting that four in every five seats is fitted incorrectly. There is a danger that parents are being lulled into a false sense of security, and are unaware that despite their best efforts their children are still at risk every time they do the school run, visit grandparents or take a day trip to the seaside.
There is also a danger that improvements in child safety technology are outpacing road safety laws. I am now becoming something of an expert on car seats and their fixings. Since 2007, International Standards Organisation FIX points are fitted as standard on all new models of European car. ISOFIX points are the international standard for attachment points for child safety seats. They allow base systems to be plugged directly into the chassis of the vehicle. ISOFIX bases for child car seats are simple and effective. They are fitted correctly 96 per cent. of the time, which is a margin of error of only 4 per cent. That might be 4 per cent. too much, but 96 per cent. of the time, things are okay. We should, however, compare that to the statistics for older models.
Additions to the family can be fantastically expensive—there are so many things to buy—but one piece of equipment on which we must never compromise is the restraint system for the car. There may be a temptation to buy second-hand products from eBay and the like, but parents simply must not do that if they value their child’s safety.
The Baby Products Association has warned that the trend to use sites such as eBay, and car boot sales, smalls ads in newspapers and shop window postcards, means that parents are unwittingly risking their children’s safety by purchasing second-hand equipment without knowing whether it has been involved in an accident or whether it complies with UK safety standards. On just one day recently, 1,420 used child restraint products were up for auction on eBay, including 434 forward-facing car seats, 736 rear-facing seats and 104 booster cushions.
The BPA has launched a national campaign entitled, “Think Before You Sell”, aimed at nursery retailers, doctors’ surgeries, antenatal departments, social services, playgroups, carers and the general public. The campaign, which is supported by the Royal Society for the Prevention of Accidents, calls on online sites to refuse to let sellers auction baby equipment unless they can provide a record of purchase, proof that the item has not been involved in an accident, full fitting instructions and guarantees that the seat meets the United Nations standard regulation 44.03 or 44.04.
Peter White, chief executive of the BPA said last month:
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