Thalidomide Victims

Cathy Jamieson Excerpts

Wednesday 5th September 2012 Westminster Hall

[Cathy Jamieson (Kilmarnock and Loudoun) (Lab/Co-op)]

I am delighted to have the opportunity to raise this important issue. It is good to see so many hon. Members in the Chamber, although if everyone wishes to intervene, I shall have no time to speak—[Interruption.]

[Hugh Bayley (in the Chair)]

Order. May I ask those leaving to do so quickly and to shut the door, because it is otherwise difficult for Members to debate this important issue?

[Cathy Jamieson]

Thank you, Mr Bayley. The issue is indeed important and a lot of people want to make interventions, so I will do what I can to accommodate them.

My interest was prompted by my constituent, Mr Paul Walkinshaw, who as a thalidomider was concerned about the future of the health grant. When I made further inquiries, I discovered that there were a number of concerns, in particular from members of the Thalidomide Trust, some of whom are present for the debate. I pay particular tribute to Mikey Argy of the Thalidomide Trust, and indeed to Liz Buckle, who lives in a wonderful part of Scotland. They made time to meet me and showed inspirational passion and commitment to the cause.

When I applied for this debate, little did I know that the whole issue of thalidomide would be back in the media and on the agenda because of the apology that was issued last weekend. We have seen Mikey, Liz and other thalidomiders in action over the weekend as they have commented on the apology.

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

I am sure that the hon. Lady agrees that an apology without any responsibility is no apology at all. In addition, may I say that I am hoping to carry on the work of the hon. Member for Gower (Martin Caton) by re-forming the all-party group? The group will meet next Wednesday, and I am sure that the hon. Lady would like to be a member.

[Cathy Jamieson]

The hon. Gentleman is absolutely right that the apology was fairly thin because it did not really accept responsibility or bring any additional resource with it. I will be delighted to take up the invitation to join the all-party group.

We all know the history. Between 1958 and 1962, thalidomide was given to thousands of pregnant women in the UK, supposedly as a simple solution to relieve morning sickness. In what has been called one of the darkest episodes in pharmaceutical research history, however, the drug caused thousands of babies to be born with a range of physical disabilities and medical conditions. It is worth remembering that the 472 thalidomiders alive in the UK today have been through a whole range of difficulties in their lives. They have been affected in a variety of ways, not only due to missing, short or deformed limbs, which is the common perception.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter before hon. Members. In Northern Ireland, there are 18 thalidomide victims, of whom eight are in my constituency and district, so the subject is close to my heart. One of the ladies, Sara Bunting from Newtownards, came to me this week to outline her case, which was to do with not only health but education. Does the hon. Lady feel that any pilot scheme for thalidomide victims must address not only the health issues alone, but education, because in many cases those people did not realise their potential? Such potential, if realised, could have been equal to or perhaps better than that of many in the Chamber.

[Cathy Jamieson]

The hon. Gentleman makes a valid point. This debate is focused on the health grant, but many people, with the right support and resources at an earlier stage and with people to champion their cause, could perhaps have done more to realise their potential. Ministers will want to take that on board to see what can be done in future in relation to the grant.

Many thalidomiders suffered damage to their eyes and ears, facial disfigurement and from damaged or missing internal organs, and a number have brain damage. Some 20% have hearing difficulties or deafness, and 1% are blind. The thalidomiders, who are now aged between 49 and 52, are beginning to show signs of early-onset wear and tear—the kind of symptoms normally expected of people in their 70s, 80s or 90s—and that has to be as a result of putting an unusual and sometimes extreme level of pressure and strain on their already disabled bodies.

[Mr Michael McCann (East Kilbride, Strathaven and Lesmahagow) (Lab)]

My interest is spurred by my constituent, Gerry Cleary, who is in the 49-to-52 age bracket. The point he made intensely to me was that the reason why the grant and the money available through the Thalidomide Trust are so important is that, as thalidomiders reach their later years, they find that the problems linked to their disabilities become more acute. That is why it is so important for the money to continue.

[Cathy Jamieson]

My hon. Friend hits the nail on the head. I will come on to that in a moment, because it is one of the main reasons why I felt it was important to secure this debate.

People are now coming up against new challenges in their lives after already facing many challenges over the years. Further action is needed. It is important to say that the challenges faced by those affected were such that when the health grant pilot was set up in 2010, it was welcomed as a way forward to address some of the problems.

[Fiona Bruce (Congleton) (Con)]

rose—

[Naomi Long (Belfast East) (Alliance)]

rose—

[Cathy Jamieson]

I want to have the time to say a bit more about that, but I shall give way briefly.

[Fiona Bruce]

I congratulate the hon. Lady on securing this important debate. Does she agree that it is particularly pertinent at a time when thalidomide victims have reached a certain age and the support from their parents, who have been so faithful over most of their lives, is now coming, or has come, to an end?

--- Later in debate ---

[Cathy Jamieson]

The hon. Lady makes an important point. Many elderly carers have of course given up part of their time. Indeed, they have used much of their resources, which is another reason why the grant is so important, because the costs for people dealing with the disabilities associated with thalidomide have not been fully covered, and many elderly parents are now struggling with them.

[Naomi Long]

One of the most prominent Northern Ireland campaigners on thalidomide issues is Kim Morton, who lives in my constituency. She has also served a term as mayor of Castlereagh borough council. When I have spoken to her about the importance of the health grant, she has stressed that while the cause of the disability is the same in all cases, the effect is not. The health grant gives people control over their own lives and the ability to make choices about the support and intervention that will make the difference in their individual circumstances. It is important that any package continues to give them such flexibility and control.

[Cathy Jamieson]

That is also an extremely important point. It is correct to say that while the cause was the same, everyone who has suffered as a result of thalidomide is a unique person who must deal with different situations. During my discussions with the people affected, I have become much more aware of the range of issues faced, which are not always accounted for in the design of our physical environment, as well as in the services that we provide. For example, while we are now better at considering wheelchair users, although we still have a long way to go, I am particularly struck by the additional need to take account of those with upper limb impairments, which we do not do in the environments that we provide for education or work. I was given examples of how heavy doors in buildings—these are things we take for granted—or inadequate toilets on transport create real no-go areas. That is not something that we can be pleased with in the 21st century.

[John Glen (Salisbury) (Con)]

My constituent, Steven Fletcher, also makes the point that, given the thrust of the Government’s policy on individualised assessments so that benefits generally meet the needs of individuals, it is only right that an individual assessment is done properly in this extreme example of need so that there is no gap between a flat-rate grant and the needs of those who are suffering and have special needs.

[Cathy Jamieson]

Those who are affected make the point that many of them use the health grant to supplement existing services in a way that meets their individual needs. They argue that that fits exactly with what the Government say they are trying to achieve through personalised care. That is one reason why thalidomiders are so worried about the future of the grant. For example, people have been able to use their health grant to fund complementary treatments to alleviate pain, physiotherapy and counselling, if they have mental health issues. The report “Securing our future health: taking a long-term view” highlights not only that the self-management of health has benefited individual thalidomiders, but that it has saved the NHS and other services considerable resources.

[Brandon Lewis (Great Yarmouth) (Con)]

I congratulate the hon. Lady on securing this hugely important debate. Does she agree that as the welcome pilot scheme is coming to an end, it is important for sufferers to have some certainty and confidence that something will follow? Will the Government give guarantees and assurances that there will be future financial security?

[Cathy Jamieson]

That highlights why I thought it was important to have this debate. It gives us the opportunity to raise issues on behalf of those affected by thalidomide and, at this crucial point, to get some indication about the future of the grant following the pilot. Thalidomiders argue that the most cost-effective answer is to give each of them the financial flexibility to develop their own solutions. They want the flexibility to combine all their different needs and to obtain one solution. They may need additional paid assistance if they have elderly carers or if their family circumstances change. They may need bespoke adaptations for their homes. We are used to homes being adapted for people with disabilities, but the cost of such adaptations for people affected by thalidomide might be way in excess of anything that that is done routinely for adapted housing. They may need better mobility solutions to enable them to travel and to use public transport, or they may need to make permanent lifestyle changes to help them to manage pain and other problems, and the health grant has been used for such things.

[Anas Sarwar (Glasgow Central) (Lab)]

I congratulate my hon. Friend on securing the debate. The number of Members in the Chamber shows the importance of the matter throughout the country.

The second evaluation report from the Firefly research consultancy states that steps taken now would limit further deterioration and/or prevent future problems, and that that would mean in the long term that we would have fewer demands on the NHS. Surely that shows that investment now would have a greater benefit for the NHS and local services in the long term?

[Cathy Jamieson]

My hon. Friend makes an important point that goes to the nub of the matter. The evaluation report shows that the pilot scheme had an important impact that was significant to the lives of individuals because it allowed them to retain or obtain more independence, and that it was cost-effective to the NHS and other social services.

Some people who are affected by thalidomide receive disability living allowance, which provides a proportion of the special costs, but there is worry that many will lose the mobility component of DLA when the system changes to personal independence payments. I suspect that we could spend another half an hour on that topic, but I wanted to put it on record.

[Steve Rotheram (Liverpool, Walton) (Lab)]

I am 50, having been born in 1961, and so is my cousin. My mum did not take thalidomide, but my cousin’s mum did. My cousin is a thalidomider, and she has lived a fantastic and active life. A friend of mine, Gary Skyner, whom many people here will know, is a Liverpool comedian, and has also lived an active and full life—he is a very funny lad. Both have relied on family support, but that will not always be there for them. I am sure that my hon. Friend agrees that all thalidomiders are asking for is a just settlement so that they can continue to live full and active lives.

[Cathy Jamieson]

The issue of justice is important, and it involves not just the health grant, although that is important, but compensation and other issues that are being pursued elsewhere.

[Jim Shannon]

Does the hon. Lady think that the Government should put pressure on the German Grünenthal Group? It said this week:

“we have been silent and we are very sorry for that.”

If its apology is forthcoming, surely it is time for it to deliver compensation. Perhaps the Government will support the thalidomide victims in their campaign for full compensation.

[Cathy Jamieson]

I am sure that any company would listen carefully to the comments and views that MPs are setting out on behalf of their constituents and take account of any message from the Government. I hope that Ministers will join us in calling for additional support and, further to the company’s apology, more compensation. The company must take responsibility for its actions.

[Glyn Davies (Montgomeryshire) (Con)]

I thank the hon. Lady for allowing me to be associated with this hugely important subject. Several hon. Members have talked about the costs faced by thalidomiders. When talking to a thalidomider I know, I was surprised by the cost of prosthetic limbs—they cost several thousand pounds. If thalidomiders do not have a spare, they can be stuck for weeks without a limb. I was staggered by that cost, and it should be taken into account in addition to those such as for adapting properties.

[Cathy Jamieson]

That extremely important point was made during my discussions with my constituent and others. We just have not thought of many of the practical things that people need for day-to-day living. Thalidomiders should have resources to spend so that they can make decisions, and that is why it is so important to continue the health grant.

[Andrew Selous (South West Bedfordshire) (Con)]

Will the hon. Lady give way?

[Cathy Jamieson]

I will give way for the last time, because I must conclude to give the Minister the opportunity to respond.

[Andrew Selous]

The hon. Lady mentioned the health grant. One of my constituents, a thalidomide survivor, wrote to me stressing the importance of his health grant, which allows him to spend less time at work and to have physiotherapy, which helps his condition. He is worried that he will not have such help in future, and that is a small example of how the health grant helps.

[Cathy Jamieson]

That is another clear example of why the health grant is so important in a range of ways. Many people have told me that they may want to change what they do to accommodate their needs, especially as they get older. We are learning from studies that thalidomiders are showing signs and symptoms of the ageing process earlier and may require different support.

In April, thalidomiders received their third and final payment from the health grant pilot, with no guarantee of any future provision from the Government, so they are unable to plan ahead and they are worried. One said that they were worried that they “will be abandoned again”. The danger is that the progress that this country started might be overturned, and that those who are affected will be back to square one.

In June, members of the national advisory council to the Thalidomide Trust met the Minister with responsibility for care services. I understand that he gave no commitment then—perhaps he was unable to—other than to express an intention to meet again after he had received Firefly’s second interim evaluation report of the scheme in July. That was disappointing for thalidomiders, because they thought that the first evaluation report had clearly outlined the benefits of the pilot health grant, which we have heard about from hon. Members on both sides of the Chamber. They wanted a commitment that something will be taken forward.

Thalidomiders’ health and their levels of disability will not improve. As we have heard, their health conditions will continue to deteriorate as they age, and the best that we can hope for on their behalf is to try to slow the rate of deterioration. The health grant is crucial for thalidomiders, and they cannot and should not have to continue without that lifeline. I hope that the Minister will indicate today that the Government see the matter as important, and that they will commit firmly to making a permanent contribution for as long as it is required.

As I have said, this is a unique group of people, and every thalidomider is a unique individual with individual needs. The campaign for justice, apologies and compensation will carry on, but the Government, and particularly the new Secretary of State for Health, have the opportunity to do what they can to ensure that the grant continues. I look forward to hearing the Minister’s response.

--- Later in debate ---

[Norman Lamb]

I am grateful for the right hon. Gentleman’s intervention. I absolutely understand the responsibilities of society and the Government on this issue, and I shall seek to take my responsibilities seriously.

I would like to pay tribute to the work of the Thalidomide Trust. It has considerable expertise and knowledge of the needs of those affected by thalidomide, and it does much to support the health challenges that people face and to address barriers to every day living. The trust’s contribution to supporting survivors and their families cannot be overstated.

I would also like to pay tribute to the national advisory council to the Thalidomide Trust. I met its members when I was in opposition and took up their concerns with the Government. They work tirelessly in the cause of thalidomiders, often despite their own impairments. We are all grateful for their work, which has done much to highlight to the House and the public ongoing and increasing health concerns. The hon. Lady referred to new issues that have arisen and we have to understand and respond to those. I look forward to seeing the final report of the NAC project, “Securing Our Future”, which the hon. Lady mentioned, and I would welcome the opportunity to meet the council to discuss that report. I should add that on the first day of my job, I am not in a position to provide all the answers, but I am happy to meet hon. Members who are concerned about this issue.

[Cathy Jamieson]

I should have welcomed the Minister to his new post. It was remiss of me not to do so, and I look forward to taking him up on that invitation.

[Norman Lamb]

That’s a deal. We will arrange that.

The current three-year grant was introduced by the previous Administration, but I welcome the opportunity to reiterate the Government’s support for the pilot, which explores innovative ways of enabling people to invest funding to prevent further deterioration in their health and to preserve their independence, which is critical. The funding helps individual thalidomiders to take control in meeting their complex and highly specialised needs, for they are the real experts. The value of such a grant is that it puts the power in the hands of individuals, so that they can make decisions about their priorities, rather than the Government seeking to determine that for them.

The Thalidomide Trust recently provided us with its evaluation report for year two of the three-year pilot scheme, and officials have read with interest how the money has been invested. It was evident from the interviews that were conducted as part of the evaluation that many people have a growing desire to self-manage their health in order to cope with existing health problems, limit further deterioration and/or prevent future problems. For some, the focus was on maintaining fitness or controlling their weight through gym membership, personal trainers, or swimming—the list is endless, but the fact that individuals are making those decisions is of considerable importance.

I am aware that the grant is due to end in March next year and that its recipients are naturally anxious about future funding. I have heard the concerns expressed today by many hon. Members, and I am grateful that so many have shown an interest, and attended and contributed to the debate. I have also heard the very strong case that thalidomiders have made for the health grant to continue.

[Cathy Jamieson]

I know that the Minister is summing up, but does he take on board the important point about planning ahead? If a decision comes too late in the day, before the end of the grant, it will make it difficult for people to consider how they can organise their lives in the year ahead. Will he at least commit to ensuring, as soon as possible, that a decision is made and an indication given about the way forward?

[Norman Lamb]

I am keen to make this a priority to try and reach a decision as quickly as we can. There are two issues: it is not only about providing certainty as soon as possible, but about how long the period of the grant would be. I recognise the argument in support of a longer period, in order to provide people with more certainty for the future. I need to look at all those matters, hear from the trust and officials, and read the reports that have come in before making my decision, but I want to make it quickly.