National Health Service

Baroness Thomas of Winchester Excerpts

Thursday 8th January 2015 Lords Chamber

[Baroness Thomas of Winchester (LD)]

My Lords, belatedly all political parties are waking up to the fact that the future of the NHS is top of most people’s agendas in this country, which is why it is going to be prominent in all manifestos for the coming election. The country is also recognising that not only is the population getting older, needier and more disabled but disabled people like me are living longer than we probably would have done some time ago. Boys and young men with Duchenne muscular dystrophy only 15 years ago were dying in their teens, yet today, thanks largely to night-time ventilation, they are living into their 30s and 40s.

The lessons in the field of rare neuromuscular conditions—the field that I know best—are clear. Money spent wisely now by commissioners on access to specialist support and better care in the community for people with these conditions will save a significant sum later in unplanned emergency hospital admissions. That was the finding of a 2011 audit by Professor Michael Hanna of the National Hospital for Neurology and Neurosurgery in Queen Square, yet it appears that commissioners are not prepared to invest in this way to save in the future. I count myself lucky that I live in the capital, near a centre of excellence in this field, but there are significant gaps around the country in specialist care. The ideal is the development of managed clinical neuromuscular networks that bring together consultants, physiotherapists and family care advisers. An example is the one in the south-west, which co-ordinates service provision and the sharing of skills and expertise.

I now turn to research, which was a hugely important but largely unrecognised part of the Health and Social Care Act: the Act places a duty on the NHS, for the first time in statute, to promote research. A future NHS must do more to promote research and ensure that the UK has the clinical trials infrastructure to attract investment from pharmaceutical companies wishing to conduct trials. That was mentioned also by the noble Lord, Lord Turnberg. With the right support, the UK could become a world leader in this field—for example, through support for patient registries and databases for rare diseases. At present, the Muscular Dystrophy Campaign funds the NorthStar database and the national neuromuscular database, but this arrangement does not guarantee long-term security. Does my noble friend agree that if the NHS is to promote research, it should provide support to databases and registries for rare diseases?

I now turn briefly to funding for new treatments. The NHS will face an increasing challenge to deliver innovative but high-cost treatments with advances in genetic medicine. Will increased competition for funds mean that treatments for rare diseases lose out? To avoid that situation, will the Government introduce a ring-fenced fund for rare disease drugs, as has been done in Scotland?

That brings me to my last point, which is that the NHS must have a clear and transparent means of approving new treatments. I am sorry to say that the experience of the Duchenne treatment Translarna does not bode well, with one of the final stages of the process being held up. I know that my noble friend’s colleague, the Minister for Life Sciences, has been closely involved in helping to find a solution. Will my noble friend encourage his colleague to redouble his efforts to help steer through an interim solution that would allow patients access to this drug, which is available in Europe, by April of this year? It is effective only in boys who can still walk. There are many parents who watch in despair while the days pass, knowing that without a drug such as Translarna eventually their young sons will take their last steps.