Health: Innovative Medicine

Baroness Masham of Ilton Excerpts

Tuesday 1st April 2014 Lords Chamber

[Baroness Masham of Ilton (CB)]

My Lords, I thank the Baroness, Lady Thomas of Winchester, for obtaining this debate and I congratulate her on all she does for people with muscular dystrophy. I also congratulate the All-Party Group on Muscular Dystrophy on its report on access to high-cost drugs for rare diseases. I know first-hand how desperate it can be when someone one knows and loves needs a drug that may not be registered but may help them in a deteriorating situation. To quote from the report:

“To ensure that patients with rare diseases are not denied vital and cost-effective treatments we need to see the NHS develop a new model with regulators and the industry”.

There are many people across the country who have rare conditions and need specialist treatment. There are many parliamentary groups dealing with particular diseases, illnesses and disabilities. The message I get from them all is that the delivery of services is patchy across the country. The message that I get from the Government is that services should be dealt with locally. However, the National Health Service should at least have national minimum standards and the guidelines set out by NICE should be adhered to.

I agree with the statement in the report that the Government should establish a ring-fenced fund for rare disease drugs to ensure that patients affected by rare diseases are not denied treatment. Is there not such a fund in Scotland? In England, the cancer drugs fund has been of great help to people with rare cancers. There was also a recommendation about ensuring that NHS England provides specialist centres equipped with an appropriate range of health professionals to deliver treatments. If patients do not get the correct diagnosis, treatment and advice, their condition nearly always gets worse and there is so much suffering and anguish.

I am always concerned when I hear it said that people with long-term conditions should be treated at home. They need the very best diagnosis and treatment, and to be taught how to manage their conditions by experts before going home. All interested parties should work in communication and co-operation to help the patients. Some of these conditions mean a shortened life, therefore patients should have the best quality possible for that life—and that means expert treatment and advice, and ongoing support when needed.

I stress how important specialist nurses are to these people who have rare conditions or complicated diseases. They are a vital support to consultants and patients, as well as teaching patients’ families and general nurses how best to look after those with special needs. They are the link between hospital and the community, so not to have them is false economy. I met a splendid group of specialist nurses last week, who told me that morale among nurses is not good. This is bad for patients. One of the reasons, they told me, was the shocking situation which happened at Mid Staffordshire NHS Foundation Trust and other tragic events. Yet another recent incident was highlighted over the weekend, but I can only praise the specialist nurses I have met, who are dedicated to helping their patients achieve the best possible life, often in very challenging situations. I hope that the Minister will agree that specialist nurses are essential.

There are so many rare conditions which need research that can give hope for the future. Approaches which undervalue new treatments can impede innovation, distort therapeutic decision-making and undermine global welfare. We need progress, not limitations.