Health: Innovative Medicine

Baroness Grey-Thompson Excerpts

Tuesday 1st April 2014 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, I thank the noble Baroness, Lady Thomas of Winchester, for tabling this debate. This is not a subject which I have previously spoken about in your Lordships’ Chamber, but a chance conversation in the corridor encouraged me to listen, and then to speak.

The subject of what medication should be given to patients with life-threatening conditions to ensure good-quality life is very interesting to me as, linking it to other work that I am doing on disability rights and quality of life, it has helped me to further examine the relationship between the public’s view of being sick or ill and being disabled. All too often the impression is given that if you are disabled, you must probably also be ill and therefore have a high cost attached to you. It is important to understand that the two are not synonymous.

I am interested in this subject because I have a number of friends who have been involved in various drugs trials and, while I do not require any medication, in my time as a wheelchair user I have certainly been offered experimental surgery to “fix” what were seen as my problems. This is of course not related to the issue of medication. However, one of the procedures that I was offered was a leg-lengthening operation when I was already paralysed; it would have made no difference to whether I could walk or not, or my ability to use callipers. Then years later, it was revealed on a television programme as an innovative procedure.

Concerning “life-threatening conditions”, I, like many others, would like to see further clarification on what that definition involves. I would also like to see what other options could be explored, such as developing physical literacy, physical health and healthy lifestyles. I know that this happens in many cases but I would like to be assured that this is the norm because, while medication is part of the answer, it is not the only answer. Many of my friends experience quite a lot of difficulties with urinary tract infections, but I have not had one of those since I was 13. I think that is because of my training and being active, and all the other things that are part of a healthy lifestyle.

I was interested to read the documentation provided in the Library, in which the Health Secretary, Jeremy Hunt, said:

“Making Britain the best place in the world for science, research and development is a central part of our long term economic plan”.

He added:

“Most people are only too happy to altruistically volunteer for medical research if it helps save lives”.

Encouraging investment in the UK is important in the light of some pharmaceutical companies choosing to reconsider where they are based and what research they are involved in. It is a useful aspiration to have, but we must of course be conscious of the balance between companies funding research for ultimate profit and giving people positive options.

In researching for this debate, I found many cases where hundreds of millions of pounds were spent on trials that may or may not be successful. My husband is a research chemist, so I have a little understanding of the cost of developing and testing new products, although in his case it is high-temperature chain oils. I also think that many of us who are not medics or involved in that profession often do not understand the cost of some of these medications. I was in the USA recently with my family when my daughter developed an ear infection. A trip to see a nurse practitioner was $100; it was another $100 to see a doctor and a very small bottle of branded medication was $400.

I will also briefly refer back to a Question asked by the noble Lord, Lord Clement-Jones, which is listed in Hansard as HL 991. The noble Earl responded by saying that:

“We are exploring ways in which patients can continue to benefit from innovative cancer drugs at a cost that represents value to the NHS, in the context of developing the new pricing arrangements for branded medicines”.—[Official Report, 25/6/13; col. WA 111.]

This cannot be simply about businesses investing in the UK. Somewhere, we have to balance the budget.

Within this, I also believe that doctors have tremendous power to influence patients. I have been hugely fortunate and have had some amazing doctors in my life. In fact, without the NHS I would not be here. However, it is important to have appropriate guidelines for explaining to patients which drugs they are being offered, and for them to know whether they are new drugs or medication that has been previously been developed but is now being suggested for new indications. In terms of research, it is absolutely imperative that we have the appropriate number of people using medication to report back the data so as to be able properly to monitor it. There is no doubt that this work is important for many people who have life-threatening conditions. I look forward to future debates in this area.