Terminal Illness (Access to Medicines)

Gregory Campbell Excerpts

Wednesday 23rd January 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for The Cotswolds (Geoffrey Clifton-Brown) on bringing the matter to the House. I want to focus on the end-of-life issues that he dealt with in the second part of his speech. Obviously those concern us all, but I want to concentrate on them because of several interactions that I have had with constituents on the subject, and because there is a need for drugs. I am confident that the Minister will respond positively and I look forward to her comments.

I have spoken recently about ending the so-called GP death list—a term that I use very carefully; some people see end-of-life issues in that way and are concerned. I was shocked when I read an article that stated that thousands of patients have already been put on those so-called registers,

“which single them out to be allowed to die in comfort rather than be given life-saving treatment in hospital”.

That is one thing that has emerged from discussions that have taken place. The article states that nearly 3,000 doctors have promised to draw up a list of patients they believe are likely to pass away within a year. It is claimed:

“As part of an unpublicised campaign endorsed by ministers, GPs have been encouraged to make lists—officially known as End of Life Care Registers”—

which the hon. Gentleman mentioned towards the end of his speech—

“of people they believe are going to die soon and should be helped to do so in comfort.”

That is the terminology that is used. In my opinion if a patient refuses further treatment this is their decision, not the doctor’s. Treatments must be made available throughout the NHS to those who want and need them—those who need care.

How many times have we heard of patients with no hope suddenly going into remission? An example concerning a child with cancer recently came to my attention. The doctor advised no more treatment, but the sister of the little boy was not ready to say goodbye, and for her sake the family asked for one more course of chemo to prolong the time left and prepare the other child for the expected death. The little boy responded to the chemo that was given in the hope of allowing a few more weeks of life; but that time has turned into six months. Who knows what the future holds? The point I am making is that there are probably many examples from across the United Kingdom where a wee bit of extra effort can be made and where it may not be necessary to prepare for the inevitability of death, if there is also a possibility of life through drug treatment. Imagine if that family had not been allowed to ask for, or the doctor had had the power simply to refuse, the last bout of chemotherapy. That is not an everyday occurrence, but it does happen and it should give us reason to pause and think before making drastic moves.

In 2008 the Labour Government announced a range of proposals aimed at improving the care available to patients with life-threatening conditions. They stated that a key part of the new proposals was a change to the way the National Institute for Health and Clinical Excellence decides which medicines are approved for diseases that affect only small numbers of people. The hon. Gentleman focused in his speech on some diseases that do not kill a great many people in the United Kingdom, and on which, therefore, drugs companies do not spend money; but perhaps they should. I want to discuss that issue. What has changed in the past five years? Is there a greater availability of drugs? I am not sure that that is the case, and would appreciate confirmation from the Minister of how many more medicines have been approved on the list. Many UK universities do great work investigating drugs and conducting research with pharmaceutical companies, and Queen’s university Belfast is one of them, at the forefront of the good work being done on new drugs for ailments including cancer, diabetes, and dementia and Alzheimer’s. Students come from all over the world to do research and to learn there. I commend the university, which has been able to source individual funding, and the many other UK universities doing similar work.

The campaign Empower: Access to Medicine, set up by a man suffering from motor neurone disease, recently caught my eye. The campaign calls for a review of the law and ethics on drug development, as it takes many years and billions of pounds to take a new drug to market from A to Z. The last drug licensed for motor neurone disease, which damages the nervous system, leaving muscles wasted and weak, was riluzole, which has been in use for 20 years. Can there have been no scientific advances since then? I do not believe that. Les Halpin has commented that

“to see primarily it’s the regulations that are slowing the whole process down, it just means we could be waiting an awful long time until a new drug is produced.”

I have a dear friend, whom I have known for many years, who has motor neurone disease. I have seen a healthy man go from being a fun person in the peak of health to someone wasting away in a chair. The drugs have given him a longer life, and perhaps a better quality of life latterly, but they cannot stop the onslaught of the disease. The finality of what will happen to him is clear.

[Mr Gregory Campbell (East Londonderry) (DUP)]

Does my hon. Friend agree that beyond the difficult and onerous issue of NICE approval of drugs that he and the hon. Member for The Cotswolds (Geoffrey Clifton-Brown) outlined, and which needs to be resolved, is the cost of drugs, post-approval? We need more work to be done on dragging down the cost, to make them more accessible.