Access to Medical Treatments (Innovation) Bill — House of Lords, 2016-02-26
Topic: Health
Susan Lilian Primrose Cunliffe-Lister (Crossbench, Unknown): My Lords, first, I congratulate the noble Lord, Lord Saatchi, on his indomitable determination to see something on the statute book concerning access to innovative medical treatments. I have been asked by the noble Baroness, Lady Gardner of Parkes, to say that she would have been here today supporting the Bill but has had to attend the funeral of a good friend, which clashes with today’s business. My interest in this subject goes back some years, when my brother was dying too early. One was willing on his behalf to try to find something to help him survive. An innovative treatment can give hope if everything else has failed At the age of six, a young cousin of mine developed neuroblastoma—an aggressive childhood cancer. His parents did everything they could, including taking him for treatment to the Children’s Hospital of Philadelphia. He was the most resilient, brave boy and he went back to school, but the cancer won in the end and Jamie died at the age of eight. His case illustrates the desperate need for new treatments. I feel that the Bill, which has been so well presented to your Lordships by the noble Lord, Lord Saatchi, may help to drive forward more innovative medical treatments The noble Lord knows that I am keen to speed up the process of getting new drugs to desperately ill patients when the usual ones do not work. I am keen on innovation as long as it is safe and in the best interest of the patient. Do the noble Lord, Lord Saatchi, and the Minister think that the Bill is safe enough? I do not want patients to have added discomfort when they are desperately ill, but on the other hand where there is life there is hope, and something new might just help The other day I read about a woman who had a cancerous tumour between her ribs and had been told by her doctor to go home and live her life until she died—there was nothing that could be done. She did research on the internet and found a place in America which used CyberKnife for this problem. The money was raised, she had the treatment and now, eight years later, she is well and free from cancer The Bill is about having a database to collect data about things that work and things that do not work. Information is vital if there is to be progress. I hope that the database will become available worldwide. It is important, for the sake of patients, that information is shared, so that our people can benefit from countries that are doing better than us. It is depressing that our cancer survival rates are not as high as they should be compared to other countries in Europe. Why, for instance, is Sweden so much better than the UK Some time ago I met a remarkable man called Les Halpin, already mentioned by the noble Lord, Lord Saatchi. He had motor neurone disease and he had a passion to find a better way of treating MND. There was, and still is, a desperate need for access to drugs which may be able to help. Les died. People like Les cannot wait. MND takes most people very quickly. Les Halpin’s spirit lives on, and on Tuesday "Empower: Data4Health" was launched to collect data with the patient at its heart. Its aim is to get drugs which can help. I hope that "Empower: Data4Health" and the Bill will work together I have some questions about Clause 2. Subsection (2) states: "The Secretary of State may by regulations make provision conferring functions on the Health and Social Care Information Centre ("the HSCIC") in connection with the establishment, maintenance and operation of a database containing information about … (a) innovative medical treatments carried out by doctors in England, and … (b) the results of such treatments". Does this mean that the NHS will pay for the database? Will the NHS run it? It would be very interesting to know how it will work, if that information is available today. It needs to be open and transparent, with the patient at the centre. Who will be able to access the database? Will patients be able to It is time for progress to be made, but communication must be efficient and patients must be safe. There are always risks in life, but there must be safeguards against those who put cash before care.