It is always a pleasure to follow my hon. Friend the Member for Bury St Edmunds (Jo Churchill). Her knowledge and the way she goes about her business in the Chamber on this subject mean that it is always worthwhile to listen to her. What she says is powerful and she beats a trail that many will follow. She will get to the place she wants to get to eventually. I am very hopeful that this process today is one step along
the way. I hope she gets some comfort from the fact that she is beginning to open doors, open minds and, in this case, open up information to registered medical practitioners about a host of treatments that they might not have known existed.
First, I will deal with what I perceive to be a Government amendment, amendment 15, which was tabled by my hon. Friend the Minister. I will then deal with the amendments tabled by the hon. Member for Lewisham East (Heidi Alexander).
12.15 pm
We have talked about how the Bill might be able to help research, and there is a ton of innovation going on in the national health service at any given time. Sometimes spreading just a bit of extra knowledge and best practice can do the most amazing things. I guess the best example of innovative medical treatment that I have heard in all my stakeholder meetings was about a lady who, unfortunately, contracted mesothelioma, a sinister condition that can sit unnoticed for decades until it reveals itself. Its prevalence in our country is relatively high—in fact, we have the highest in the world—yet there has been very little research into finding a way to stop or even slow it. The story was given to me when I met the charity Mesothelioma UK, and it is about a lady I will call Emma —she has asked to be anonymised.
Emma was diagnosed five years ago with peritoneal mesothelioma, a cancer of the lining of the abdomen caused by exposure to asbestos. It is somewhat rarer than the version that attacks the lining of the lungs. She contracted it when she was married with two children and two grandchildren. Her first husband had been a building surveyor, and some of his work required him to be present at building demolitions. He remembers being present at one particular demolition when asbestos was found and removed. That was in the 1970s, when we were still being told that asbestos was safe and protective clothing was often not provided. Emma’s husband often returned home with dust all over his clothes, and it is thought that she ingested asbestos fibres during the washing of those clothes.
We now fast-forward to 2010, when Emma had just married her second husband and cancer was far from her mind. She was looking forward to a long and happy future. Her stomach had begun swelling, though, and she was putting on a bit of weight. After trying to diet, she decided to go and see her general practitioner. She was referred to a local hospital, and a few weeks later a scan revealed that she had peritoneal mesothelioma. She received five rounds of chemotherapy, with two drugs. I struggle to pronounce them, but if the House will forgive me, I will give it a go—they were pemetrexed and carboplatin. The side effects were extremely unpleasant, and she was given steroids to help take the edge off the worst of them. Unfortunately, the combination of drugs led to her contracting type 2 diabetes, but the cancer was held at bay for two years before it returned. Emma then received more chemotherapy with further rounds of those drugs, and once again the cancer was held at bay.
The disease returned in 2013, and once again funding was sought for pemetrexed. This time it was declined, on the basis that there was no evidence to support its
use. Emma was offered palliative care, but was not offered the drug again. She was given none of the drugs that had helped her fight off the disease twice before. Her family therefore carried out their own research, as everybody in such circumstances does, and found a team of surgeons at a particular hospital who could do an operation called cytoreductive surgery. At their request, her oncologist referred her to a team of surgeons, who found her to be a suitable candidate and agreed to carry out the operation. The surgery took four surgeons eight and a half hours, during which they removed her ovaries, peritoneum and gall bladder—a whole host of organs. The surgery is carried out regularly in the United States of America.
Emma spent two weeks in hospital recovering and then returned home. That was two years ago, and she has told the charity:
“Yes I still get tired easily and I have to be careful what I eat, but hey, I am still here leading a meaningful life. I feel I have experienced the best and the worst of the NHS. The best because of the great care and amazing surgery I have experienced but the worst because of the withdrawal of certain chemotherapy funding on the basis of lack of evidence.”
Very few people are diagnosed with peritoneal mesothelioma—about 200 annually in the UK—so it is really hard to obtain evidence that certain drugs, such as those that Emma used and was in the end denied, could work. In July last year, NHS England withdrew its funding for the operation due to its apparent lack of success.