NHS Blood Cancer Care

Part of the debate – in Westminster Hall at 3:16 pm on 17th January 2018.

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Photo of Philippa Whitford Philippa Whitford Shadow SNP Spokesperson (Health and Social Care) 3:16 pm, 17th January 2018

It is a pleasure to serve under your chairmanship, Mr Wilson. I, too, commend Henry Smith on securing this debate.

As has been said by Members, blood cancers often represent a hidden cancer, but that applies to solid cancers as well, particularly ovarian and pancreatic, which also tend to present with vague abdominal symptoms that simply could be nothing. The general practitioner sits there seeing cases of back pain and tiredness one after the other, and the challenge is to spot the patient among hundreds who might have something else. Obviously, if someone talks about bruising and night sweats, we hope that a GP would do a simple blood test that might flag up that one patient—that canary among the swallows —who needs to be referred to hospital and diagnosed. At medical school, we medics were taught to have a high index of suspicion, to not just go around assuming everything is nothing, but to try to hold those other things in our heads.

The hon. Member for Crawley mentioned that there are more than 130 types of blood cancers, but there are three main groups: leukaemia, lymphoma and myeloma. As a breast cancer surgeon, I dealt with lymphoma patients because they present with a lump. Lymph glands are all over the body and commonly swell up, so they would present with a lump in their neck or under their arm. A woman would commonly be sent to me with a suspicion of breast cancer.

Blood cancers are grouped together because of the type of cells they come from, but they behave in different ways. As was said, the challenge is how to get them diagnosed: how to have that index of suspicion. When someone moves to treatment, we use radiotherapy in some patients, particularly in lymphomas if the disease is localised or regionalised. The downside is that they might have radiotherapy over a large area of the body. Most of us are aware that radiation is damaging. I had patients in my breast cancer clinic that were under follow-up because they had had radiotherapy to their chest when they were teenagers and now had an additional risk of breast cancer. As we get more people to survive cancer, the challenge is the risk that they have of other diseases or ongoing side effects.

Dependence on chemotherapy and drug treatment has been mentioned. Of course, the biggest breakthrough was bone marrow transplants to deliver healthy stem cells. Radiotherapy is also used as part of that. The dependence on drug treatment and chemotherapy means blood cancers are even more vulnerable than other cancer types to the difficulties of accessing new and expensive drugs. A new drug, daratumumab, was just passed in Scotland in October. The decision will be made by NICE next month. It is the first immune treatment for one of the diseases in question, and obviously we hope that it will be the first of many that could start to bring about change, but inevitably such drugs, based on monoclonal antibodies, will be expensive, and that raises the issue of drug access.

In Scotland, there is the new medicines fund and in England there is the cancer drugs fund, a slight downside to which is that it is only for cancer. That might not be a problem for the patients that we are concerned about in this debate, but it is for people with some other diseases. However, the fund plays a role for drugs that have not yet reached the point of being passed by NICE, but for which some hope is felt. There was obviously great anxiety when seven key treatments were removed from the cancer drugs fund a few years ago.

Something else that happened a few years ago was that a limit started to be put on the holy grail treatment of bone marrow and stem cell transplant, in that patients with a recurrence were not given the opportunity for a second transplant between the summer of 2016 and the spring of 2017, because that was no longer being commissioned. Politicians and those high up in organisations such as NHS England need to be conscious that trying to balance the books may pull the rug from underneath people. The gap of three quarters of a year will have been catastrophic for some people who might have benefited. That must be recognised when decisions are made.

In the Scottish NHS, we do not have mechanisms such as 100-days commissioning, and hearing about it highlights to me how time, energy and people are wasted in trying to knit together a system that has become fragmented. I hope that the husband of Colleen Fletcher is doing well, and continues to do well; but for the cancer nurse specialists or doctors to have to try to plug a gap, or for patients to fall through the gap because, as was said in one briefing, there are CCGs and commissioning groups that do not even know they are responsible for commissioning that care after the 100 days, is a waste. I spent more than 30 years working as a breast cancer surgeon and I would not want to have to waste clinical time in trying to deal with the gaps between stools. I think that the friction between what NHS England commissions and what CCGs are responsible for must be looked at.

The hon. Member for Crawley highlighted, as did the charity briefings we received, the watch and wait approach taken with patients suffering from one of the more chronic types of blood cancer, such as chronic lymphocytic leukaemia and follicular lymphoma. I do not think that that should be seen as negative. We would not want to put people through tough chemotherapy if they were well; therefore we would not rush to do that. That is probably why many years ago those types were not labelled as cancer: what was referred to as “the C-word” was seen as a catastrophe. There was an attempt to give people the feeling that they were living with a disease; whereas we see cancer as meaning that the clock is running and we must rush to do everything. Therefore using the word “cancer” and then telling someone, “Actually we are not going to do anything about it,” is very challenging. That requires time for the clinician to have an open, honest and informed debate with the patient, so that they understand why they are not suddenly being put through chemotherapy.

Data and the auditing of performance are important for driving through the improvement of any service. I do not mean such things as waiting times, on which we all collect data, but actual clinical standards—how someone is treated and what we would expect. What would all the clinicians in the area think was good practice? I do not mean shutting things down, or units being threatened by the Care Quality Commission. Having developed the breast cancer standards in Scotland in 2000, I can say that sitting in a room with all the breast teams of Scotland and looking at the data in a big PowerPoint on the wall is a dynamic tool for getting people to change practice. No one goes to work wanting to be the worst team in their country, region or area. Having access to actual clinical data is a great driver of quality.

In England, work is being done on setting up cancer dashboards for the four commonest cancers. In Scotland, we have them for the 11 commonest cancers. We have had Scotland-wide breast cancer data since 2003. I have seen the quality go up simply from our all meeting every year, looking at the data and challenging each other and discussing the data—and sharing solutions. Whatever problem a unit faces—whatever the reason for their performance going down—someone else in the room will have had that problem before, and solved it. Such peer review and sharing of practice drives things forward. One of our big hopes for the cancer alliances is that they will redevelop what existed in cancer networks, which we still use in Scotland: people meet, support each other, and share practice.

The importance of research has been mentioned. As a great believer in the European Union and the things that we have gained from it, I am anxious about our leaving the European Medicines Agency, about the loss of its support mechanism on rare diseases, and about the possibility that we will be outside the clinical trials regulation system, which is designed vastly to reduce the paperwork involved in taking research forward in a clinical trial. In the end, what we want to come from research is new treatment—new drugs. The UK is dynamic in the life sciences and the development of new pharmaceuticals, but the rather bizarre thing is that often our doctors do not get to use them. For people working in hospitals, that is getting to be a negative feedback loop. We do not get paid extra if we put patients into trials. There is an enormous amount of paperwork, and people inevitably stay well after time to make sure that things function. If suddenly at the end of the trial period, when they might be getting the drug funded, they cannot get access to the drug for several years, until it gets through NICE in England or the Scottish Medicines Consortium, those people feel, “Who is gaining? It is not my patients.”

We require a different conversation with the pharmaceutical firms—some form of risk sharing by which perhaps a drug can be provided at a much lower price to the NHS. Instead of access simply ending and our going generic when the patent is finished, there could be a deal as to how many patients are treated with the drug before the NHS uses generic drugs. In that way the firms would know they would get a return on their money. The way things are at the moment, at the end of all the trials the price is worked out from how much time is left and how many patients are likely to be treated. If, as when Herceptin came in, it is a matter of thousands of pounds—Kadcyla was £90,000 per patient—it becomes almost impossible. While we tinker at the edges of the pharmaceutical price regulation scheme and what is done with the money we need a much deeper conversation.

Obviously we want to promote awareness of blood cancers. Public awareness of the blood rash was mentioned; but also doctors need to think about having a high index of suspicion, and doing a simple blood test. For legislators and those who oversee the NHS systems in which decisions are made, it must be important that when a patient goes to see the doctor they set off on a smooth pathway that does not involve negotiations, hassles and disruptions, and that we support them all the way through that journey.