NHS Blood Cancer Care

Henry Smith Excerpts

Wednesday 17th January 2018 Westminster Hall

[Henry Smith (Crawley) (Con)]

I beg to move,

That this House has considered blood cancer care in the NHS.

Mr Wilson, it is a pleasure to serve under your chairmanship.

Like many people in this room today, I have lost a family member to blood cancer. Five and a half years ago, my mother died from acute myeloid leukaemia, also known as AML, an extremely short time after diagnosis. I have been touched by the many stories of families in Crawley and nationwide who have contacted me to share their own experiences of losing a family member to blood cancer. With conditions such as AML, there is an incredibly short time—sometimes just a matter of days—between being diagnosed and this form of blood cancer taking a life.

It was with those stories in mind that in 2016 I was pleased to set up the all-party parliamentary group on blood cancer. I place on the record my thanks to all colleagues, including those who left Parliament last year, for their work in getting the group up and running and in starting our inaugural inquiry on NHS blood cancer care. While the inquiry, held last year, and the report, to be launched in the Palace of Westminster right after the debate, focus on the implementation of the cancer strategy for England, we are keen to learn from examples of good practice in Scotland, Wales and Northern Ireland and have made approaches to the devolved Administrations accordingly.

[Nick Thomas-Symonds (Torfaen) (Lab)]

I would like to talk about a Welsh example: my young constituent Emily Clark, who was diagnosed at 16 and subsequently sadly passed away. During the period of her illness, her work in setting up the RemissionPossible initiative resulted in 4,000 more people joining the stem cell donor register. Will the hon. Gentleman praise Emily, and her mother Donna Dunn, who is continuing the work?

[Henry Smith]

My condolences to Emily’s family. There are all too many examples of young people passing away from blood cancer. I pay tribute to Emily’s mother for a fine legacy. It is sad that a young life has been lost to this condition, but wonderful that so much good work has been done as a result. I would be grateful if the hon. Gentleman passed on my best wishes to them.

[John Howell (Henley) (Con)]

I congratulate my hon. Friend on the excellent work he is doing in this sphere. Blood cancer is a bit of a hidden cancer. If someone has a solid tumour, it can be seen and treated and they can see what is happening with it, but blood cancer is difficult to detect. What is he doing to encourage early detection?

[Henry Smith]

My hon. Friend anticipates some of my remarks in a few moments’ time, but he is absolutely right to use the words “hidden cancer”. Blood cancer is very different from solid tumour cancers—that is a key point and problem.

I was going to say that, from four o’clock, right hon. and hon. Members are very welcome to come along to Strangers’ Dining Room for the launch of our report.

[Mark Tami (Alyn and Deeside) (Lab)]

I join others in praising the hon. Gentleman for securing this debate and for the report, which will be published later. I apologise for having to leave, but I am chairing the all-party stem cell group at three o’clock, so everything is coming together at the same time.

Does the hon. Gentleman agree that in this area, as in stem cell research, great progress has been made over recent years, and we do not want to lose that progress? Financial budgets are tight, and we realise that the health service faces many challenges, but we need to keep the research going. There has been great progress in this area and we must not lose it.

[Henry Smith]

The hon. Gentleman has a fine excuse for leaving the debate early, and I endorse everything he says. Future stem cell research is critical; this country has made a good start, but we cannot be complacent in any way, shape or form.

The APPG’s work focuses on blood cancer—as my hon. Friend the Member for Henley (John Howell) said, it is a hidden cancer—on the differences between blood cancer and solid tumour cancers such as breast cancer and prostate cancer, and on the ways in which patient outcomes can be improved with Government, medical professionals and local healthcare bodies working in partnership.

It is not an exaggeration to say that blood cancer is one of the great public health challenges of our time. We know it is the third biggest cancer killer in the UK, the fifth most common cancer overall, and by far the most common cancer among people under the age of 30, as we heard from an intervention earlier.

[Mike Hill (Hartlepool) (Lab)]

I congratulate the hon. Gentleman on securing the debate. On the point of cure, will he celebrate with me the fact that one of my young constituents, Elly-Mae Waugh, aged 12, was confirmed cancer-free in November 2017, having been treated for two years for lymphoblastic leukaemia? Does he agree that there is hope and that there is a need to better finance research into blood cancer developments?

[Henry Smith]

I am delighted by the news that the hon. Gentleman’s young constituent is cancer-free; that is wonderful to hear. There are positive stories that we can draw on. Antonio, the son of our former colleague Sir Nick Clegg, the former Deputy Prime Minister, was fortunately given the all-clear from the blood cancer he was being treated for. I thank the hon. Gentleman for highlighting those positives.

A key factor in ensuring early diagnosis is a greater knowledge and understanding of the symptoms of blood cancer. Diagnosing one of the 137 different types of blood cancer can be complex because symptoms such as back pain or tiredness can, of course, easily be misunderstood or misdiagnosed. Other symptoms of blood cancer include night sweats, weight loss and bruising, and in the first instance can often appear similar to feeling “run down” or having the flu, as was the case with my mother. We thought she had flu for a couple of weeks beforehand, and then she sadly passed away in a very short time.

[Julia Lopez (Hornchurch and Upminster) (Con)]

I thank my hon. Friend for securing an extremely important debate. He talks about the trouble of diagnosing hidden cancers such as leukaemia in adults, but it is sometimes particularly difficult to diagnose cancers in children. Before Christmas I had a sad meeting with a constituent of mine whose daughter Isla Caton has neuroblastoma, a particularly vicious form of childhood cancer. He discussed how it took three months to diagnose her, because she was only showing lethargy and people had come up with various different diagnostic ideas. In Japan, they test children from birth—

[Julia Lopez]

I am sorry, excuse me. Does my hon. Friend encourage tests from birth to diagnose these sorts of cancers?

[Henry Smith]

My hon. Friend raises a very valid point. I mentioned best practice for NHS England and talking with the devolved Administrations, but we also have to go internationally for that best practice. She commented on the difficulty of diagnosis and people having to go to the GP many times before diagnosis, which sadly is a common story.

[Royston Smith (Southampton, Itchen) (Con)]

On the point about people and diagnosis that my hon. Friend just mentioned, is there some weakness within the system that means that GPs are not diagnosing early enough? If so, what does he think should be done about it?

[Henry Smith]

I am grateful to my hon. Friend for his intervention. Yes, that is the problem. One of the issues is just that: the symptoms are all too often commonplace. Particularly at this time of year, many of us are suffering from colds, are feeling tired or have other viruses. I will come on to this later on, but there is a message to GPs that, if one or more of these symptoms is being displayed, they should consider that it could be blood cancer and carry out a relatively simple blood test to try to determine that. Far too often, blood cancer patients have to visit their GPs many times before being referred to hospital.

[Mark Tami]

My elder son developed a platelet rash, which is a common sign of the disease getting to a certain stage. There is a lot of public awareness about meningitis and what to look for, but that rash does not seem to feature in people’s minds, in terms of blood cancer. Does he agree that we probably need to do more to educate not only doctors but the general public on what to actually look for because, obviously, the earlier the diagnosis can be made, the better?

[Henry Smith]

The hon. Gentleman is entirely correct. I am sorry to hear of his family’s experience. The symptoms can often be confused with others, which is why it is important, as was said in an earlier intervention, to stress that GPs should be given the support and the backing to raise awareness of the symptoms. A simple blood test should be offered to assist with early diagnosis for people displaying one or more of these signs, and GP education and training needs to be improved to increase knowledge of blood cancer symptoms.

As was said in an earlier intervention from my hon. Friend the Member for Henley, unlike solid cancer tumours, blood cancer cannot be surgically cut out, and the experience of blood cancer patients is therefore very different from that of those with other forms of cancer. Blood cancer patients are not currently receiving the treatment and support they deserve, which is one of the key points that I hope the Minister will take from the debate.

[Nick Thomas-Symonds]

Does the hon. Gentleman agree that one of the keys to treatment is having as many people as we can on the stem cell donor register? There are 660,000 selfless individuals on it at the moment. We should thank them and also encourage those between the ages of 16 and 30 to sign up.

[Henry Smith]

The hon. Gentleman is again absolutely correct. The stem cell register is vital to our addressing this condition going forward and beating blood cancer in the future. We would all do well to echo his message.

[Mr Philip Hollobone (Kettering) (Con)]

I congratulate my hon. Friend on the tremendous work he is doing with the APPG and also on his superb speech, which I am following closely. One of my constituents, Mr Gaziano, has written to me to say that he suffers from an incurable form of blood cancer called chronic lymphocytic leukaemia, which is apparently the most common form of leukaemia among adults. He makes the same point about the lack of support. Apparently, 66% of people with that type of leukaemia live with anxiety, 50% with stress and 34% with depression, but they are not getting the psychological support from their healthcare teams that they need.

[Henry Smith]

My hon. Friend is absolutely right. I am sorry to hear of his constituent’s experience. He anticipates remarks I will make later, with regard to psychological support for people with chronic, longer-term conditions and the watch and wait approach, as it is sometimes called, for dealing with some forms of blood cancer, particularly in adults.

The Government and NHS England need to address, as a matter of urgency, the specific needs of blood cancer patients and take immediate steps to improve their care. Something that may seem as simple as the terminology surrounding blood cancer can have an effect on ensuring support for patients. As I said, there are 137 different types of blood cancer—we have heard a number of different examples already—including various strands of leukaemia, lymphoma and myeloma. In each of those, one common word is missing: cancer. The lack of that important word when telling somebody they have one of those forms of blood cancer runs the risk of their not fully comprehending the gravity of their condition. The APPG’s report found that clinicians and patients said that the increasing use of the overarching term “blood cancer” has helped patients who have been diagnosed recently to gain a greater understanding, not only of how the disease is part of a wider clinical area but that there is an entire community of health professionals, charities, and patient groups to help them.

I am grateful to all those who took the time to respond to our web consultation and answer the questions, including those on early diagnosis. After analysing the responses, the APPG’s report outlines three main audience groups where increased awareness could benefit patient outcomes. The first is the general public. While greater awareness of the symptoms would lead to people seeking medical intervention sooner, I also appreciate the words of caution from some in the medical profession, who reiterate that this must be handled carefully to avoid undue concern, particularly given the commonality of the symptoms. There is agreement that blood cancer awareness is far behind that of other common cancers, as we have heard.

The second group is GPs. Recognising and diagnosing blood cancer symptoms can be difficult, and many patients reported frustration at having to see their GP a number of times before their blood cancer was diagnosed, as we have heard. The third—as I turn to the Minister—is cancer policy makers. We heard that blood cancer was not always at the forefront of their minds. As such, we seek the extension of policies and initiatives designed to ensure broad benefit to patients with solid cancer tumours to those with blood cancer.

Much of the work on blood cancer awareness is undertaken by the charity sector. To that end, I pay tribute to the Spot Leukaemia campaign organised by Leukaemia CARE, which I am pleased to say was supported by my local community through Crawley Town football club, which made the cause its charity of the day at a game just last September. I ask the Minister for his assurance that the Department of Health and Social Care will engage with such campaigns, to ensure that the full power of his Department and the NHS can be used not only to work in partnership with such charities but to give greater consideration to non-solid tumour cancers when developing policy.

If blood cancers are taken into greater account, it will lead to improvements in the patient experience. As we heard in an earlier intervention, the patient experience of those with blood cancer differs from those with other cancers. The sad reality is that some patients with some chronic blood cancers will never be cured. They will instead require treatment for the rest of their lives, with the cancer managed as a long-term condition. Patients who have had access to a clinical nurse specialist have been clear on the role that a CNS has in the patient experience. Indeed, respondents to the APPG’s report were clear that access to a named CNS was the single most important factor that improved their experience.

Again, the charity sector is working to support patients in this area. By April, the Anthony Nolan charity will have funded nine CNS posts in stem cell transplant centres across the UK. These specialists provide support for patients, including assistance in getting back to work or school, as well as dealing with the physical and emotional aspects of a stem cell transplant—a potentially curative treatment for blood cancer, as we heard in an intervention, for which I am grateful.

Some patients will be put on a watch and wait programme, as I mentioned earlier. That literally means that a patient’s blood cancer is monitored, and it can sometimes take years for it to reach a point where treatment can start. The very nature of such a scenario will place unbelievable pressures and strain not only on the patient fighting that cancer, but on their family, friends and wider support network.

Tailored psychological support, which I am grateful to my hon. Friend the Member for Kettering (Mr Hollobone) for mentioning, needs to be made available for patients—particularly those on a watch and wait regime.

[Julia Lopez]

My hon. Friend talks about the wider strain beyond the physical. Does he agree that a huge financial strain is often placed on families? The family in the case I raised earlier had to spend a lot of money on takeaway food, the congestion charge, parking and hotels just so their daughter could receive what can be very intensive treatment.

[Henry Smith]

My hon. Friend is absolutely right to raise the spectre of the financial burden, as well as the psychological pressure that patients and their loved ones face when undergoing treatment. There can often be expensive visits into London or other major city centres to undergo treatment.

I pay tribute to organisations such as Macmillan, which is very worthy of our support and does amazing work for those with not only blood cancers but all chronic and terminal conditions. I ask the Minister for his assurance that, as recommended by the cancer strategy, all blood cancer patients have access to a clinical nurse specialist or equivalent model of support.

One of the points raised in the two oral evidence sessions held by the APPG last September was the work of charities to provide support for patients and their networks. As my hon. Friend the Member for Hornchurch and Upminster (Julia Lopez) said, a lot more support needs to be given to patients and their families on issues not related to treatment, such as financial advice, so that they can devote their time and energy to getting better.

I have mentioned a number of organisations, but I reiterate the fine work of Macmillan, which offers help to cancer patients and their families up and down the country. In my constituency of Crawley this week, one of the charity’s information hubs will be open in the County Mall shopping centre until Saturday. Its staff are on hand, as they are all the time, to answer questions about symptoms, side effects or any other issue relating to support locally.

We can be thankful that an increasing number of blood cancer patients are living for many years after their diagnosis, and I thank hon. Members for giving examples from their constituencies. The cancer strategy says that all cancer patients will have had access to the recovery package by 2020. That helps patients after their treatment has finished, so that they can return to their normal lives as much as is possible. Of course, there must be recognition that patients can go from having regular access to a healthcare professional while receiving treatment to feeling like they have no support at all after treatment ends. It has been described as like falling off the end of a conveyor belt, with no one to talk to about after-effects, dietary needs and the everyday activities they had enjoyed before treatment started.

I come back to the issue of how blood cancer is different from solid tumour cancers. I hope the Minister and his colleagues at the Department of Health and Social Care will work with NHS England to consider how all patients can benefit from aftercare support, including ensuring that the recovery package takes into account the differences. It is difficult to go from, in some cases, constant access to a CNS during treatment, including communication being available by mobile phone, emails and texts, to support coming to an end when a patient is sent home. There are long-term effects of blood cancer that need to be taken into account.

In particular, for patients treated with a stem cell transplant, the transplant itself is only the beginning of a long journey to rebuild their lives. By 2020, it is thought that there will be more than 16,000 people living post-transplant, and a significant proportion of those people will experience long-term side effects of their treatment. They will require specialist support, and it is incumbent on us to ensure that people across England receive it with greater consistency.

I move on to the issue of new treatment access and research on the differences between blood cancers and solid tumour cancers. It is important to remember that blood cancers are often not treatable using surgery or radiotherapy. Blood cancer is therefore more dependent on the development of and access to new drugs in order to continue enhancing patient outcomes.

The process of how the National Institute for Health and Care Excellence and the drug manufacturers negotiate can affect patients. Where NICE has offered negative draft guidance on a particular cancer drug that, after further negotiations between NICE and the manufacturer, changes to final positive guidance, the period when patients are left to think that potentially life-changing or life-saving treatment may not be available can cause huge anxiety. Our report calls for final negotiations to be undertaken before negative draft guidance is published.

I have mentioned the work of the charity sector in supporting blood cancer patients. That is perhaps most significantly represented by the financial investment made by blood cancer charities to fund research, develop a good research base and ultimately produce relatively good survival rates. I ask the Minister to ensure that further support is given to that research, to not only provide financial backing but ensure that blood cancer patients are at the heart of cancer policy.

I am conscious of allowing other colleagues the opportunity to make substantive remarks, but on the subject of NHS commissioning, local decision makers should look for opportunities to bring care for chronic blood cancers closer to the patient where appropriate. I will be writing to my local clinical commissioning group in Crawley to share a copy of the APPG’s report, and I encourage colleagues to do likewise with their respective CCGs.

I am sure that all of us here today can name people in our local areas, as many hon. Members have, who have experience of dealing with blood cancer in their family and working to raise funds for those who want to make life easier for patients and their support networks. In my constituency of Crawley, I am grateful for the work of the Mark Henry Archer tribute fund at Bloodwise, which was set up by my constituent Jayne Archer in memory of her late husband, Mark, who sadly lost his battle with lymphoma in 2010.

I mentioned at the start of my speech that blood cancer is the most common cancer among people under the age of 30. Someone can be in the peak of physical fitness and it can still strike. Just a week into this new year, Juan Carlos Garcia lost a three-year battle with leukaemia. He was just 29 years old and a professional footballer who had played in England for Wigan Athletic and at the 2014 World cup for Honduras. Blood cancer quite simply can strike anyone at any time.

I would like to thank the patient advocate and medical professionals who took the time to come to Parliament and answer the APPG’s questions at our evidence sessions last September. I also express my sincere gratitude to Bloodwise for providing secretariat support to our APPG, assisting blood cancer patients up and down the country, and playing a leading role in the research that is necessary to improve outcomes and the patient experience.

I know that many people in this room will be aware of one family that has been affected by blood cancer in the last couple of months. The Sky Sports presenter Simon Thomas and his eight-year-old son Ethan lost their wife and mother Gemma, aged just 40, last November. Just three days after being diagnosed with acute myeloid leukaemia—the same form of blood cancer as my own mother—Gemma passed away. Incidentally, my mother’s diagnosis came just hours before her death. Our thoughts are with Simon, Ethan and their family and friends, and every patient affected by this disease.

It falls to each of us here to make sure we redouble our efforts to bring as much help, comfort and support to blood cancer patients as possible, and I ask the Minister for his continued diligence in such matters. I have seen at first hand how quickly those who have blood cancer can be taken from us. In a previous debate that I was fortunate to secure in Westminster Hall on 7 July 2016, I said:

“I look forward to ensuring that the issue of blood cancers is further advanced and that awareness is increased.”—[Official Report, 7 July 2016; Vol. 612, c. 395WH.]

With the progress of the APPG and the support of colleagues here and those who will be attending the launch of the group’s report from 4 o’clock in Strangers’ Dining Room, I am pleased to stand here today and say that we are making great strides. There is much more to be done, and we will continue to make progress.

[Several hon. Members rose—]

--- Later in debate ---

[Henry Smith]

In the remaining moments of this debate I would like to express my gratitude to you, Mr Wilson, for chairing this very informative and useful debate. I am grateful to right hon. and hon. Members for their speeches, interventions and the many personal accounts that really highlight the importance of ensuring that we properly tackle blood cancer for all our loved ones across the country. I also have real gratitude to those voluntary sector organisations and charities that have been mentioned today for their remarkable work on behalf of so many people and for supporting the all-party parliamentary group on blood cancer. I am also grateful to the many patients and families who have contacted me and have supported the all-party parliamentary group with our report, which—I will mention it one more time—will be launched in the Strangers’ Dining Room in the next few minutes. I thank them for their input.

This is obviously a very emotional issue for many people, and I pay tribute to the courage of patients and their families. Those who have lost loved ones through blood cancer leave a fine legacy in ensuring that we fight—I join the Minister in using that word deliberately—blood cancer, so that we can ultimately find cures and better treatments. Finally, I am grateful to the Minister for his thoughtful reply, his work on cancer issues in the Department of Health and his fine legacy of work in the past.

Motion lapsed (Standing Order No. 10(6)).