CLLSA - APPG on Blood Cancer Summary of Discussion 17th Jan 2018

A debate took place in Westminster Hall on Blood Cancer Care in the NHS on the 17th Jan 2018. Much of the debate set the scene for the launch of the All-Party Parliamentary Group (APPG) on Blood Cancer inaugural report 'The Hidden Cancer - The Need to Improve Blood Cancer Care.'
MPs participating in the debate included:
Henry Smith (Crawley) (Con)
Nick Thomas-Symonds (Torfaen) (Lab)
John Howell (Henley) (Con)
Mark Tami (Alyn and Deeside) (Lab)
Mike Hill (Hartlepool) (Lab)
Julia Lopez (Hornchurch and Upminster) (Con)
Phil Wilson (in the Chair)
Royston Smith (Southampton, Itchen) (Con)
Mr. Philip Hollobone (Kettering) (Con)
Colleen Fletcher (Coventry North East) (Lab)
Mr. Gregory Campbell (East Londonderry) (DUP)
Colin Clark (Gordon) (Con)
Jim Shannon (Strangford) (DUP)
Dr. Philippa Whitford (Central Ayrshire) (SNP)
Mrs. Sharon Hodgson (Washington and Sunderland West) (Lab)
Steve Brine - The Parliamentary Under Secretary of State for Health
Here, we provide a summary of the discussions most relevant to people living with CLL and our thoughts on the points raised by MPs. 
Detection, diagnosis, and prevalence:
John Howell (Henley) (Con) highlighted that blood cancers are a 'hidden' cancer with key differences to solid tumours and remarked that they can be difficult to detect. John Howell then asked Henry Smith (Crawley) (Con) and Chair of the APPG on Blood Cancer, what was being done to encourage early detection.
Henry Smith concurred that there are key differences between solid tumours and blood cancers that need to be addressed and stated: "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".
To aid early diagnosis, Henry Smith cited there is a need for "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."
Henry Smith also highlighted that many patients are having to go to their GP many times before receiving a diagnosis. Royston Smith (Southampton, Itchen) (Con) commented that there is "weakness within the system that means that GPs are not diagnosing early enough" and asked what could be done about it.
Henry Smith stated that "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...GP education and training needs to be improved to increase knowledge of blood cancer symptoms".
The importance of using the word 'cancer' at the point of diagnosis was discussed. Henry Smith noted, "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".
Dr. Philippa Whitford (Central Ayrshire) (SNP) commented: "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....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."
Steve Brine - The Parliamentary Under Secretary of State for Health noted "... for suspected blood cancers, the National Institute for Health and Care Excellence published a revised guideline in 2015, which clearly sets out that GPs should consider a very urgent full blood count within 48 hours to assess for leukaemia, if adults present with suspicious symptoms. I am very sure that there is more that we can do around education in primary care, but I think that was a positive move from NICE."
CLLSA is delighted to see a clear call to action for GPs to undertake blood tests immediately if any patient presents with one of more signs of blood cancer. Since the debate has taken place, the Royal College of General Practitioners has issued a statement 
recognising the need for timely diagnosis but that "Any decision to pursue opportunistic testing must not be undertaken lightly as GPs need a good scientific evidence base before they order any investigations...The RCGP is working with Cancer Research UK, and others, to develop resources to support GPs in the timely identification and diagnosis of cancer". CLLSA believes that it is imperative that GPs recognise the symptoms of blood cancer and do not delay in requesting blood tests for patients. We are also mindful that a third of people with CLL go to their doctor feeling unwell – swollen lymph nodes, liver or spleen enlargement, symptoms of anaemia, or bruising; but the majority of people with CLL are diagnosed by chance often from a routine blood test taken for another reason. We urge GPs to continue to have a high index of suspicion when a patient presents with symptoms.
CLLSA wholeheartedly agrees that when receiving a diagnosis of CLL, healthcare teams must take the time to explain that this is a form of blood cancer. Failure to communicate with patients leads to confusion and all too often people returning home to Google their diagnosis - if 'blood cancer' has not been clearly communicated and talked through ahead of this time, panic and confusion invariably follow. Clear communication from the start equips patients with the knowledge and understanding they need and empowers them to communicate this with their family, friends, and employers. Information is difficult to process following a diagnosis, and it is essential that time and empathy is given to these essential conversations.
Mark Tami (Alyn and Deeside) (Lab) asked if more should also be done to ensure greater awareness amongst the general public on blood cancers. Henry Smith agreed that public awareness is key in conjunction with improved GP education and understanding amongst cancer policy makers.
With regards to policy makers, Henry Smith commented: "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." Henry Smith called on the Minister for "assurance that the Department of Health and Social Care will engage with such [charity awareness] 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."
CLLSA agrees that ongoing education of blood cancer is essential to improving public, GP and policy makers understanding. CLLSA will continue to play an active role in participating in awareness campaigns such as September's Blood Cancer Awareness Month - working with the media and being active on social media to extend our reach and help educate others. We are pleased to see Henry Smith call on the Government to provide greater support of these awareness campaigns.
Henry Smith highlighted that "Blood cancer patients are not currently receiving the treatment and support they deserve."
Nick Thomas-Symonds (Torfaen) (Lab) highlighted the importance of the stem cell donor register and recommended that people "between the ages of 16 and 30" should sign up to join the register. Henry Smith agreed that "The stem cell register is vital to our addressing this condition going forward and beating blood cancer in the future."
Henry Smith highlighted that "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."
Discussions took place on treatment access and the process behind NICE guidance on medicines. Henry Smith commented: "The process of how the National Institute for Health and Care Excellence [NICE] 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."
Henry Smith added that "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 [Clinical Commissioning Groups]."
Dr. Philippa Whitford added: "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...In Scotland, there is the new medicines fund, and in England, there is the cancer drugs fund...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...I think that the friction between what NHS England commissions and what CCGs are responsible for must be looked at."
Jim Shannon (Strangford) (DUP) added: "There is a need for devolved bodies to work together to ensure that we do not have a UK postcode lottery for the treatment of blood cancers and that an equal level of treatment is available UK-wide."
Steve Brine commented: "We have heard today that treatment of blood cancer is especially dependent on the development of new drugs and on being able to access them—an obvious truism—and that is why our focus is on not only research but ensuring that proven innovations are adopted swiftly across the NHS in England. NICE’s fast-track appraisal process, or the FTA, which was introduced in April last year will, we hope, do just that. The FTA process will help to ensure that cancer patients have accelerated access to any clearly effective treatment that represents value for money for what is a publicly funded health service....My hon. Friend the Member for Crawley said that he would be sending a copy of his report to his local CCG, and I would echo his call for MPs from England who are in the debate today to do the same. MP and CCG relationships are very important to implementing the cancer strategy and reports such as this one."
CLLSA is pleased to see recommendations for MPs to send the APPG on Blood Cancer report to CCGs. Access to effective and well-tolerated treatment is essential, and we need all CCGs to recognise this need and ensure universal treatment access to patients wherever they may live. Undergoing treatment is often physically and emotionally exhausting, and patients need support in managing the long-term clinical problems, such as increased risk of infections, their leukaemia progressing, repeated cycles of treatment and the side-effects of chemotherapies.
Mr. Philip Hollobone (Kettering) (Con) highlighted the needs of people with CLL specifically following a letter from one of his constituents, stating "...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 commented: "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."
Mrs. Sharon Hodgson added: "Each year, 5,000 people with slow-growing blood cancers do not start treatment straight away, but instead are placed on a regime called watch and wait. That means that patients are monitored until they reach a point where treatment must start. It can take many years for that to happen, which can add much pressure to a patient’s life, including the psychological struggles that they might face. That is understandable: it must be excruciatingly difficult for someone to live with a cancer, including a blood-borne one, yet not receive any treatment, even though they know they have the disease. To help fully understand this struggle, I want to read from a case study that was sent to me by Bloodwise, and written by the blogger who writes the “Diary of a ‘Fake’ Cancer Patient.” It states: "About a month after diagnosis, I went to pieces and sat in front of my consultant panicking, crying and generally not coping.” Reading the full case study is harrowing but heart-warming at the same time. That may sound peculiar, but it shows the scale of the struggle that blood cancer patients face under “watch and wait,” and also that when support is offered, they can lead as normal a life as possible, and have the support to cope with the disease and the situation in which they find themselves. That is why Labour supports calls for tailored psychological support for patients who are on watch and wait, and it would be welcome if the Minister addressed that point when he replies to the debate."
Colin Clark (Gordon) (Con) noted that "Across Scotland, vacancy rates for consultants and nurses are disappointingly high, with 400 consultant posts now unfilled. Both north and south of the border, shortages are damaging. NHS staff and patients alike must have the security of knowing that their local oncology department is, and always will be, adequately staffed and given the support that it deserves."
Dr. Philippa Whitford added: "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."
Steve Brine commented: "My hon. Friend makes the point that many patients with a chronic blood cancer diagnosis will sadly never be cured. They will be on a regime of watch and wait, often over many years, to see if the cancer has progressed to a point where treatment needs to begin. That can, understandably, take a huge psychological toll on the patient and their families. That is why the point made by the hon. Member for Central Ayrshire is so true, and why the recovery package rightly takes a holistic approach and considers the patient’s mental health needs. The Prime Minister has made improving access to mental health services a priority for her Government. There has been a fivefold increase in the number of people accessing talking therapies since 2010, but we know there is much more to do, and I will be watching that like a hawk in my job."
CLLSA is enormously grateful to Mr. Philip Hollobone's constituent for writing to his MP to ensure the psychological needs of people with CLL were highlighted in the debate. As noted earlier in this summary, time and empathy are essential to ensuring understanding and clarity at the point of diagnosis, and we are actively looking at how this can be improved. CLLSA is partnering with Leukaemia Care to formulate guidelines on patient-consultant communication to assist these discussions and ensure there is greater awareness of the need for psychological support throughout our lives with CLL.
Clinical Nurse Specialists (CNS):
Henry Smith highlighted that "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."
Henry Smith went on to "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" and added "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."
Steve Brine commented: "My hon. Friend made the important point in his opening remarks that access to a CNS can make a hugely positive difference to the treatment experience of patients with blood cancer. Health Education England’s first ever cancer workforce plan clearly stated that we will ensure that every patient has access to a CNS or other support worker by 2021, and if we can do it sooner we will. We will do this by developing national competencies and a clear route into training...Macmillan—a brilliant charity—is also currently carrying out a specialist audit to understand the current size and location of the specialist cancer nurse workforce. This will enable us in the Department and NHS England to develop a much more comprehensive picture of how many specialist nurses are working in cancer and what further action and investment might be required to ensure timely and good quality patient care and experience in line with the target that I have set out. Once we have this data, I hope in the spring, we will publish an additional chapter to the cancer workforce plan, and consider the actions needed to support and enhance the wider nursing contribution to cancer. My hon. Friend the Member for Gordon (Colin Clark) spoke of workforce shortages north of the border. It is a familiar tale. We both face a cancer workforce challenge, which is why HEE produced our cancer workforce plan. It is a significant challenge to the NHS and cancer care, but one that we are absolutely determined to meet head-on and to beat."
CLLSA is very keen to see all patients with CLL have access to a Clinical Nurse Specialist. We eagerly await details of Macmillan's audit and look forward to seeing the new chapter published in the cancer workforce plan.
Mike Hill (Hartlepool) (Lab) asked whether Henry Smith agreed that "there is a need to better finance research into blood cancer developments"?
Henry Smith praised the investment charities have made in funding research in blood treatments and asked that "the Minister...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."
CLLSA will continue to advocate patient needs to help empower people with CLL.
The full debate transcript can be read at:,
and the APPG on Blood Cancer report is available at: