Below is the text of the speech made by Mark Tami, the Labour MP for Alyn and Deeside, in the House of Commons on 22 November 2018.
I am grateful to be granted this debate on psychological support after cancer treatment. I recognise that there will probably be fewer Members here than there have been in the last few hours, but I thank anyone who stays to hear what I have to say.
When we talk about cancer, the conversation often starts with survival. Overall, survival has doubled in the last 40 years in the UK, but we lag behind the best in Europe, and survival rates for certain cancers—such as lung, brain and pancreatic cancer—continue to be extremely low. That means there is, rightly, a drive towards earlier diagnosis and access to new and innovative treatments. However, for most patients, just living is not enough. They want to live well, and that is why we must do more to ensure that patients receive the best possible psychological support after cancer treatment.
It goes without saying that cancer can take a huge emotional toll on patients and those close to them, right from the moment of diagnosis. Less well understood are the consequences of cancer treatment, which can affect patients’ lives on a daily basis and leave them needing support for many years afterwards. No group illustrates that better than stem cell transplant patients.
Every year in the UK, around 2,000 blood cancer patients need a stem cell transplant from a donor to save their life. It is usually their last hope. One third of patients will be lucky to find a matching donor in their families, but the remaining two thirds of patients will require an unrelated donor. The search for a donor can be extremely stressful. Despite the fact that there are more than 1.4 million incredible individuals on the UK stem cell donor register, there are still patients who miss out on the life-saving transplant they need because either no donor is available or a donor cannot be found early enough.
My experience with my son was that we were very fortunate to find a donor. That donor then failed his medical, which was a traumatic experience for the family. Not only were we concerned about what the problem was for the donor, but we did not know whether the donor would return to fulfil that pledge. We will be eternally grateful that he did.
Even when a patient does find a match, this is not the end of their journey. Tellingly, the day of the stem cell transplant is commonly referred to as day zero. First, the patient must spend a number of weeks in hospital isolation to protect them from infection. This alone can be a very difficult experience, with patients often feeling very cut off from the outside world. Things such as patchy wi-fi, poor facilities and rooms without windows do not exactly help with this experience. Hopefully, the patient then begins their recovery, which brings with it entirely new physical, emotional and practical challenges. In fact, of all cancer treatments, stem cell transplant patients experience some of the most severe long-term effects, and it is for that reason that they are often described as patients for life.
To give hon. Members some idea of what it can be like for those living with the long-term effects, approximately half will suffer from graft versus host disease, which is when their new immune system attacks their own body. I can certainly say that this is not a particularly pleasant experience, and in the worst cases it can actually kill the patient as well. Patients can also experience infertility, premature menopause, sexual dysfunction, fatigue and problems with their eyes, bones, teeth, joints and muscles, and they are at higher risk of infections and second cancers. In addition, it is not unusual for patients to be left with a range of psychological effects, including depression and post-traumatic stress disorder. All of this can have an impact on patients’ ability to study and work, and with that can come financial issues and even a loss of their identity. It can be completely and utterly overwhelming.
With all this in mind, it is perhaps not surprising that in response to a survey of more than 300 stem cell transplant patients conducted by Anthony Nolan, the UK’s stem cell transplant charity, nearly half—47%—said that they needed emotional and psychological support, such as counselling or group therapy. It is surprising and even shocking that only half—54%—actually received it.
Let us take some individual cases. Joanna received a stem cell transplant in 2016 to treat acute myeloid leukaemia. It saved her life, but when she got home to her family, she could not get off the sofa or out of bed. It was the worst she had felt since the actual diagnosis. Her daughter was only a teenager at the time, and the caring role of mother to child had to be reversed. In Joanna’s own words:
“I think my lowest emotional time was after transplant. I questioned why I’d gone through this experience and just couldn’t see an end in those first three to four months… I wish there had been more psychological support for me and my family—even though staff tried their best, when I really needed help, it just wasn’t there.”
Joanna’s story is not unique.
Ruth, a teacher from Yorkshire, also received a stem cell transplant in 2016. In the two years since, she has experienced many ups and downs, and she is still dealing with chronic graft versus host disease. For her, this means her eyes are constantly dry, she cannot perform fine motor skills too well and her feet are in constant pain because of nerve damage. Ruth says:
“The biggest downside of my whole transplant experience has been the complete lack of support since leaving hospital. It felt like I was on my own—my GP has offered me nothing. I’m on the waiting list for a counsellor, but it’s very long… I’m surprised you’re not referred to a counsellor as soon as you’re diagnosed.”
As well as those patients who have received transplant, the charity Macmillan has provided me with some other brief personal stories. Let us take Frances, who finished treatment for Hodgkin’s lymphoma five years ago. She says:
“Emotionally, in the first year after treatment I think I was shell-shocked because you’re trying to catch up with everything that has happened to your body. You feel like you’re a failure and you’ve failed to bounce back in the way you think you should have done.”
Ciara, who finished treatment in 2016, says:
“The fear of cancer never leaves you but I’m trying now to think, if it comes back, it comes back. I can’t live under that shadow. But it is so difficult to mentally recover.”
Finally, Chris, who finished his treatment for head and neck cancer in 2016 stated:
“People say to me, ‘I bet you wake up every morning feeling glad to be alive.’ You know, it can’t be further from the truth.”
The stories from Joanna, Ruth, Frances, Ciara and Chris affect all cancer patients—they cover everybody.
So what do we need to do? First, psychological support is for everyone, not just those with diagnosed mental health conditions. Secondly, the families of patients should also be offered psychological support, and thirdly, it seems that patients and their families are not getting the psychological support they need. Let me address those points in turn.
First, psychological support is for everyone, not just those with diagnosed mental health conditions such as depression or post-traumatic stress disorder. That includes patients who are feeling anxious, worried or frightened, and those who are having trouble adjusting to their “new normal”. The fear of cancer returning can be particularly difficult to manage. For example, some blood cancers relapse, which can be a common occurrence. Even if someone is doing physically well, that sense of dread never goes away for them or their family members.
Because of patients’ varied needs, psychological support can take many forms. Clinical psychologists and others working in improving access to psychological therapies services are able to help those with the most complex needs. Clinical nurse specialists, who we know are hugely valued by patients, can enhance overall wellbeing by providing general emotional support based on skilled communication and effective provision of information. The third sector, meanwhile, provides a wide range of services, including helplines, online forums and peer support. There is no silver bullet, however, and many different actors have a role to play.
Secondly, patients’ families should be offered psychological support because they too feel the consequences of cancer treatment. If someone is acting as their loved one’s carer, that can affect their relationship and ability to go about their daily life. They might have suddenly become the family’s main breadwinner, which could be a source of enormous stress. Family members will often feel as if they have to put a brave face on things and somehow do not deserve help because they are not the ones who are ill. In reality, however, patients regularly say that they worry more about their family than themselves and that in turn can affect their recovery. I know from personal experience that the CLIC Sargent nurse who came to us on a weekly basis to give my son chemotherapy was somebody to talk to who understood, and that side of the process was just as important to us as the medicine being given.
Thirdly, patients and those close to them are not getting the psychological support they need. According to the most recent results from the national cancer patient experience survey, only two thirds of patients felt that they were able to discuss their fears or worries, and I hope the Minister will respond to that.
In many cases, this comes down to workforce—either not enough specialists are available who properly understand the consequences of cancer treatment, or the demands on staff time are so great that it is impossible to provide patients with adequate psychological support.
In response to a 2017 survey of GPs and nurses, 31% of respondents said that workforce pressures mean patients are not being supported to regain a good quality of life after treatment. In other cases, the right support existed but patients are not being appropriately signposted. I have heard of many patients having to be proactive and find help for themselves. Patients should certainly be empowered to take control of their own care, but I think we all agree that this should be a choice and not a necessity. They should not be let down by poor communication and co-ordination, but in many cases they are.
The Minister may refer to the recovery package in her response. It consists of four main interventions: a holistic needs assessment and care plan; a treatment summary; a cancer care review; and access to a health and wellbeing event. This can certainly help to identify patients’ psychological needs and I welcome the fact that NHS England has committed to rolling out the recovery package nationally by 2020. However, does the Minister agree that identifying patients’ needs is only one piece of the puzzle and that more needs to be done to ensure they actually receive the right psychological support?