Terminal Illness: Mental Health Support

I beg to move,

That this House has considered mental health support for people with terminal illnesses.

It is a pleasure to serve under your chairmanship, Sir Jeremy. I am here today because of my constituent Mike, who I am pleased to say is in the Gallery to watch the debate. In 2019, Mike experienced the devastating grief of losing a partner, but out of the trauma he is pushing for change and campaigning for better mental health support for those with terminal cancer. I pay tribute to Mike: he is a remarkable man. I thank him for bravely sharing his story with me, and I will try my best to do it justice today.

In 2016, Mike’s wife, Sarah, started to suffer with terrible pain in her back, and by the end of that year she was in constant agony. In early 2017, they found out that Sarah had lung cancer, which had spread to her spine, and she was given six months to live. A course of gruelling treatment followed, including major spinal reconstruction surgery and targeted therapy. In September 2019, Sarah succumbed to her illness, passing away a week before her 53rd birthday.

Sarah lived more than a year longer than doctors had initially predicted, and in that sense her treatment was a success, but that does not tell the whole story. There was a gaping hole in Sarah’s treatment: the lack of appropriate mental health support. Not having that support had a huge impact on Sarah’s quality of life, as well as her family and her family’s quality of life. Following her terminal diagnosis, as the devastating impact of cancer started to take its toll on her body, Sarah became deeply depressed and suffered with anxiety.

We know about the physical symptoms of cancer, such as nausea, crippling pain or a loss of mobility, and just how horrendous those symptoms are, but we talk less about the mental health effects, even though they are as common and sometimes the most crushing consequence of this awful illness. That was certainly the case with Sarah. A previously happy, outgoing and vibrant woman, who loved design, gardening and reading books, she became a shell of her former self—unwilling to go outside, not even to sit in the garden she had so lovingly cared for. She cried every day, sometimes all day, and could not eat, could not read a book and did not know what pleasure felt like. As Mike said to me the very first time we met, “Sarah disappeared into herself.” I cannot begin to imagine how hard that was or the toll it took on Sarah, Mike, her entire family and her friends.

Shamefully, Sarah never saw a psychologist or psychiatrist, and she never had a serious or rigorous mental health assessment. Sarah was offered counselling and cognitive behavioural therapy by Macmillan Cancer Support and local NHS services, but we all know the issues with those services. Waiting lists can be months long, and when Sarah did get therapy, it was often for just a few weeks at a time, before she was back on another waiting list.

Too often, as in this case, the kind of therapy offered is not appropriate for the needs of the patient. Sarah would leave her CBT sessions clutching leaflets that she was supposed to go away and read, even though she could not even look at a newspaper. She was once told to go and do some gardening when the debilitating effects of her cancer had already taken that big joy out of her life. What was needed was treatment by a psycho-oncologist—someone who would offer specialist psychological care for someone affected by cancer—but the one psycho-oncologist at her local hospital was badly overstretched and the appointment never came.

As Mike has so eloquently said, this is not a criticism of our dedicated NHS or care staff. They are not to blame for a health culture that has always been more interested in the physical than in the psychological. That deficiency, in reality, is unlikely to change without more scientists and funding bodies devoting time and cash to researching therapies to support the mental health of those with terminal illnesses. From my perspective, there seems to be precious little work being done in this area; I spoke to Macmillan and other charities ahead of this debate, and they said the same. That deficiency is despite the fact that 17% of cancer patients will be diagnosed with depression and anxiety, but almost half will not receive the treatment that they need—that must change.

I ask the Minister to seriously consider the policy suggestions made by Mike: more funding to map service provision across the national health service to identify good and bad practice, including an assessment of the effectiveness of current National Institute for Health and Care Excellence guidelines on mental health support for the terminally ill; more funding to recruit more psycho-oncologists to work in our palliative care system; a commitment to an immediate baseline mental health assessment for patients upon their diagnosis with a terminal illness and, if needed, a clear pathway for referral to an experience psycho-oncologist on diagnosis of terminal illness. I believe that those are practical and, I hope, achievable steps that could make a real difference to cancer patients.

I thank the hon. Member for giving us an opportunity to talk about this incredibly important issue. I agree 100% with the recommendations that he is making. I also point to the important work that hospices do. A lot of hospices, such as Weldmar and Julia’s House in West Dorset, provide mental health-led hospice services to communities, yet, at the same time, are under extraordinary funding pressures. Weldmar has a £1 million deficit; Julia’s House gets just 8% of its funding from the NHS, yet it is relieving pressure on the NHS. Does the hon. Member think that, along with his recommendations, a sustainable funding model for hospices providing the kind of care that he is talking about is important?

I am sure that there is recognition on both sides of the House of the incredibly important work that hospices do to support patients in our communities. I am sure that the hospices that the hon. Member mentioned will be grateful for the recognition of their important work. Of course we need to ensure sustainable funding. As he will be aware, this Government have already invested a significant amount in hospice care, but I appreciate the pressures that many hospices still find themselves under.

I would be grateful if the Minister would meet Mike and me to discuss Mike’s policy recommendations in more detail and to see if they could form part of the Government’s welcome review of palliative care services and the framework that has been announced. It feels particularly pressing at this juncture, as the Terminally Ill Adults (End of Life) Bill progresses through Parliament. Although I support that legislation, I worry about the prospects of those with a terminal diagnosis. I am sure that the Minister will want to reflect on that in his response.

I thank my hon. Friend for sharing the story of Sarah and Mike—he did it justice. It is really important to think about the whole care of people going through a terminal diagnosis—both the patient and their loved ones. We should make sure that the mental health of those people who are supporting the person going through a terminal illness is also considered in this conversation.

I could not agree more that throughout treatment we need a whole-person approach. It is the stated aim of the Government to develop that offer in our communities and in our national health service. The extraordinary toll it takes on friends and families is something that our health system should think more about, and we should give more consideration to.

The issue is so important that if we do not get it right, as I think Members across the House would reflect, the consequences may be tragic for people going through their most difficult times and experiences. For Sarah and Mike and the countless other people touched by cancer, I urge the Minister to work with me and Mike on improving mental health support for those with a terminal diagnosis.

I am grateful to the hon. Gentleman for opening the debate. I say this mostly for the benefit of those in the Public Gallery, but we are expecting votes in the main Chamber soon. If that happens, I will suspend the sitting and we will reconvene when the votes are complete. I call Jim Shannon.

It is always a pleasure to serve under your chairship, Sir Jeremy. I want to say a big thank you to the hon. Member for Altrincham and Sale West (Mr Rand) for setting the scene so very well. He obviously has the necessary compassion and understanding. We recognise the pain that he referred to, which is suffered by many across the whole of the United Kingdom.

I am my party’s health spokesperson, so these issues are important to me. The lasting mental impact of a diagnosis of a terminal illness must never be underestimated. Definitions can differ, but have more or less the same meaning. Terminal illness is defined as a progressive, incurable disease not expected to be cured, where medical opinion is that death can reasonably be expected within roughly a year. I know there are exceptions. Some people live for six weeks and some for six years after getting a diagnosis. When someone is given a terminal illness diagnosis, they right away look at their whole life and those around them. I cannot imagine the feeling of being told that news and where the mind must go to. The reality is much more frightening than the thought.

A study by Marie Curie found that nine in 10 frontline staff supporting dying patients reported that patients were lonely—I think that was referred to earlier. A similarly high proportion report loneliness among end-of-life carers. The same report shows that loneliness at the end of life is strongly linked to worse physical health and mental ill health.

I remember a couple of occasions when I had to go and see people I knew who had been given a terminal illness diagnosis. One lady came back from holiday and was not feeling her best, so she went to see the doctor. The doctor told her she had liver cancer, and that lady did not last six weeks. I pay tribute to all the charities that do great work, Marie Curie in particular. The people are so compassionate, understanding and loving, and are always there when people need them most.

Queen’s University Belfast in Northern Ireland stated that there are high levels of death illiteracy in Northern Ireland, meaning that those diagnosed with a terminal illness often have a true lack of understanding about how to access end-of-life and bereavement support, because they are so consumed—I am speaking in a generic way—by what is happening in their life and around them. This can be deeply worrying in terms of the mental turmoil of individuals and the people caring for them in their darkest times. There is a belief in taking the pressure off and knowing what the next steps are. More work must be undertaken to ensure there are no barriers to accessing care and to ensure people are aware of their options for end-of-life and palliative care.

It is a pleasure to serve under your chairship, Sir Jeremy. I thank my hon. Friend the Member for Altrincham and Sale West (Mr Rand) for securing this important debate and for his excellent speech sharing Sarah and Mike’s experience.

As a former manager in the NHS, I was shocked to read the recent report by the Health and Social Care Alliance Scotland, which described how thousands of people with terminal illnesses spend their final months in poverty, and how the situation is particularly severe in North Ayrshire. In my constituency, high rates of socioeconomic deprivation worsen the quality of life for many people, let alone for those with a terminal illness. Sadly, people in their final months of life are experiencing not only health inequalities, but economic inequalities, exacerbating the need for good, timely and appropriate specialist mental health support.

I recognise the excellent work undertaken by Ayrshire hospice, such as its community-based “living well” hubs and clinics. However, more must be done to support those in need of specialist mental health support, especially at such a traumatic time for not only the person, but their family, friends and wider circle.

New figures from National Records of Scotland show that people in North Ayrshire have the lowest healthy life expectancy in Scotland, at 52.6 years for men and 52.5 years for women. That is about 14 years shorter than for people in areas with the highest healthy life expectancies, and it cannot be allowed to continue.

The Mental Health Foundation stated in its manifesto recommendations for next year:

“Scotland is in the grip of a public mental health emergency, characterised by lengthening waiting lists for diagnoses and treatment, extended absences from work and a mental health workforce stretched towards breaking point.”

That situation makes it particularly challenging to focus on those with a terminal illness.

Finally, it is important, when we speak about mental health support for those with terminal illnesses, that we recognise that it must be delivered in a timely and effective way, to ensure that people have the best support available at the most difficult time, when they absolutely require it.

It is a pleasure to serve under your chairship, Sir Jeremy. I thank the hon. Member for Altrincham and Sale West (Mr Rand) for bringing this important topic for debate.

When we talk about mental health, we often picture everyday stress, anxiety or the long waits for talking therapies, but there is a group of people whose mental health needs are profound, urgent and too often invisible: people living with a terminal illness. That is not a topic that we often think about in the grand scheme of mental health provision, but the need for emotional and mental support in that medical situation is momentous—a need that I hope none of us here ever experience.

Mental health services and support in our country are at breaking point. More than 1.5 million adults in England—not necessarily suffering from a terminal illness, but just adults generally—are waiting for mental health support and treatment, and more than 500,000 children. Patients are eight to 12 times more likely to wait for mental health treatment than they are for physical health support. While waiting, approximately 42% of patients deteriorate and seek further assistance through A&E and other NHS services, increasing the burden on our already stretched NHS.

For people with a terminal illness, the situation is even grimmer and bleaker; it brings fear, grief, uncertainty and, for many, isolation. Those feelings affect not just the person who is diagnosed, but partners, children and family members, who carry the emotional weight of uncertainty and the news they have just received. Yet mental health support at the end of life is still inconsistent, still underfunded and still far too dependent on location and charity rather than on rights and entitlements. Right now, access to mental health support at the end of life is a postcode lottery—one of the most troubling parts of this whole issue. In some areas, people can receive specialist psychological support, family counselling or bereavement services as part of their palliative care; in other areas, those services simply do not exist.

It is an honour to serve under your chairmanship, Sir Jeremy. I thank the hon. Member for Altrincham and Sale West (Mr Rand) for securing this debate and for speaking so movingly and emotively.

I can only imagine the mixture of emotion someone feels when they receive a terminal diagnosis. We know that around six in 10 people referred for hospice care have significant psychological support needs, but there is a lack of good, standardised mental health provision for people receiving hospice care. More than 10% of suicides in the UK are in some way linked to either chronic or terminal physical illnesses, so there is a mental health undercurrent running through the heart of end-of-life care.

Like many other Members, I want to pay tribute to the extraordinary hospices in my constituency. I have visited them and taken part in local fundraising events for them. I did 12 hours of exercise for Winchester hospice —I was doing boxing around midnight, and I can still feel it now, even though it was about a week ago. The inspiration I got from seeing so many members of the community raising money for Winchester hospice, or for children’s hospices Naomi House and Jacksplace, is unbelievable; so is the dedication of the staff and the volunteers, working in some of the most emotive jobs possible. It is a lifeline for the families affected by having a relative or a child with a terminal illness.

Hospices across the UK are under immense strain, and only 16% of people attending them believe that their psychological support is adequate. Too many people approaching the end of life are pushed towards the overstretched NHS mental health services. If someone ends up on the conventional mental health path, they may be put on a waiting list that is more than a year long—and, I am sorry to say, they may not have that long to live. We must also recognise the quiet heroism of unpaid carers. They give up work, rest and any sense of normality to care for someone they love, and most of them receive no formal bereavement support at all. Their contribution is vast, but their support is minimal.

The old adage we often hear is that there are two certainties in life—taxes and death. We spend a lot of time in this House talking about the former and very little time speaking about the latter, even though we know it will affect us; I have argued that both as a doctor and in this House since I was elected.

I take my hat off to the hon. Member for Altrincham and Sale West (Mr Rand) for securing this debate. It is so important and it will affect all of us. We are informed by the work of our constituents, so I also put on record my thanks to Mike for his incredible story and for the memory of Sarah that he has brought to this place, at the highest level, so that we can have this debate about how we can improve the condition of those in their time of greatest need.

In the few minutes I have, I will distil this debate into three areas: first, the location of mental health care, secondly, the workforce and, thirdly, the plan. On the first point—I have raised this with the Minister before—hospices often provide a lot of mental health support, but they are struggling. Many are closing beds and many are in deficit. Together for Short Lives estimates that the national insurance contributions increase costs an average hospice at least £130,000. After a previous debate on hospices, I asked the Government in a letter of 10 November, to which I have not yet had a response, whether they will consider an impact assessment on the state of hospices.

The National Audit Office’s report into hospices states:

“DHSC and NHS England do not know what proportion of the total amount of palliative and end-of-life care provided in England is delivered by the independent adult hospice sector, and therefore how reliant they are on the sector.”

That is an important point in understanding the fabric and make-up of provision, as well as the postcode lottery in provision, which the hon. Member for Dewsbury and Batley (Iqbal Mohamed) pointed out. If we want to improve provision, we need to understand what is there in the first place.

It is a pleasure to serve under your chairmanship, Sir Jeremy, and I start by sincerely thanking my hon. Friend the Member for Altrincham and Sale West (Mr Rand) for securing this debate. I also welcome Mike and his family to the Public Gallery, and pay tribute to Mike for all his efforts.

My hon. Friend raises an important issue that can affect so many people—all people perhaps, at some point—about ensuring that when someone is diagnosed with a terminal illness, they can receive the mental and emotional support that they need in the place that they need it. We want to be a society where every person receives high-quality, compassionate and personalised care from diagnosis through to the end of life. The Government are determined to shift more healthcare out of hospitals into the community to ensure that patients receive personalised care in the most appropriate setting.

Palliative care and end-of-life care services, including those provided by hospices, have a big role to play in that shift. Palliative care services are included in the list of services that an integrated care board must commission, promoting a more consistent national approach and supporting commissioners to prioritise palliative care and end-of-life care. To support that process, NHS England has published statutory guidance stating that ICBs must work to ensure that there is sufficient provision of care services to meet the needs of their local population. It also includes references to mental health, wellbeing and support for those with palliative care and end-of-life care needs.

Of course, there are many examples of voluntary initiatives, such as grief or bereavement cafés, or the Good Grief community, which aims to support people at the end of their life and their families through a programme of events and courses, and the provision of resources that often include pre-bereavement advice and support.

I know that my hon. Friend the Member for Altrincham and Sale West feels passionately about mental health support for those with palliative care and end-of-life care needs, and that he has been supporting Mike’s campaign for improved mental health services and support. I offer him my deep appreciation, as well as a meeting with the Minister for Care and end-of-life care officials, so that we can engage him around the palliative care and end-of-life care modern service framework that was recently announced, which we hope to publish in the spring.

The Minister is indeed right to say that there was an injection of cash, but the proportion of funding being spent on mental health was actually cut. The written ministerial statement is very clear that that proportion went from 8.78% to 8.71%, which the royal college said was about £300 million of investment. Can he confirm from the Dispatch Box—if he cannot, he can write to me later—whether the Government are still committed to the mental health investment standard, or is that commitment going to change? Currently, it is unclear whether they are still committed.

The mental health investment standard is something that we expect ICBs to meet. I will gently push back on what the hon. Gentleman is saying because, as we have been so succinctly reminded in this debate, investing in mental wellbeing is about more than just headline figures. For instance, we need psychology in oncology, in children’s health, and in other forms of cancer care. The provision of such services is not always recorded in the way that the hon. Gentleman would wish it to be recorded, but there are still formats and sub-types of mental health support.

The Government are also keen to press ahead with our 10-year plan, and we are setting out ambitious plans to boost mental health support across the country while delivering the shift from hospital to community. As part of that process, we wish to open around 85 mental health emergency departments, reducing pressure on busy A&E services, which are the last places that people with mental health needs should be, and ensuring that people have the right support they need in a calm, compassionate environment.

We will also use new integrated health organisations to break down barriers between services, which I also think is really important in the context of this debate, and to ensure integrated and holistic care, addressing both physical and mental healthcare needs, with more freedom to determine how best to meet the needs of those local populations. That will build on the work that has already begun to bring down waiting lists. As I said, we are investing an extra £688 million this year to transform mental health services. On staffing, I am pleased to say that almost 7,000 extra mental health workers have been recruited since July 2024, against our target of 8,500 by the end of this Parliament.

We are also expanding talking therapies, and we have committed to continuing that expansion over the coming years. More adults already benefit from better access to those therapies, and the aim is for over 900,000 people to complete a course of treatment with improved effectiveness and quality of services by March 2029. Anyone who develops a common mental health condition, such as anxiety or depression, in any context, including terminal illness, can self-refer to talking therapies. [Interruption.]

Order. I am sorry to interrupt the Minister, but a Division has been called. I am very much in the Minister’s hands at this point, and I am conscious that there may be more he wishes to say. If he has only a minute or two of his speech remaining, I gather there will be several Divisions, so I do not want to force everyone to come back for just that. If he has more to say, there is of course more time for him to take, and the same applies to the hon. Member for Altrincham and Sale West. I am in the Minister’s hands; does he wish to conclude now, or would he rather come back?

I am grateful for your direction, Sir Jeremy. I need one minute to conclude my remarks, and I will then pass on to my hon. Friend the Member for Altrincham and Sale West.

Order. I am afraid that we will now need to suspend as the Division is active. I will suspend the sitting for 15 minutes for the first Division and for 10 minutes for any subsequent Divisions. I gather that there may be several Divisions, so I apologise to the Minister and all other Members who will have to wait.

On a point of order, Sir Jeremy. We have 15 minutes to go and vote for the first Division. I am not telling you what to do, but if we need only two minutes, can we conclude the debate? There will be four votes; the first will take 15 minutes, and the other three will take 10 minutes each, which means it will be 45 minutes before we can come back.

I do not want to compress the debate, as I appreciate it is a very sensitive subject. If the Minister can complete what he has to say in less than a minute, I will allow him to do so. If he needs longer, I will allow that after the Divisions.

Thank you, Sir Jeremy. Can I reassure all Members participating in this debate of the Government’s commitment to deliver on the issues that have been raised? We will work constructively with everyone, including patients and their families, as we develop the framework that Members have already outlined. We will also work with other mental health partners, local authorities and charities so that everyone can be assured that the Government are playing their part in delivering a better standard of access to care for not only palliative care but mental health care in that context.

The hon. Member for Altrincham and Sale West may have a very brief word.

I thank everyone who has contributed to the debate in a really constructive way, and I hope that we can work together on both sides of this House to tackle this important issue. I am incredibly grateful to the Minister for his response, and for offering a meeting with myself and Mike. Of course, my last thanks go to Mike for sharing his story with me in such a personal and considered way.

I am very grateful to the hon. Member.

That this House has considered mental health support for people with terminal illnesses.