PARLIAMENTARY DEBATE
Mental Health and Long-term Conditions - 16 May 2024 (Commons/Westminster Hall)
Debate Detail
Contributions from Ms Abena Oppong-Asare, are highlighted with a yellow border.
[Sir Robert Syms in the Chair]
13:59:52
Peter Dowd
Bootle
I beg to move,
That this House has considered mental health and long-term conditions.
It is a pleasure to see you in the Chair, Sir Robert. I thank all the organisations that wrote to me to provide information, statistics, views, observations and asks on this important matter of mental health and long-term conditions. I want to set out the list of organisations that wrote in, because the fact that so many did so is testimony to the importance and depth of this issue to so many of our constituents. They are: Parkinson’s UK, which requested the debate in collaboration with others, Impact on Urban Health, the British Psychological Society, the Cystic Fibrosis Trust, the Royal College of Psychiatrists, Marie Curie, Versus Arthritis, Genetic Alliance UK, the Juvenile Diabetes Research Foundation —a type 1 diabetes charity—Kidney Care UK, Kidney Research, the MS Society, Scope, Dementia UK, the Centre for Mental Health, the Royal College of Nursing, the King’s Fund, the Local Government Association and, of course, the excellent House of Commons research team, who produced a paper for this debate.
I hope I have caught all the organisations that wrote to me. If I have not, I sincerely apologise to them. The information they provided was very wide-ranging, fascinating, informative, comprehensive and, of course, at times very worrying. Rather than hear from me, I want hon. Members to hear from those organisations. I will quote pretty extensively from what they told me, and I will have asks for the Minister in due course.
People with long-term physical health conditions are more likely than the general population to experience mental ill health. That combination leads to poorer quality health outcomes and a reduced quality of life. The key to improving mental health outcomes in people with long-term conditions is integration between physical and mental healthcare to provide holistic support. As the Minister knows, the Government’s forthcoming major conditions plan contains a commitment to
“much closer alignment and integration between physical and mental health services” .
This debate is a timely opportunity for the Government to tell us more about what that looks like and how the NHS workforce plan will actually support that ambition.
We know that at any one time, up to 40% of people with Parkinson’s will have depression, and up to 30% will experience anxiety—considerably higher than the 17% of the general population who will experience a common mental health problem. The majority of people living with the condition told Parkinson’s UK that their mental health symptoms were the most distressing aspect of it.
Recent research commissioned by Parkinson’s UK found that from an audit of unplanned admissions at University College London Hospitals NHS Foundation Trust, the length of stay for people with Parkinson’s experiencing mental ill health was 29 days, compared with three days for those not experiencing mental ill health. More than two thirds of people affected by neurological conditions reported that their mental health wellbeing needs were not being fully met, and 67% of all respondents—children, young people and adults—to a Neurological Alliance survey said that their mental wellbeing needs were being met to a small extent, or most often not at all.
Diabetes is one of the fastest-growing health crises in the UK. Diagnoses of type 2 have almost doubled in 15 years, and there are now more than 5 million people living with that condition. Evidence shows that people with diabetes are twice as likely to experience depression, and that they experience it more frequently and for longer than the general population. Research suggests that about half of all people with multiple sclerosis will experience depression at some point in their life, and almost half of people with arthritis say that the pain often or always makes them feel down or depressed.
A 2022 survey by Kidney Research UK showed that of the more than 1,000 people who responded, 67% had experienced symptoms of depression, 27% had considered self-harm, and so on. It is not only quality of life that is hugely affected; the economic impact of this issue is vast in reducing people’s ability to work and in increasing health and social care costs.
That puts the issue in context. I want to quote a number of the organisations concerned. As I said at the beginning, I want hon. Members to listen to what people are telling us, rather than what I think they are telling us. That is important. It is the case that 153,000 people are living with Parkinson’s disease in the UK. That is often thought of as predominantly a movement disorder. However, between 50% and 60% of sufferers experience psychosis and 40% have depression. That is according to Parkinson’s UK. It says that those
“who experience anxiety and depression found communication barriers between”
health
“departments, difficulties accessing patient notes, and a shortage of mental health professionals with the knowledge and skills”
to meet their specific needs.
Impact on Urban Health talks about 15 million people in the UK having one long-term condition and about 3 million living with three or more. It says:
“Poor physical health is inextricably linked with poor mental health, and both can be exacerbated by social context, or in other words where and how we live.”
The British Psychological Society says:
“There is a growing evidence base demonstrating the benefits of developing the psychological workforce within physical health care service provision to support earlier intervention, interdisciplinary programmes of care, and a focus on health distress and psychological adjustment as part of rehabilitation and recovery.”
The Cystic Fibrosis Trust says that, in regard to out- patient care,
“the paediatric CF service specifications say ‘there should be access to psycho-social support’ and the adult CF service specifications say ‘there will be access to psycho-social support.’”
Its ask is this:
“Everyone with CF must have access to a CF social worker and clinical psychologist, as and when needed, and not just at their annual review, as NHS service specifications state.”
The Cystic Fibrosis Trust indicates that this is not something that just comes and goes; it is there all the time for many people.
The Royal College of Psychiatrists talks about how having a physical illness can also have a negative effect on how someone thinks and feels. There are impacts in relation to stress, the sense of self, relationships, and understanding of the world. It says:
“Research has shown a link between mental illnesses and certain physical illnesses”
such as cancer, diabetes, asthma, high blood pressure and epilepsy.
Marie Curie says:
“While parity of esteem between mental and physical health is enshrined in law it is not yet being realised. There is limited access to mental health support, insufficient training for health and social care professionals and poor integration of palliative care and mental health care. The Government must centre integrated mental and physical health care within their plans for improving health care.”
The Versus Arthritis organisation says that depression is four times more common among those with chronic pain than those without pain—I do not think that is surprising—20% of people living with osteoarthritis experience symptoms of depression and anxiety, and 33% of people living with rheumatoid arthritis have mental health problems such as depression or anxiety. It says:
“Stress is also a significant factor for people living with arthritis.”
One of its service users, Richard, said:
“I didn’t appreciate just how big an impact my arthritis had on my mental health until I became pain-free. The pain took up so much of my headspace without me realising it. Living in constant pain is incredibly draining because it’s always there, which makes it difficult to enjoy everyday moments.”
Genetic Alliance UK, which colleagues have an interest in, talks about rare conditions that are
“individually rare but collectively common”,
with more than 3.5 million people in the UK living with a rare condition. It says:
“Rare conditions can be life-limiting and life-threatening. Due to their rarity, services are significantly underdeveloped to support people affected by them.”
It also says:
“Almost half of people living with rare conditions and their carers have never been asked about their mental health…and families report being denied access to mental health services due to the complexity of their needs associated with having a rare genetic condition.”
Its solution is:
“It is necessary to urgently improve awareness of rare conditions among healthcare professionals and social care services.”
The diabetes charity Juvenile Diabetes Research Foundation talks about coping strategies:
“Seeking support from healthcare professionals, including doctors, nurses, diabetes educators, psychologists, and social workers, is crucial in developing effective coping mechanisms tailored to individual needs.”
Kidney Care states:
“Addressing the mental health and social needs of kidney patients requires a multi-layered approach combining clinical, community, and policy initiatives. Implementing our recommended strategies will lead to improvements in the overall wellbeing and quality of life for people living with kidney disease while reducing the burden on the NHS.”
I have often heard the word “burden”, but I do not think it is a question of being a burden; it is a question of people’s right to have care, as and when they need it—I never see that as a burden. Kidney Care went on:
“We cannot let the repeated absence of appropriate mental health and social support continue. Now is the time for us to act to ensure that people living with kidney disease get the help they need.”
Kidney Research UK states:
“Having a long-term condition dramatically increases a person’s risk of mental ill health…Having poor mental health as well as a long-term condition leads to worse outcomes for a person’s physical health.”
A thread runs through every single one of these narratives.
According to Dementia UK:
“70,800 people in the UK are estimated to have young onset dementia, when symptoms develop before the age of 65. Yet people affected by young onset dementia remain a hidden population with unmet health care needs.”
It recommends:
“The Government must mandate every”
integrated care system
“to develop a young onset dementia pathway—putting those of working age with dementia at its heart. This includes providing a timely and accurate diagnosis, immediate post-diagnostic support and a co-ordinated care plan”,
because the impact on people’s and families’ mental health also has to be taken into account.
Moving on, Scope wrote that
“we have been extremely concerned about the recent proposals from the DWP following the Prime Minister’s ‘sicknote culture’ which heavily focused on people with mental health conditions. These proposals look to make the benefit system even more hostile, with it becoming more difficult for disabled people to claim the amount they need”.
Basically, that puts more and more stress on people. Scope describes a benefits system that is “dehumanising, stressful and complex”, which impacts on people’s mental health.
Crohn’s and Colitis UK talks about people with inflammatory bowel disease, who are
“twice as likely to experience mental health problems.”
Mental health can be affected in different ways, but the organisation adds:
“Despite the clear impact, most people with Crohn’s or Colitis don’t have access to psychological support…as part of the IBD specialist team.”
Again, that theme runs right through.
The MS Society briefed on mental health and multiple sclerosis:
“People with MS are likely to experience mental ill-health. A survey of the MS community carried out in MS Awareness Week in April 2024 found that nearly half…of respondents experienced mental health difficulties as a symptom of their MS.”
It recommends that the Government
“develop and implement a neurological conditions Talking Therapies pathway”
and
“a training package for the neurological workforce on mental health awareness.”
Kidney Research UK says:
“There are an estimated 7.2 million people living with kidney disease”
in the United Kingdom. It wants the adoption of
“a tailored approach to mental health care through a stepped model that becomes more specialised as needs increase”.
It also wants increased Government funding
“for research into the relationship between kidney disease and mental health to enable the ongoing development of essential services.”
The Royal College of Nursing also wrote to me. It talked about parity of esteem:
“Our members have previously suggested that there is risk in over-emphasising the need for ‘more counselling and brief talking therapy’ without parallel and sufficient investment in services that can help ensure parity”.
I am coming to a conclusion. The King’s Fund talked about a “360-degree review” that looks at prevalence, access, workforce, funding, costs, quality of patient experience, acute mental healthcare for adults, services for children and young people, inequalities, and data. I understand that the Local Government Association has already put its submission on the major conditions strategy in to the Government, but it is sure to talk about taking a whole-systems, assets-based approach.
I have done a Cook’s tour of what organisations have said. There is much more, and I am more than happy to send the documents I have to the Minister so that she or her staff can read them to get a feel for what organisations are saying.
Finally, I thank the House of Commons Library for its briefing, which basically says that people with serious mental illness
“in England die on average 15 to 20 years earlier than the general population. Major causes of death in people with SMI include long-term physical health conditions including diabetes, hypertension, respiratory and cardiovascular disease.”
The thread I talked about runs through every one of the submissions I have read out, and I am sure the Minister has listened to all that I have said. More importantly, I have repeated and put out to hon. Members what all those organisations have said—it is not what I say, but what they say—and I hope she will listen carefully to it.
That this House has considered mental health and long-term conditions.
It is a pleasure to see you in the Chair, Sir Robert. I thank all the organisations that wrote to me to provide information, statistics, views, observations and asks on this important matter of mental health and long-term conditions. I want to set out the list of organisations that wrote in, because the fact that so many did so is testimony to the importance and depth of this issue to so many of our constituents. They are: Parkinson’s UK, which requested the debate in collaboration with others, Impact on Urban Health, the British Psychological Society, the Cystic Fibrosis Trust, the Royal College of Psychiatrists, Marie Curie, Versus Arthritis, Genetic Alliance UK, the Juvenile Diabetes Research Foundation —a type 1 diabetes charity—Kidney Care UK, Kidney Research, the MS Society, Scope, Dementia UK, the Centre for Mental Health, the Royal College of Nursing, the King’s Fund, the Local Government Association and, of course, the excellent House of Commons research team, who produced a paper for this debate.
I hope I have caught all the organisations that wrote to me. If I have not, I sincerely apologise to them. The information they provided was very wide-ranging, fascinating, informative, comprehensive and, of course, at times very worrying. Rather than hear from me, I want hon. Members to hear from those organisations. I will quote pretty extensively from what they told me, and I will have asks for the Minister in due course.
People with long-term physical health conditions are more likely than the general population to experience mental ill health. That combination leads to poorer quality health outcomes and a reduced quality of life. The key to improving mental health outcomes in people with long-term conditions is integration between physical and mental healthcare to provide holistic support. As the Minister knows, the Government’s forthcoming major conditions plan contains a commitment to
“much closer alignment and integration between physical and mental health services” .
This debate is a timely opportunity for the Government to tell us more about what that looks like and how the NHS workforce plan will actually support that ambition.
We know that at any one time, up to 40% of people with Parkinson’s will have depression, and up to 30% will experience anxiety—considerably higher than the 17% of the general population who will experience a common mental health problem. The majority of people living with the condition told Parkinson’s UK that their mental health symptoms were the most distressing aspect of it.
Recent research commissioned by Parkinson’s UK found that from an audit of unplanned admissions at University College London Hospitals NHS Foundation Trust, the length of stay for people with Parkinson’s experiencing mental ill health was 29 days, compared with three days for those not experiencing mental ill health. More than two thirds of people affected by neurological conditions reported that their mental health wellbeing needs were not being fully met, and 67% of all respondents—children, young people and adults—to a Neurological Alliance survey said that their mental wellbeing needs were being met to a small extent, or most often not at all.
Diabetes is one of the fastest-growing health crises in the UK. Diagnoses of type 2 have almost doubled in 15 years, and there are now more than 5 million people living with that condition. Evidence shows that people with diabetes are twice as likely to experience depression, and that they experience it more frequently and for longer than the general population. Research suggests that about half of all people with multiple sclerosis will experience depression at some point in their life, and almost half of people with arthritis say that the pain often or always makes them feel down or depressed.
A 2022 survey by Kidney Research UK showed that of the more than 1,000 people who responded, 67% had experienced symptoms of depression, 27% had considered self-harm, and so on. It is not only quality of life that is hugely affected; the economic impact of this issue is vast in reducing people’s ability to work and in increasing health and social care costs.
That puts the issue in context. I want to quote a number of the organisations concerned. As I said at the beginning, I want hon. Members to listen to what people are telling us, rather than what I think they are telling us. That is important. It is the case that 153,000 people are living with Parkinson’s disease in the UK. That is often thought of as predominantly a movement disorder. However, between 50% and 60% of sufferers experience psychosis and 40% have depression. That is according to Parkinson’s UK. It says that those
“who experience anxiety and depression found communication barriers between”
health
“departments, difficulties accessing patient notes, and a shortage of mental health professionals with the knowledge and skills”
to meet their specific needs.
Impact on Urban Health talks about 15 million people in the UK having one long-term condition and about 3 million living with three or more. It says:
“Poor physical health is inextricably linked with poor mental health, and both can be exacerbated by social context, or in other words where and how we live.”
The British Psychological Society says:
“There is a growing evidence base demonstrating the benefits of developing the psychological workforce within physical health care service provision to support earlier intervention, interdisciplinary programmes of care, and a focus on health distress and psychological adjustment as part of rehabilitation and recovery.”
The Cystic Fibrosis Trust says that, in regard to out- patient care,
“the paediatric CF service specifications say ‘there should be access to psycho-social support’ and the adult CF service specifications say ‘there will be access to psycho-social support.’”
Its ask is this:
“Everyone with CF must have access to a CF social worker and clinical psychologist, as and when needed, and not just at their annual review, as NHS service specifications state.”
The Cystic Fibrosis Trust indicates that this is not something that just comes and goes; it is there all the time for many people.
The Royal College of Psychiatrists talks about how having a physical illness can also have a negative effect on how someone thinks and feels. There are impacts in relation to stress, the sense of self, relationships, and understanding of the world. It says:
“Research has shown a link between mental illnesses and certain physical illnesses”
such as cancer, diabetes, asthma, high blood pressure and epilepsy.
Marie Curie says:
“While parity of esteem between mental and physical health is enshrined in law it is not yet being realised. There is limited access to mental health support, insufficient training for health and social care professionals and poor integration of palliative care and mental health care. The Government must centre integrated mental and physical health care within their plans for improving health care.”
The Versus Arthritis organisation says that depression is four times more common among those with chronic pain than those without pain—I do not think that is surprising—20% of people living with osteoarthritis experience symptoms of depression and anxiety, and 33% of people living with rheumatoid arthritis have mental health problems such as depression or anxiety. It says:
“Stress is also a significant factor for people living with arthritis.”
One of its service users, Richard, said:
“I didn’t appreciate just how big an impact my arthritis had on my mental health until I became pain-free. The pain took up so much of my headspace without me realising it. Living in constant pain is incredibly draining because it’s always there, which makes it difficult to enjoy everyday moments.”
Genetic Alliance UK, which colleagues have an interest in, talks about rare conditions that are
“individually rare but collectively common”,
with more than 3.5 million people in the UK living with a rare condition. It says:
“Rare conditions can be life-limiting and life-threatening. Due to their rarity, services are significantly underdeveloped to support people affected by them.”
It also says:
“Almost half of people living with rare conditions and their carers have never been asked about their mental health…and families report being denied access to mental health services due to the complexity of their needs associated with having a rare genetic condition.”
Its solution is:
“It is necessary to urgently improve awareness of rare conditions among healthcare professionals and social care services.”
The diabetes charity Juvenile Diabetes Research Foundation talks about coping strategies:
“Seeking support from healthcare professionals, including doctors, nurses, diabetes educators, psychologists, and social workers, is crucial in developing effective coping mechanisms tailored to individual needs.”
Kidney Care states:
“Addressing the mental health and social needs of kidney patients requires a multi-layered approach combining clinical, community, and policy initiatives. Implementing our recommended strategies will lead to improvements in the overall wellbeing and quality of life for people living with kidney disease while reducing the burden on the NHS.”
I have often heard the word “burden”, but I do not think it is a question of being a burden; it is a question of people’s right to have care, as and when they need it—I never see that as a burden. Kidney Care went on:
“We cannot let the repeated absence of appropriate mental health and social support continue. Now is the time for us to act to ensure that people living with kidney disease get the help they need.”
Kidney Research UK states:
“Having a long-term condition dramatically increases a person’s risk of mental ill health…Having poor mental health as well as a long-term condition leads to worse outcomes for a person’s physical health.”
A thread runs through every single one of these narratives.
According to Dementia UK:
“70,800 people in the UK are estimated to have young onset dementia, when symptoms develop before the age of 65. Yet people affected by young onset dementia remain a hidden population with unmet health care needs.”
It recommends:
“The Government must mandate every”
integrated care system
“to develop a young onset dementia pathway—putting those of working age with dementia at its heart. This includes providing a timely and accurate diagnosis, immediate post-diagnostic support and a co-ordinated care plan”,
because the impact on people’s and families’ mental health also has to be taken into account.
Moving on, Scope wrote that
“we have been extremely concerned about the recent proposals from the DWP following the Prime Minister’s ‘sicknote culture’ which heavily focused on people with mental health conditions. These proposals look to make the benefit system even more hostile, with it becoming more difficult for disabled people to claim the amount they need”.
Basically, that puts more and more stress on people. Scope describes a benefits system that is “dehumanising, stressful and complex”, which impacts on people’s mental health.
Crohn’s and Colitis UK talks about people with inflammatory bowel disease, who are
“twice as likely to experience mental health problems.”
Mental health can be affected in different ways, but the organisation adds:
“Despite the clear impact, most people with Crohn’s or Colitis don’t have access to psychological support…as part of the IBD specialist team.”
Again, that theme runs right through.
The MS Society briefed on mental health and multiple sclerosis:
“People with MS are likely to experience mental ill-health. A survey of the MS community carried out in MS Awareness Week in April 2024 found that nearly half…of respondents experienced mental health difficulties as a symptom of their MS.”
It recommends that the Government
“develop and implement a neurological conditions Talking Therapies pathway”
and
“a training package for the neurological workforce on mental health awareness.”
Kidney Research UK says:
“There are an estimated 7.2 million people living with kidney disease”
in the United Kingdom. It wants the adoption of
“a tailored approach to mental health care through a stepped model that becomes more specialised as needs increase”.
It also wants increased Government funding
“for research into the relationship between kidney disease and mental health to enable the ongoing development of essential services.”
The Royal College of Nursing also wrote to me. It talked about parity of esteem:
“Our members have previously suggested that there is risk in over-emphasising the need for ‘more counselling and brief talking therapy’ without parallel and sufficient investment in services that can help ensure parity”.
I am coming to a conclusion. The King’s Fund talked about a “360-degree review” that looks at prevalence, access, workforce, funding, costs, quality of patient experience, acute mental healthcare for adults, services for children and young people, inequalities, and data. I understand that the Local Government Association has already put its submission on the major conditions strategy in to the Government, but it is sure to talk about taking a whole-systems, assets-based approach.
I have done a Cook’s tour of what organisations have said. There is much more, and I am more than happy to send the documents I have to the Minister so that she or her staff can read them to get a feel for what organisations are saying.
Finally, I thank the House of Commons Library for its briefing, which basically says that people with serious mental illness
“in England die on average 15 to 20 years earlier than the general population. Major causes of death in people with SMI include long-term physical health conditions including diabetes, hypertension, respiratory and cardiovascular disease.”
The thread I talked about runs through every one of the submissions I have read out, and I am sure the Minister has listened to all that I have said. More importantly, I have repeated and put out to hon. Members what all those organisations have said—it is not what I say, but what they say—and I hope she will listen carefully to it.
14:17:51
Liz Twist
Blaydon
It is a pleasure to serve under you, Sir Robert. I thank my hon. Friend the Member for Bootle (Peter Dowd) for securing this incredibly important debate. Dealing with long-term health conditions can create a significant mental health burden both for the individuals with those conditions and for those who love and care for them. I see that regularly as a constituency MP, as well as in my work as the chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions.
According to the Royal College of Psychiatrists, people with physical health problems are two to three times more likely to have depression than people with good physical health. Conversely, people with severe mental illness in England are almost five times more likely to experience poor health and to die prematurely, as we heard from my hon. Friend, than those who do not have severe mental illnesses, and that mortality gap is widening.
We face a really difficult cycle, but we could be doing things to make life easier for people. As we have heard, that applies to people with a whole range of conditions, all of whom have specific needs. To name a few examples, I think of people with diabetes and their experiences of diabetes distress, which can look like a major depressive disorder but are often closely linked to glycaemic management and self-care. I think of people with Parkinson’s, who we have also heard about, nearly half of whom have experienced anxiety and depression, which are often triggered by the stress of receiving a diagnosis, as well as by the physical changes in the brain caused by the condition itself.
However, today I will focus on the difficulties endured by those with rare conditions, which can be acute. While such conditions are individually rare, they are collectively common, affecting over 3.5 million people in the UK, or one in 17 people—and my hon. Friend mentioned one of the organisations involved, the Cystic Fibrosis Trust. Talking about rare diseases across the board, a significant proportion are particularly devastating, with more than three out of 10 children affected dying before their fifth birthday.
We should be doing everything we can to make the lives of people with rare diseases easier. Instead, research from Genetic Alliance UK found that many families describe their experience of accessing care and support as a “battle”, “struggle” or “fight”. Those experiences reflect a number of challenges, including a lack of clinician awareness, long delays in diagnosis, widespread lack of licensed medicinal products to treat conditions, and difficulties accessing services such as education, employment, housing and social care, as well as financial support.
For those without a diagnosis, the challenges are particularly profound. It means isolation from community support, difficulties filling in paperwork to access services, and often no prognosis, meaning that individuals and their families have little to no idea how their condition will progress or even whether it will be life-limiting. The situation families live with is complex, unique and often extreme in terms of the stress endured. As one parent put it,
“you end up fighting battles you didn’t even know existed.”
Dealing with all those challenges—let alone the condition itself—can lead to stress, exhaustion and even suicidal thoughts. Further research from Genetic Alliance UK found that 70% of adults affected by rare conditions and their care givers have described themselves as being “at breaking point”, with more than 90% reporting anxiety, stress and low mood. Despite that, 75% of respondents to the 2023 Rareminds survey said they have never had a healthcare professional offer them support, or even signpost them to support, for their mental health. It is undeniable that, as things stand, we are letting families down.
We must urgently take steps to improve awareness of rare conditions among healthcare professionals and social care services. That includes providing the training and resources professionals need to support patients through their entire care journey, right from symptom presentation to diagnosis, treatment and management of the condition. We need those professionals to be familiar with the challenges of living with a rare disease and to handle discussions about mental health sensitively. Patients should be able to access assessment of mental health needs and mental health services on a routine and regular basis.
Turning to the UK rare diseases framework, England’s rare diseases action plan 2023 looked at mental health after it was highlighted in feedback on the 2022 action plan. Actions in the plan to address the mental health issues this community faces include requiring all new and revised service specifications for patients with rare diseases to consider users’ psychosocial needs and to ensure that there are co-ordinated pathways for access to mental health support. Research should also be commissioned to provide the evidence needed to operationalise better co-ordination of care, specifying that this should include approaches that address integrating mental health support into rare disease clinical care—when I talk to people with rare diseases and their families, one thing they talk about is that strain of pulling everything together and having to make sure that they have co-ordinated care, which in itself puts a stress on them. Finally, there were provisions on the NHS workforce, training and education directorate looking at developing further educational contact.
However, there are still things that can be done. The Department of Health and Social Care hosted a workshop in 2023 to better understand the challenges faced by the families of children and young people with rare conditions when accessing mental health service. Now that we understand the needs of the community, we need to see those priorities materialise into tangible change. The current UK rare diseases framework runs out in January 2025, so it is time to plan ahead. We must look ahead and take steps to build on the progress that has been made so far.
Although I am making the case for rare diseases and rare conditions, we need to see the same co-ordination and planning right across the board, and a recognition of the impact of mental health on people with long-term conditions. There is no one-size-fits-all solution for people with long-term conditions; the most important thing is for them to have access to a clinician who understands their needs. Help should not have to wait for a person to be diagnosed with a mental health problem. It is easier to protect and maintain mental wellbeing than to restore it after it has been eroded.
With our mental health system so very stretched, it has been difficult for patients to access even the most basic support. Looking more widely, there are currently more child and adolescent mental health services referrals than there have ever been, with nearly half a million young people in the system. Despite this record level of demand, it remains the case that around two thirds of children considered to have a diagnosable mental health condition have no contact with the NHS.
We therefore need a firm commitment, a detailed action plan and workforce plans from the Government to tackle the mental health crisis, with an opportunity for proper parliamentary accountability so that we can assess progress. It is particularly vital that we provide better support within the community for all those with long-term conditions, and I am pleased that the Labour party has set out its plans to achieve that. I hope the Government can deliver on this issue and take firm action to support those with long-term conditions.
Getting our mental health services back on their feet will play a vital role in tackling the vicious cycle of poor mental health on the one hand and poor physical health on the other. With proper parity of esteem and a holistic person-centred approach to care across our health system, I believe that we can make the most challenging aspects of people’s lives easier for them as they live with long-term conditions.
According to the Royal College of Psychiatrists, people with physical health problems are two to three times more likely to have depression than people with good physical health. Conversely, people with severe mental illness in England are almost five times more likely to experience poor health and to die prematurely, as we heard from my hon. Friend, than those who do not have severe mental illnesses, and that mortality gap is widening.
We face a really difficult cycle, but we could be doing things to make life easier for people. As we have heard, that applies to people with a whole range of conditions, all of whom have specific needs. To name a few examples, I think of people with diabetes and their experiences of diabetes distress, which can look like a major depressive disorder but are often closely linked to glycaemic management and self-care. I think of people with Parkinson’s, who we have also heard about, nearly half of whom have experienced anxiety and depression, which are often triggered by the stress of receiving a diagnosis, as well as by the physical changes in the brain caused by the condition itself.
However, today I will focus on the difficulties endured by those with rare conditions, which can be acute. While such conditions are individually rare, they are collectively common, affecting over 3.5 million people in the UK, or one in 17 people—and my hon. Friend mentioned one of the organisations involved, the Cystic Fibrosis Trust. Talking about rare diseases across the board, a significant proportion are particularly devastating, with more than three out of 10 children affected dying before their fifth birthday.
We should be doing everything we can to make the lives of people with rare diseases easier. Instead, research from Genetic Alliance UK found that many families describe their experience of accessing care and support as a “battle”, “struggle” or “fight”. Those experiences reflect a number of challenges, including a lack of clinician awareness, long delays in diagnosis, widespread lack of licensed medicinal products to treat conditions, and difficulties accessing services such as education, employment, housing and social care, as well as financial support.
For those without a diagnosis, the challenges are particularly profound. It means isolation from community support, difficulties filling in paperwork to access services, and often no prognosis, meaning that individuals and their families have little to no idea how their condition will progress or even whether it will be life-limiting. The situation families live with is complex, unique and often extreme in terms of the stress endured. As one parent put it,
“you end up fighting battles you didn’t even know existed.”
Dealing with all those challenges—let alone the condition itself—can lead to stress, exhaustion and even suicidal thoughts. Further research from Genetic Alliance UK found that 70% of adults affected by rare conditions and their care givers have described themselves as being “at breaking point”, with more than 90% reporting anxiety, stress and low mood. Despite that, 75% of respondents to the 2023 Rareminds survey said they have never had a healthcare professional offer them support, or even signpost them to support, for their mental health. It is undeniable that, as things stand, we are letting families down.
We must urgently take steps to improve awareness of rare conditions among healthcare professionals and social care services. That includes providing the training and resources professionals need to support patients through their entire care journey, right from symptom presentation to diagnosis, treatment and management of the condition. We need those professionals to be familiar with the challenges of living with a rare disease and to handle discussions about mental health sensitively. Patients should be able to access assessment of mental health needs and mental health services on a routine and regular basis.
Turning to the UK rare diseases framework, England’s rare diseases action plan 2023 looked at mental health after it was highlighted in feedback on the 2022 action plan. Actions in the plan to address the mental health issues this community faces include requiring all new and revised service specifications for patients with rare diseases to consider users’ psychosocial needs and to ensure that there are co-ordinated pathways for access to mental health support. Research should also be commissioned to provide the evidence needed to operationalise better co-ordination of care, specifying that this should include approaches that address integrating mental health support into rare disease clinical care—when I talk to people with rare diseases and their families, one thing they talk about is that strain of pulling everything together and having to make sure that they have co-ordinated care, which in itself puts a stress on them. Finally, there were provisions on the NHS workforce, training and education directorate looking at developing further educational contact.
However, there are still things that can be done. The Department of Health and Social Care hosted a workshop in 2023 to better understand the challenges faced by the families of children and young people with rare conditions when accessing mental health service. Now that we understand the needs of the community, we need to see those priorities materialise into tangible change. The current UK rare diseases framework runs out in January 2025, so it is time to plan ahead. We must look ahead and take steps to build on the progress that has been made so far.
Although I am making the case for rare diseases and rare conditions, we need to see the same co-ordination and planning right across the board, and a recognition of the impact of mental health on people with long-term conditions. There is no one-size-fits-all solution for people with long-term conditions; the most important thing is for them to have access to a clinician who understands their needs. Help should not have to wait for a person to be diagnosed with a mental health problem. It is easier to protect and maintain mental wellbeing than to restore it after it has been eroded.
With our mental health system so very stretched, it has been difficult for patients to access even the most basic support. Looking more widely, there are currently more child and adolescent mental health services referrals than there have ever been, with nearly half a million young people in the system. Despite this record level of demand, it remains the case that around two thirds of children considered to have a diagnosable mental health condition have no contact with the NHS.
We therefore need a firm commitment, a detailed action plan and workforce plans from the Government to tackle the mental health crisis, with an opportunity for proper parliamentary accountability so that we can assess progress. It is particularly vital that we provide better support within the community for all those with long-term conditions, and I am pleased that the Labour party has set out its plans to achieve that. I hope the Government can deliver on this issue and take firm action to support those with long-term conditions.
Getting our mental health services back on their feet will play a vital role in tackling the vicious cycle of poor mental health on the one hand and poor physical health on the other. With proper parity of esteem and a holistic person-centred approach to care across our health system, I believe that we can make the most challenging aspects of people’s lives easier for them as they live with long-term conditions.
14:28:21
Mr Khalid Mahmood
Birmingham, Perry Barr
It is a privilege to be under your guidance, Sir Robert. I thank my hon. Friend the Member for Bootle (Peter Dowd) for securing this debate on a very important issue.
I declare an interest: I suffered from kidney failure and was very fortunate to get a transplant. A very good friend of mine gave me his kidney as a live donor, which is extremely rare; most patients are not that lucky. The problem with the donor card system for organ donations is that it depends on the next of kin. If the next of kin does not abide by the deceased’s decision, no organs can be taken. There is still a real issue to address there.
Transplants change your life. I went through dialysis for almost four and a half years, but I was then fortunate enough to get a transplant from a very good friend who used to be in this place and was then in the European Parliament. He is now living in north Wales, having a fantastic time, and is doing some consultancy as well. It was Siôn Simon, who is still a very good friend and a great person; I pay tribute to his courage. More people should do as he did, because unless we have other issues, a lot of us can survive on one kidney. He is certainly a great example of that.
Kidney failure is very sudden—you do not realise until it is upon you—but it can be avoided by some simple tests. A simple urine test at the GP or in hospital can give an analysis of someone’s kidney function so that hopefully they can take preventive action to make sure that they do not lose a kidney. People can also go for blood tests. Those are very easy preventive measures that can save someone’s physical health.
Just as important is mental health. Once someone is a kidney patient, they have to seek dialysis of some sort —peritoneal dialysis or haemodialysis. I had haemodialysis, which is done through a machine that circulates the blood. Peritoneal dialysis, which can be done at night, circulates the impurities out of the system using a fluid bag and an exit bag. One of the main problems when people get such a difficult health condition is that they think, “Why me? What have I done to deserve this?” My experience, unfortunately, is that people in the dialysis unit can find it very difficult to come to terms with from a mental health perspective and to justify why it is happening to them.
When someone goes on dialysis, they have four-hour sessions at least three times a week. It reduces their blood pressure significantly. Having fluids in their system is one of the last things they should do: they should drink as little water as they possibly can, because it will be extracted through the process. When their blood pressure drops, it causes a huge physical issue. Their heart rate increases and they can pass out: I did so a couple of times and was very grateful to the people at the unit who acted very swiftly to support me. I pay great tribute to all the medical staff—the doctors, the consultants, and particularly the nurses—in the renal units, who do a fantastic job to support us all.
During that period, I saw a number of people going through real mental health struggles in coming to terms with turning up to a unit every week and knowing that they would be there for four hours. Getting there, getting ready, coming off and being picked up or taking their own transport can take at least six hours of their day. It is a huge amount of time, and they are stuck in that cycle.
One thing people can do, and which I resorted to in the end, is home dialysis: I was able to dialyse myself, with support, at home. That made it slightly easier, but it is a hugely debilitating condition. A number of people have really difficult mental health problems in coming to terms with this debilitating disease. There are lots of questions. A friend’s son who was there with me, and was a lot younger than me, unfortunately passed, and I have seen other people who passed because of this. Part of that is to do with staying strong mentally. When there is no support for that, it becomes increasingly difficult.
My hon. Friend the Member for Bootle raised the important issue of how diabetes and other long-term illnesses can put someone’s mental health quite severely at risk. The longer it goes on, the more it becomes a huge risk. I thank my hon. Friend for securing this debate and giving me the opportunity to say this.
In 2022, a Kidney Research UK survey found that 67% of patients with kidney disease had experienced symptoms of depression, 27% had considered self-harm or suicide, 36% could not fully look after their physical health because of their mental health problems, and 68% had not been offered any mental health support despite their precarious position. That is how difficult it is for people to make their way through. It is very important that mental health issues be addressed.
In 2023, Kidney Research UK and the Centre for Mental Health published a joint report, “Addressing the mental health challenges of life with kidney disease: the case for change”. They made a number of recommendations, including the adoption of a tailored approach to mental health that becomes more specialised as the need increases. The need increases because patients’ physical health deteriorates, and it becomes extremely difficult to do some of those things that are normal for all of us.
The report also recommended the recruitment of renal psychologists for every renal centre in the UK. We do not have that facility, so even if it is picked up in a renal unit that a patient is having these issues, they have nowhere to go. All that can be done is for the patient to be signposted to the main central mental health facilities, which are very difficult to engage with. As it all increases, the patient’s own health position gets worse. That is why it is very important to have psychologists in every renal health centre in the UK.
Another recommendation was:
“Investment into all renal services to ensure that staff are trained and supported to assess and refer patients for further mental health help.”
Once they can do that, they can put patients on a pathway to resolving most of these issues. A further recommendation was:
“Increased government funding for research into the relationship between kidney disease and mental health to enable the ongoing development of essential services.”
When someone has a medical condition and, on top of that, mental health issues brought about by the severity of their condition, it causes a huge amount of problems.
I thank my hon. Friend the Member for Bootle again for making his case and giving me the opportunity to speak. This is a really important issue for those who cannot have a transplant and are still suffering from kidney disease: they are having to choose dialysis and then deal with it for most of their life. It is very difficult for them.
I declare an interest: I suffered from kidney failure and was very fortunate to get a transplant. A very good friend of mine gave me his kidney as a live donor, which is extremely rare; most patients are not that lucky. The problem with the donor card system for organ donations is that it depends on the next of kin. If the next of kin does not abide by the deceased’s decision, no organs can be taken. There is still a real issue to address there.
Transplants change your life. I went through dialysis for almost four and a half years, but I was then fortunate enough to get a transplant from a very good friend who used to be in this place and was then in the European Parliament. He is now living in north Wales, having a fantastic time, and is doing some consultancy as well. It was Siôn Simon, who is still a very good friend and a great person; I pay tribute to his courage. More people should do as he did, because unless we have other issues, a lot of us can survive on one kidney. He is certainly a great example of that.
Kidney failure is very sudden—you do not realise until it is upon you—but it can be avoided by some simple tests. A simple urine test at the GP or in hospital can give an analysis of someone’s kidney function so that hopefully they can take preventive action to make sure that they do not lose a kidney. People can also go for blood tests. Those are very easy preventive measures that can save someone’s physical health.
Just as important is mental health. Once someone is a kidney patient, they have to seek dialysis of some sort —peritoneal dialysis or haemodialysis. I had haemodialysis, which is done through a machine that circulates the blood. Peritoneal dialysis, which can be done at night, circulates the impurities out of the system using a fluid bag and an exit bag. One of the main problems when people get such a difficult health condition is that they think, “Why me? What have I done to deserve this?” My experience, unfortunately, is that people in the dialysis unit can find it very difficult to come to terms with from a mental health perspective and to justify why it is happening to them.
When someone goes on dialysis, they have four-hour sessions at least three times a week. It reduces their blood pressure significantly. Having fluids in their system is one of the last things they should do: they should drink as little water as they possibly can, because it will be extracted through the process. When their blood pressure drops, it causes a huge physical issue. Their heart rate increases and they can pass out: I did so a couple of times and was very grateful to the people at the unit who acted very swiftly to support me. I pay great tribute to all the medical staff—the doctors, the consultants, and particularly the nurses—in the renal units, who do a fantastic job to support us all.
During that period, I saw a number of people going through real mental health struggles in coming to terms with turning up to a unit every week and knowing that they would be there for four hours. Getting there, getting ready, coming off and being picked up or taking their own transport can take at least six hours of their day. It is a huge amount of time, and they are stuck in that cycle.
One thing people can do, and which I resorted to in the end, is home dialysis: I was able to dialyse myself, with support, at home. That made it slightly easier, but it is a hugely debilitating condition. A number of people have really difficult mental health problems in coming to terms with this debilitating disease. There are lots of questions. A friend’s son who was there with me, and was a lot younger than me, unfortunately passed, and I have seen other people who passed because of this. Part of that is to do with staying strong mentally. When there is no support for that, it becomes increasingly difficult.
My hon. Friend the Member for Bootle raised the important issue of how diabetes and other long-term illnesses can put someone’s mental health quite severely at risk. The longer it goes on, the more it becomes a huge risk. I thank my hon. Friend for securing this debate and giving me the opportunity to say this.
In 2022, a Kidney Research UK survey found that 67% of patients with kidney disease had experienced symptoms of depression, 27% had considered self-harm or suicide, 36% could not fully look after their physical health because of their mental health problems, and 68% had not been offered any mental health support despite their precarious position. That is how difficult it is for people to make their way through. It is very important that mental health issues be addressed.
In 2023, Kidney Research UK and the Centre for Mental Health published a joint report, “Addressing the mental health challenges of life with kidney disease: the case for change”. They made a number of recommendations, including the adoption of a tailored approach to mental health that becomes more specialised as the need increases. The need increases because patients’ physical health deteriorates, and it becomes extremely difficult to do some of those things that are normal for all of us.
The report also recommended the recruitment of renal psychologists for every renal centre in the UK. We do not have that facility, so even if it is picked up in a renal unit that a patient is having these issues, they have nowhere to go. All that can be done is for the patient to be signposted to the main central mental health facilities, which are very difficult to engage with. As it all increases, the patient’s own health position gets worse. That is why it is very important to have psychologists in every renal health centre in the UK.
Another recommendation was:
“Investment into all renal services to ensure that staff are trained and supported to assess and refer patients for further mental health help.”
Once they can do that, they can put patients on a pathway to resolving most of these issues. A further recommendation was:
“Increased government funding for research into the relationship between kidney disease and mental health to enable the ongoing development of essential services.”
When someone has a medical condition and, on top of that, mental health issues brought about by the severity of their condition, it causes a huge amount of problems.
I thank my hon. Friend the Member for Bootle again for making his case and giving me the opportunity to speak. This is a really important issue for those who cannot have a transplant and are still suffering from kidney disease: they are having to choose dialysis and then deal with it for most of their life. It is very difficult for them.
14:46:10
Abena Oppong-Asare
Erith and Thamesmead
It is a pleasure to see you in the Chair, Sir Robert. I thank my hon. Friend the Member for Bootle (Peter Dowd) for securing this important debate. I know that this is a topic very close to his heart, particularly as he is an officer of the all-party parliamentary health group. He recently gave a keynote speech about mental health and wellbeing for the NHS and social care for Westminster Insight. Today he has highlighted a number of important issues and concerns regarding mental health and long- term conditions. I am pleased to respond on behalf of the Opposition.
My hon. Friend raised many of his points in the words of organisations that have done a lot of work and research into how long-term conditions impact individuals. I was particularly touched by how he talked about the impact of limited access to mental health support and poor palliative healthcare. He said that he did a Cook’s tour of what all the organisations have said, and I hope the Minister takes the words of those organisations on board.
I thank my hon. Friends the Members for Blaydon (Liz Twist) and for Birmingham, Perry Barr (Mr Mahmood) for their contributions. My hon. Friend the Member for Blaydon, who chairs the all-party parliamentary group on rare, genetic and undiagnosed conditions, talked about how different conditions have impacted people. If improvements could be made in conditions like diabetes and Parkinson’s, people’s mental health could improve. She focused on the difficulties facing those with rare conditions and highlighted the powerful statistic that 3.5 million people—one in 17—are impacted. She talked about a parent who said that you end up fighting battles that you did not really know existed.
I thank my hon. Friend the Member for Birmingham, Perry Barr for sharing his personal experience. He talked about issues relating to transplants and about how his transplant has changed his life, as well as the impact on the mental health of patients who go through dialysis. He also talked about how 67% of kidney patients experience depression and 68% are not offered any mental health support.
It is fitting that we are addressing this crucial topic in Mental Health Awareness Week. I pay tribute to all the fantastic mental health charities that are fighting the fight and leading the way across the UK. They include the Mental Health Foundation, Mind, Centre for Mental Health, Rethink Mental Illness, the Samaritans, YoungMinds and many more. Alongside those brilliant charities, this week we have observed schools, universities, businesses, community groups and many other organisations coming together, including here in Parliament, to raise awareness of the importance of our mental health and combatting the lingering stigma that remains in our society. I put on the record my thanks to the House of Commons Library for its research in the area.
In recent years, talking about mental health has finally stepped out of the shadows, and we are better off as a result. However, while we celebrate the progress that has been made, we cannot overlook the scale of the challenges that we face. Sadly, I have to say that after 14 years in office, this Government have failed to deliver the mental health services that our country desperately needs and deserves. It has never been as bad as it is today: I hear that time and again from the patients, families and NHS frontline staff who I have been fortunate to meet since I was appointed to this role.
The statistics on the crisis are clear. More than 1.9 million people are waiting for mental health treatment. Almost 1 million children and young people in England were referred to mental health services last year, and more than 33,000 children and young people are still waiting, after two years, for a first contact from community mental health services. A recent report by Centre for Mental Health estimated that the crisis is costing us £300 billion a year, which is twice as big as NHS England’s annual budget.
Suicide is the biggest killer in this country. The rates are the same as they were 20 years ago, and they are rising. When it comes to those with long-term physical and mental health conditions, we must be particularly concerned. Far too many people are leaving the labour market, and many are no longer able to work. Work is good for mental health and can bring pride, fulfilment and purpose, yet the number of people out of work because of long-term sickness is at a staggering all-time high of 2.8 million. The reality is that this crisis has occurred under successive Tory Governments. Britain has become unwell, with millions languishing on waiting lists and far too many living in conditions of poverty, poor housing and financial insecurity that worsen their mental health.
We cannot stand by as the crisis continues, which is why we need to address the challenges together. As has been mentioned, we need to work across Departments in Whitehall and oh so directly at the heart of our communities. A Labour Government will do that by injecting resources and reforming NHS mental health services. We cannot just turn around at the shocking figures that my colleagues have produced in this debate; we have to completely overhaul the way that our country approaches mental health. For example, we need a prevention-based approach, where people can access mental health support in the community when they first need it, rather than wait until they reach crisis point. Prevention is not only socially just but economically efficient, as my hon. Friend the Member for Bootle mentioned. It saves lives and it saves money.
Labour will give the NHS the staff it needs by recruiting 8,500 more mental health specialists to cut waiting lists and waiting times. We will also provide mental health support in every school and an open-access mental health hub for children and young people in every community. Those plans will be fully paid for by abolishing tax loopholes for private equity managers and ending tax breaks for private schools.
We cannot discuss the topic of mental health without talking about the long-awaited reform of the Mental Health Act 1983. Labour has committed to include reform of the Act in our first King’s Speech. The Tories promised those reforms in their 2017 and 2019 manifestos, but have failed time and time again to deliver. The treatment of people with autism and learning disabilities under this outdated legislation disgraces our society, and the way in which black people are disproportionately impacted is indefensible. This law is not fit for purpose and needs to change. If elected, Labour will change it.
I thank my hon. Friend the Member for Bootle for bringing forward the debate. I also want to make it clear how inspiring it has been to witness the widespread and positive contribution of this year’s Mental Health Awareness Week, this week. There is a clear yearning from the public, especially our young people, to end the stigma and treat mental health with the same urgency as physical health. We must transform that pressure into action.
My hon. Friend raised many of his points in the words of organisations that have done a lot of work and research into how long-term conditions impact individuals. I was particularly touched by how he talked about the impact of limited access to mental health support and poor palliative healthcare. He said that he did a Cook’s tour of what all the organisations have said, and I hope the Minister takes the words of those organisations on board.
I thank my hon. Friends the Members for Blaydon (Liz Twist) and for Birmingham, Perry Barr (Mr Mahmood) for their contributions. My hon. Friend the Member for Blaydon, who chairs the all-party parliamentary group on rare, genetic and undiagnosed conditions, talked about how different conditions have impacted people. If improvements could be made in conditions like diabetes and Parkinson’s, people’s mental health could improve. She focused on the difficulties facing those with rare conditions and highlighted the powerful statistic that 3.5 million people—one in 17—are impacted. She talked about a parent who said that you end up fighting battles that you did not really know existed.
I thank my hon. Friend the Member for Birmingham, Perry Barr for sharing his personal experience. He talked about issues relating to transplants and about how his transplant has changed his life, as well as the impact on the mental health of patients who go through dialysis. He also talked about how 67% of kidney patients experience depression and 68% are not offered any mental health support.
It is fitting that we are addressing this crucial topic in Mental Health Awareness Week. I pay tribute to all the fantastic mental health charities that are fighting the fight and leading the way across the UK. They include the Mental Health Foundation, Mind, Centre for Mental Health, Rethink Mental Illness, the Samaritans, YoungMinds and many more. Alongside those brilliant charities, this week we have observed schools, universities, businesses, community groups and many other organisations coming together, including here in Parliament, to raise awareness of the importance of our mental health and combatting the lingering stigma that remains in our society. I put on the record my thanks to the House of Commons Library for its research in the area.
In recent years, talking about mental health has finally stepped out of the shadows, and we are better off as a result. However, while we celebrate the progress that has been made, we cannot overlook the scale of the challenges that we face. Sadly, I have to say that after 14 years in office, this Government have failed to deliver the mental health services that our country desperately needs and deserves. It has never been as bad as it is today: I hear that time and again from the patients, families and NHS frontline staff who I have been fortunate to meet since I was appointed to this role.
The statistics on the crisis are clear. More than 1.9 million people are waiting for mental health treatment. Almost 1 million children and young people in England were referred to mental health services last year, and more than 33,000 children and young people are still waiting, after two years, for a first contact from community mental health services. A recent report by Centre for Mental Health estimated that the crisis is costing us £300 billion a year, which is twice as big as NHS England’s annual budget.
Suicide is the biggest killer in this country. The rates are the same as they were 20 years ago, and they are rising. When it comes to those with long-term physical and mental health conditions, we must be particularly concerned. Far too many people are leaving the labour market, and many are no longer able to work. Work is good for mental health and can bring pride, fulfilment and purpose, yet the number of people out of work because of long-term sickness is at a staggering all-time high of 2.8 million. The reality is that this crisis has occurred under successive Tory Governments. Britain has become unwell, with millions languishing on waiting lists and far too many living in conditions of poverty, poor housing and financial insecurity that worsen their mental health.
We cannot stand by as the crisis continues, which is why we need to address the challenges together. As has been mentioned, we need to work across Departments in Whitehall and oh so directly at the heart of our communities. A Labour Government will do that by injecting resources and reforming NHS mental health services. We cannot just turn around at the shocking figures that my colleagues have produced in this debate; we have to completely overhaul the way that our country approaches mental health. For example, we need a prevention-based approach, where people can access mental health support in the community when they first need it, rather than wait until they reach crisis point. Prevention is not only socially just but economically efficient, as my hon. Friend the Member for Bootle mentioned. It saves lives and it saves money.
Labour will give the NHS the staff it needs by recruiting 8,500 more mental health specialists to cut waiting lists and waiting times. We will also provide mental health support in every school and an open-access mental health hub for children and young people in every community. Those plans will be fully paid for by abolishing tax loopholes for private equity managers and ending tax breaks for private schools.
We cannot discuss the topic of mental health without talking about the long-awaited reform of the Mental Health Act 1983. Labour has committed to include reform of the Act in our first King’s Speech. The Tories promised those reforms in their 2017 and 2019 manifestos, but have failed time and time again to deliver. The treatment of people with autism and learning disabilities under this outdated legislation disgraces our society, and the way in which black people are disproportionately impacted is indefensible. This law is not fit for purpose and needs to change. If elected, Labour will change it.
I thank my hon. Friend the Member for Bootle for bringing forward the debate. I also want to make it clear how inspiring it has been to witness the widespread and positive contribution of this year’s Mental Health Awareness Week, this week. There is a clear yearning from the public, especially our young people, to end the stigma and treat mental health with the same urgency as physical health. We must transform that pressure into action.
14:48:26
Maria Caulfield
The Parliamentary Under-Secretary of State for Health and Social Care
It is a pleasure to serve under your chairmanship, Sir Robert. I am grateful to the hon. Member for Bootle (Peter Dowd) for securing this debate about mental health for those with long-term conditions, especially during Mental Health Awareness Week.
I thank everyone who contributed, including the hon. Member for Blaydon (Liz Twist) who does great work on mental health with her all-party parliamentary group on suicide and self-harm prevention. If other hon. Members do not mind me saying so, the standout speech was from the hon. Member for Birmingham, Perry Barr (Mr Mahmood), who talked about his own experience of going through a long-term condition and needing dialysis for renal disease. He highlighted not only the physical impact but the effect on his mental health, and the uncertainty that organ donation and transplant can bring.
I know that this is a debate on mental health for those with long-term conditions, but I will touch on what the hon. Member for Birmingham, Perry Barr said about the opt-out system for organ donations in England, which we brought in in May 2020. I recognise that even when someone has consented themselves, there are still issues with families refusing organ donation. In February 2023, we committed to implement the recommendations of the Organ Utilisation Group, which highlighted issues relating to opt-out and to the use of donated organs—we must ensure they go forward for donation—so I absolutely recognise the hon. Gentleman’s comments.
I want to reassure hon. Members about our commitment to improving mental health and wellbeing, particularly for those with longer-term conditions. Over the past 14 years, the stigma surrounding mental health problems and mental illness has been removed. People are much more willing to talk about their mental health and discuss issues that they face; we are breaking down those barriers.
We have also made progress on parity of esteem between physical and mental health, and the funding that we have made available to mental health in the past few years is the most significant ever in England. That is not to say that it has met all the challenges we face, but through funding, infrastructure and staff recruitment we are getting mental and physical health on the same level.
When I spoke at the Mental Health Foundation event in Parliament yesterday, I said that our challenge now was to ensure that we do not just silo people into having a mental health problem or a physical health problem. The hon. Member for Birmingham, Perry Barr expressed that so well. We cannot just treat people in isolation; we know that people who suffer with mental illness have significantly poorer health outcomes for major conditions including cancer and heart disease, and likewise people with long-term conditions struggle with their mental health. That is why we put mental health in our major conditions strategy. We got some criticism when we announced that we would not have a stand-alone mental health strategy, but it was because people’s conditions cannot be treated in isolation: their physical and mental health must be treated together. That is why, in the major conditions strategy, mental health is one of the major conditions that we will focus on.
That is also why, through the NHS long-term plan, we have provided record levels of funding to increase our mental health workforce across England. Our target is 27,000 mental health workers and we are on track to meet it. Our NHS forecast shows that since 2019 our spending on mental health services has increased by £4.7 billion in cash terms, compared with our original target of £3.4 billion. We invest almost £16 billion in mental health, enabling 3.6 million people to access mental health services.
Significant investment and resources are going in, but I recognise that there has been a tsunami of demand and we are struggling even to tread water. We have had a 46% increase in the number of referrals across the United Kingdom, not just in England. In Wales they have had a similar experience: child mental health waits were up 14% in July 2023, compared with December 2022. Overall, in Wales there are 30,000 people on the waiting list who have been waiting for more than two years. The challenges that we face in England are exactly the same as those in Wales, and I think it would be more appropriate to take the politics out of this and deal with the causes.
I am really pleased that the types of mental health services we are investing in are not just for people with a mental illness. It is really important that we not only provide bespoke services for people with specific mental illnesses, but improve the mental health of the country overall. One of our biggest successes is the flagship NHS talking therapies programme, which is for adults everywhere across the country. It is accessible on our NHS website. People can access the Every Mind Matters website, and can self-refer. Anyone can access those services, including people with diabetes, Parkinson’s, cancer, MS or renal conditions. So far, more than 1.2 million people have done so in the past year—an 11% increase since the start of the long-term plan in 2019.
We are expanding those services further to help people with mental ill health and long-term conditions. Colleagues in the Department for Work and Pensions are working with people who are struggling to find work because of a long-term condition and the mental health effects that that has had.
We do recognise that two thirds of people with common mental health problems also have a long-term physical health problem. One of the key issues we do need to overcome—which was not mentioned in this debate—is that if someone has a mental illness they may also have cancer, diabetes or renal problems, and sometimes there is diagnostic overshadowing that assumes that it is someone’s mental health problems when they are complaining about pain or describing other symptoms. They are not taken as seriously as someone who does not have a mental illness. That diagnostic overshadowing is sometimes responsible for the poorer clinical outcomes. There is a piece of work to do, across the board, that is not just about providing services. It is about changing that culture so that people with mental illness and long-term conditions get the help that they need.
On the talking therapies point, all integrated care boards are expected to expand their services locally by commissioning NHS talking therapies into physical healthcare pathways. I know the hon. Member for Bootle talked specifically about some of the work on renal disease. NHS England has published a series of service specifications covering renal services, developed by specialist clinicians and commissioners and patients with experience, to set out expected standards for specialised renal care. That does include clinical psychologists, although I recognise that is not happening everywhere. There are regular review meetings between regional commissioners; I am very happy to follow those up with the hon. Gentleman, to update him on where there may perhaps be gaps in service provision. However there is a service specification that should include those services for renal conditions as well.
I will move on to talk about suicide prevention. We released our strategy fairly recently and we have put in it that people with a physical illness or a long-term condition are more at risk of suicide. That is why physical illness is now included as a key national risk factor for action in our five-year suicide prevention strategy. I am very happy to update Members about the progress we are making. There are 130 actions that we believe will address some of those common risk factors and make swift progress.
In terms of the support we are giving to people with long-term conditions and the ability to live better with a long-term condition, we are providing support across the board here as well. It is important that teams that are looking after people, whether with cancer or diabetes, are aware of the emotional and psychological support needed. It has historically been the case that these patients are often referred to the mental health team. That is not always what is needed. Some basic support can do a huge amount to improve the psychological wellbeing of patients.
Children were raised in the debate and I want to update the House on that because children have long-term conditions too. We are putting in significant support. Only a few weeks ago, we put forward funding for 24 early support hubs—support hubs for children who want to get mental health support. No referral is required. They are local, with services provided to suit the needs of the local community, and £8 million has gone towards the funding of those 24 projects. We are evaluating them to see whether they are making the difference we need them to make. We are also rolling out mental health support teams in schools to over 4 million children via 400 mental health support teams which are providing support to just under 50% of our schools. I think that is making a significant difference. If a child has a long-term condition in school, they will have within their school a team able to provide emotional and psychological support to them as appropriate.
I hope I have given a bit of a whistle-stop tour—although perhaps not a Cook’s tour, as the hon. Member for Bootle did. I absolutely share some of the concerns that hon. Members have raised in this Chamber, and I hope that I have highlighted that there is some exciting, groundbreaking work happening in this space.
In Mental Health Awareness Week, it is really important that we talk about mental health problems for people with long-term conditions and recognise how being unwell over a long period—whatever the cause—affects a person and their family. That is why it is so important that we have whole-person treatment and support to improve both the physical and mental wellbeing of individuals.
I thank everyone who contributed, including the hon. Member for Blaydon (Liz Twist) who does great work on mental health with her all-party parliamentary group on suicide and self-harm prevention. If other hon. Members do not mind me saying so, the standout speech was from the hon. Member for Birmingham, Perry Barr (Mr Mahmood), who talked about his own experience of going through a long-term condition and needing dialysis for renal disease. He highlighted not only the physical impact but the effect on his mental health, and the uncertainty that organ donation and transplant can bring.
I know that this is a debate on mental health for those with long-term conditions, but I will touch on what the hon. Member for Birmingham, Perry Barr said about the opt-out system for organ donations in England, which we brought in in May 2020. I recognise that even when someone has consented themselves, there are still issues with families refusing organ donation. In February 2023, we committed to implement the recommendations of the Organ Utilisation Group, which highlighted issues relating to opt-out and to the use of donated organs—we must ensure they go forward for donation—so I absolutely recognise the hon. Gentleman’s comments.
I want to reassure hon. Members about our commitment to improving mental health and wellbeing, particularly for those with longer-term conditions. Over the past 14 years, the stigma surrounding mental health problems and mental illness has been removed. People are much more willing to talk about their mental health and discuss issues that they face; we are breaking down those barriers.
We have also made progress on parity of esteem between physical and mental health, and the funding that we have made available to mental health in the past few years is the most significant ever in England. That is not to say that it has met all the challenges we face, but through funding, infrastructure and staff recruitment we are getting mental and physical health on the same level.
When I spoke at the Mental Health Foundation event in Parliament yesterday, I said that our challenge now was to ensure that we do not just silo people into having a mental health problem or a physical health problem. The hon. Member for Birmingham, Perry Barr expressed that so well. We cannot just treat people in isolation; we know that people who suffer with mental illness have significantly poorer health outcomes for major conditions including cancer and heart disease, and likewise people with long-term conditions struggle with their mental health. That is why we put mental health in our major conditions strategy. We got some criticism when we announced that we would not have a stand-alone mental health strategy, but it was because people’s conditions cannot be treated in isolation: their physical and mental health must be treated together. That is why, in the major conditions strategy, mental health is one of the major conditions that we will focus on.
That is also why, through the NHS long-term plan, we have provided record levels of funding to increase our mental health workforce across England. Our target is 27,000 mental health workers and we are on track to meet it. Our NHS forecast shows that since 2019 our spending on mental health services has increased by £4.7 billion in cash terms, compared with our original target of £3.4 billion. We invest almost £16 billion in mental health, enabling 3.6 million people to access mental health services.
Significant investment and resources are going in, but I recognise that there has been a tsunami of demand and we are struggling even to tread water. We have had a 46% increase in the number of referrals across the United Kingdom, not just in England. In Wales they have had a similar experience: child mental health waits were up 14% in July 2023, compared with December 2022. Overall, in Wales there are 30,000 people on the waiting list who have been waiting for more than two years. The challenges that we face in England are exactly the same as those in Wales, and I think it would be more appropriate to take the politics out of this and deal with the causes.
I am really pleased that the types of mental health services we are investing in are not just for people with a mental illness. It is really important that we not only provide bespoke services for people with specific mental illnesses, but improve the mental health of the country overall. One of our biggest successes is the flagship NHS talking therapies programme, which is for adults everywhere across the country. It is accessible on our NHS website. People can access the Every Mind Matters website, and can self-refer. Anyone can access those services, including people with diabetes, Parkinson’s, cancer, MS or renal conditions. So far, more than 1.2 million people have done so in the past year—an 11% increase since the start of the long-term plan in 2019.
We are expanding those services further to help people with mental ill health and long-term conditions. Colleagues in the Department for Work and Pensions are working with people who are struggling to find work because of a long-term condition and the mental health effects that that has had.
We do recognise that two thirds of people with common mental health problems also have a long-term physical health problem. One of the key issues we do need to overcome—which was not mentioned in this debate—is that if someone has a mental illness they may also have cancer, diabetes or renal problems, and sometimes there is diagnostic overshadowing that assumes that it is someone’s mental health problems when they are complaining about pain or describing other symptoms. They are not taken as seriously as someone who does not have a mental illness. That diagnostic overshadowing is sometimes responsible for the poorer clinical outcomes. There is a piece of work to do, across the board, that is not just about providing services. It is about changing that culture so that people with mental illness and long-term conditions get the help that they need.
On the talking therapies point, all integrated care boards are expected to expand their services locally by commissioning NHS talking therapies into physical healthcare pathways. I know the hon. Member for Bootle talked specifically about some of the work on renal disease. NHS England has published a series of service specifications covering renal services, developed by specialist clinicians and commissioners and patients with experience, to set out expected standards for specialised renal care. That does include clinical psychologists, although I recognise that is not happening everywhere. There are regular review meetings between regional commissioners; I am very happy to follow those up with the hon. Gentleman, to update him on where there may perhaps be gaps in service provision. However there is a service specification that should include those services for renal conditions as well.
I will move on to talk about suicide prevention. We released our strategy fairly recently and we have put in it that people with a physical illness or a long-term condition are more at risk of suicide. That is why physical illness is now included as a key national risk factor for action in our five-year suicide prevention strategy. I am very happy to update Members about the progress we are making. There are 130 actions that we believe will address some of those common risk factors and make swift progress.
In terms of the support we are giving to people with long-term conditions and the ability to live better with a long-term condition, we are providing support across the board here as well. It is important that teams that are looking after people, whether with cancer or diabetes, are aware of the emotional and psychological support needed. It has historically been the case that these patients are often referred to the mental health team. That is not always what is needed. Some basic support can do a huge amount to improve the psychological wellbeing of patients.
Children were raised in the debate and I want to update the House on that because children have long-term conditions too. We are putting in significant support. Only a few weeks ago, we put forward funding for 24 early support hubs—support hubs for children who want to get mental health support. No referral is required. They are local, with services provided to suit the needs of the local community, and £8 million has gone towards the funding of those 24 projects. We are evaluating them to see whether they are making the difference we need them to make. We are also rolling out mental health support teams in schools to over 4 million children via 400 mental health support teams which are providing support to just under 50% of our schools. I think that is making a significant difference. If a child has a long-term condition in school, they will have within their school a team able to provide emotional and psychological support to them as appropriate.
I hope I have given a bit of a whistle-stop tour—although perhaps not a Cook’s tour, as the hon. Member for Bootle did. I absolutely share some of the concerns that hon. Members have raised in this Chamber, and I hope that I have highlighted that there is some exciting, groundbreaking work happening in this space.
In Mental Health Awareness Week, it is really important that we talk about mental health problems for people with long-term conditions and recognise how being unwell over a long period—whatever the cause—affects a person and their family. That is why it is so important that we have whole-person treatment and support to improve both the physical and mental wellbeing of individuals.
15:00:21
Peter Dowd
First, thank you for your excellent stewardship of today’s event, Sir Robert. I thank my hon. Friend the Member for Blaydon (Liz Twist) and salute her commitment to the rare diseases field, which I know she works very hard on. I also thank my hon. Friend the Member for Birmingham, Perry Barr (Mr Mahmood) for his compelling articulation of his personal experience. I think that we would all like to thank him for that. I also thank my hon. Friend the Member for Erith and Thamesmead (Abena Oppong-Asare) for her response. And, of course, I thank the Minister for listening and responding. Finally, a big thanks to all of the organisations that I mentioned earlier.
Question put and agreed to.
Resolved,
That this House has considered mental health and long-term conditions.
Question put and agreed to.
Resolved,
That this House has considered mental health and long-term conditions.
Sitting adjourned.
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