Mental Health and Long-term Conditions

Liz Twist Excerpts

Thursday 16th May 2024 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

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.