Written evidence submitted by Kidney Research UK (CMH0078)

Kidney Research UK Response to Health and Social Care Committee Inquiry on Community Mental Health Services for People with Severe Mental Illness

Background on Kidney Research UK

Kidney Research UK is the UK’s leading kidney research charity.

An estimated 7.2 million people in the UK have kidney disease, and numbers are only expected to grow, particularly in underserved communities already experiencing health inequalities. This greatly impacts individuals, their families, the health system and the wider economy. Kidney disease is currently the tenth biggest killer worldwide and is projected to be the fifth-highest cause of premature mortality by 2040.

By 2033, the number of people with chronic kidney disease (CKD) stages 3-5 in the UK is projected to reach 3.9 million. This is driven by an ageing population, as well as risk factors such as diabetes, hypertension and cardiovascular disease, and other important contributors such as health and economic inequalities.

We are responding to this inquiry due to the relationship between kidney disease and poor mental health, including severe mental illness. Not everyone is equally impacted by kidney disease, and some people are more at risk of developing kidney disease. This includes people with severe mental illness.

As such, we are responding to a limited selection of questions and will respond specifically in the context of the relationship between kidney disease and severe mental illness.

We would welcome a meeting with the committee to discuss in more detail the relationship between kidney disease and severe mental illness, and the need for holistic care for people with severe mental illness to encompass appropriate renal care.

Response

Question: What does high-quality care look like for adults with severe mental illness and their families/carers?

People living with a diagnosis of severe mental illness die 10 to 20 years earlier than the general population—much of this mortality gap results from poor physical health. [i]Kidney disease is more prevalent among people with severe mental illness. [ii]

Some of the increased prevalence is accounted for by lithium treatment and higher rates of cardiovascular disease. [iii] In addition, people who are living with both kidney disease and severe mental illness have higher mortality rates and higher rates of hospitalisation than people who are living with kidney disease but not with severe mental illness. [iv]

The relationship between kidney disease and psychosocial health is complex. The National Psychosocial Working Group (2022a) [v] has outlined three forms it can take:

• Kidney disease can impact a person’s mental health.
• Pre-existing trauma or mental illness can lead indirectly to kidney failure.
• Co-existing mental illness, dementia or intellectual disabilities with kidney disease leads to poorer outcomes.

People with severe mental illness face difficulties accessing treatment for physical health problems. [vi] These difficulties can include the type of treatment they are, or are not, offered. For example, kidney patients with severe mental illness are less likely to receive a kidney transplant than those without severe mental illness, despite a lack of evidence of worse transplant outcomes. [vii]

The difficulties faced by people with severe mental illness also include the way in which treatments are offered. For example, renal units have been described as “task-orientated environments” and renal nurses – who are the first point of call for most difficulties – may lack resources, in terms of time, training and managerial support, to provide holistic care (even at the most basic level) to people with severe mental illness. [viii] In this context, patients who are unable to easily fit into the busy ward routine are at risk of being labelled disruptive or non-compliant. [ix] People living with severe mental illness also face additional barriers to managing their physical health conditions.

As Carswell and colleagues (2022)[x] have noted, physical health can be of secondary importance to distressing and debilitating mental health symptoms. Some barriers to caring for people with severe mental illness that have been identified by renal nurses include the rigidity and structure of the units they work in, staff shortages, and a lack of training in mental health.[xi]

As such, high-quality care for adults with severe mental illness and their families must take into account the relationship between physical and mental health, and the impact that a physical condition, like kidney disease, can have on the person’s mental health problem (and vice versa), as well as their lives more generally.

Kidney disease is more prevalent among people living with a diagnosis of severe mental illness. [xii] The factors underpinning this relationship are complex. Some of the association is accounted for by the fact that people with severe mental illness are at higher risk of conditions such as diabetes and hypertension which, in turn, are risk factors for kidney disease; some is due to the long-term use of lithium, prescribed for various mood disorders which can damage the kidneys; and other factors are likely to be involved[xiii]. People living with severe mental illness also experience worse medical outcomes in kidney disease and face other health inequalities.

As such, high-quality care for people with severe mental illness must take a holistic approach that considers the ‘whole person’, including their physical health needs, their mental health needs, and their financial and social needs too.

This also requires joined-up work between various health professionals across primary, secondary, and community care. For example, where medication might have an adverse effect on kidney function, mental health professionals in secondary care should work closely with clinicians in primary care to monitor and signpost patients who may be at risk of developing chronic kidney disease.

To support good quality care for people with severe mental illnesses, we recommend the following in renal care:

• Training for renal staff in severe mental illnesses and their impact on care
• Encouragement of renal staff to work closely with psychiatric teams
• Greater support from managers to enable staff to support people with severe mental illness.

Additionally, we recommend the following in community mental health care:

• Joined up working with other teams, including renal care, to gain a holistic understanding of the needs of the patient
• Data sharing with teams to ensure that all health care professionals can access records, and thus understand the needs of the patient.
• An individualized approach to mental health care, that considers the diverse range of circumstances, needs and experiences of each individual.

How could the service user journey be improved both within community mental health services and in accessing support provided by other services/agencies?

As outlined above, care must be holistic and joined up across specialties and settings, including between physical and mental health.

The journey for people with severe mental illness could be improved by:

• Integrated specialist care
• Multiple referral points
• Implementation of a more tailored approach to mental health care through a stepped model that becomes more specialised depending on the individual’s need.
• Psychologically informed physical care, including renal care
• Health care professionals working proactively and pre-emptively
• Joined up and multidisciplinary working
• Better transitions between adolescent and adult care
• Data sharing between teams and health care professionals
• Improved and widened physical health checks for people with severe mental illness

Joined up and multidisciplinary working

Multidisciplinary working and joined-up care are written into frameworks and guidelines for kidney care. At least one year before starting dialysis, all kidney patients should be referred to a multiskilled renal team for clinical and psychological preparation. [xiv] Some have also recommended that this team should include a psychologist, a counsellor or psychotherapist, a social worker and a youth worker. [xv] However, the gaps and discontinuities in support reported by people in focus groups and interviews indicate that multidisciplinary working and joined-up care are not yet functioning as they should.

This can be detrimental for people with severe mental illness and kidney disease, as clinicians are not able to provide holistic support for the patient.

Psychologically informed physical care, including renal care

All people living with kidney disease should have access to emotional, psychological and practical kidney-specific psychosocial support appropriate to their level of need: effectively providing a ‘stepped care’ model. This will require investment in additional support where there are currently gaps, and the provision of a range of support offers so that people can choose the options most relevant to them. Reliable information about the support that is available should be easily accessible through a range of trusted channels, for example the NHS website’s pages on chronic kidney disease.

Health care professionals should be trained to ask ‘every day’ questions about mental wellbeing and be trained to have the confidence needed to signpost to appropriate mental health services.

Transitioning between adolescent and adult care

Childhood, adolescence and young adulthood are life-stages full of changes. The needs of a two-year-old are very different from those of a ten-year-old which, in turn, are very different from those of a twenty-year-old. One of the most significant changes over these life-stages is from complete dependence on families and caregivers at the start of life to, for most young people, relative independence by their early twenties. This development is gradual and does not happen at the same pace for all.

In contrast, we found in our report ‘Addressing the mental health challenges of life with kidney disease: The case for change’ the transition from paediatric to adult care for kidney patients was relatively abrupt and took place at a ‘cut-off’ age. About 35% of young adults lose a successfully functioning kidney transplant within 36 months of moving from paediatric to adult care, [xvi] making this an especially high-risk time in their life. This transition is a vulnerable stage for young people, when their condition and their psychosocial wellbeing may deteriorate. [xvii] Young adults have worse outcomes following a kidney transplant than any other age group. [xviii] This is likely to have an impact on overall life-expectancy, as well as reducing health, quality of life and ability to work. [xix] Providing the right support during this complex period in a young person’s life is, therefore, crucial. Such support needs to focus on the young person’s wellbeing, not solely on using psychological interventions to increase treatment adherence.

Data sharing between teams and healthcare professionals

Data sharing would ensure that all healthcare professionals have access to information on patients and can support them appropriately- for example, being aware of severe mental illness in a renal setting can mean that all staff can accommodate for patients’ needs and preferences.

Data sharing would also support joined up and multidisciplinary working.

Improved and widened physical health checks for people with severe mental illness

At present, adults with severe mental illness can have a free health check once a year can receive a physical health check, either in primary or secondary care. Specifically, it can be done by a mental health team.

At present, a full check involves 6 different elements.

• Blood pressure
• Height and weight
• Blood glucose
• Blood lipid
• Smoking
• Alcohol

Considering the relationship between chronic kidney disease and severe mental illness, we recommend that a urine albumin-creatinine ratio (uACR) test should be added to the health check to test for chronic kidney disease. This would allow more people to be diagnosed with kidney disease earlier and receive the support they need to manage their condition as well as possible. Earlier detection also reduces progression to end-stage kidney disease.

February 2025