Mental Health Matters: The Unseen Issue in Metabolics

These statistics are especially important when considering that Inherited Metabolic Disorders (IMDs) are a collection of over 500 lifelong conditions that affect over 20,000 people in the UK alone. The impact on the mental health of our communities is clearly visible through the work we do, with an average of 23 mental health related individual enquiries received per month.

Mental health is complex and is influenced by our genes, life experiences, upbringing, and environment. Considering this wide range of factors, living with a rare disease often magnifies mental health issues due to the associated pressures. This relationship was highlighted in the Mental health care for rare disease in the UK paper, published in 2022, which was informed by 1,231 rare disease patients and 564 carers. More than 90% of responders stated that they have felt worried/anxious; stressed; and /or low/depressed and 36% of patients and 19% of carers stating that they’d had suicidal thoughts. The study revealed that the emotional impact of living with a rare disease was caused by multiple factors and the statistics from people’s responses are displayed in an infographic we have put together below.

Through our conversations with people living with IMDs and their families, we recognise that these issues impact the mental health and wellbeing of our communities. Additionally, it has been identified that some IMDs are a rare but significant cause of psychiatric disorders in adolescents and adults, with these conditions being linked to psychotic disorders, depression, and anxiety. This impact is not, however, isolated to the person affected. The families of persons living with IMDs are also psychologically impacted due to poor coordination of care leaving the family to effectively coordinate with multiple systems, worries about the future, disease acceptance and a low quality of life. Further to this, many IMDs require careful measures to avoid triggers which can cause life-threatening metabolic crises, this places an enormous degree of anxiety on families. This burden of worry is also carried by adults with IMDs, who often struggle to determine which symptoms are early signs of metabolic crises, leading to high levels of anxiety that can affect an individual’s quality of life.

To reduce this impact, mental health support must be offered. However, people living with IMDs struggle to access mental health services due to a lack of understanding amongst healthcare professionals, meaning when individuals are referred to mental health services, they aren’t able to access the support they need. This means the responsibility of care falls to patient organisations to facilitate access to counsellors and/or expensive mental health services via external organisations. Even if persons living with these conditions can access mental health services specifically for their conditions, a 2019 review of these services by Lynne Aikenhead (a clinical psychologist and honorary lecturer at the Department of Neuromuscular Diseases, UCL Institute of Neurology) states that they are unable to meet international guidelines. This is then further worsened due to the services having high levels of provision inequality as demonstrated across adult services with some offering no mental health services and those that do varying in their employment of full-time equivalent (FTE) psychologists with a ratio of 1 FTE psychologist per 400 patients to 1 FTE psychologist per 3,000 patients.

The England Rare Disease Action Plan (ERDAP) sets out priorities and actions to achieve the national vision laid out in the UK Rare Diseases Framework to improve the lives of the 3.5 million people living in the UK with a rare disease. As part of the 2023 ERDAP iteration, mental health was highlighted as a focus area under action 21 which requires all new and revised service specifications for patients with rare diseases to consider user’s psychosocial needs and ensure coordinated pathways for access to mental health. This is underpinned by action 19 which aims to support the healthcare workforce to ensure patients are well informed and well cared for during their diagnostic and management journey and action 20 which includes commissioning research to provide the evidence needed to operationalise better coordination of care in the NHS.

To achieve these, provisions must first be put into place to refer people to facilities and systems offering mental health support. In steps to address this gap, the NHS Long Term Plan has committed an additional £2.3 billion a year for mental health services in England by the 2023 to 2024 financial year. This will serve two important purposes: supporting an additional 2 million people in accessing NHS-funded mental health support and growing the mental health workforce by an additional 27,000 staff to provide these services.

Despite these steps, just 1 in 8 adults affected by mental health problems are receiving treatment and according to the Centre for Mental Health, it is estimated that up to 10 million people in England may need support for their mental health. As a result, the NHS Long Term Plan still leaves many without access which is compounded by the chronic shortage of qualified mental health nurses. This has led to services seeking other solutions, such as employing ward managers and other professionals to substitute for nursing cover which raises concerns about safety and wellbeing due to staff taking on responsibilities they may not be qualified for.