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Mental health in the rare disease community
Patient Advocacy
Mental Health

Mental health in the rare disease community

7/8/2022    |    0 min read

Congenica and partners respond to the UK Government’s open consultation to support mental health and wellbeing  


A collaboration between Congenica, Gene People, Rareminds CIC, UCL Great Ormond Street Institute of Child Health and Addenbrooke’s Hospital, highlights the mental health and wellbeing issues in the rare disease community today. 


Congenica’s Patient Advocacy and Engagement group is today launching its mental health initiative, which will explore different areas of mental health in the context of rare disease. In general, mental health disorders are among the biggest causes of disability worldwide. Research shows that social stresses in early childhood are the most significant risks for depression and anxiety in adolescence, and adolescent mental illness is a risk for depression and anxiety in adult life. 


Mental health in the rare disease community 

There is a significantly higher risk of mental health challenges in the rare disease community. In the UK alone, around 3.5 million people live with a rare disease, but the community affected is far bigger as it includes family members who are involved in day-to-day care and support.  


Many people with rare diseases need high levels of health and social care interventions and this can have a big impact on family life, including increased financial pressures and poor mental health. In many cases there may be biological (as well as psychological and social) drivers of emotional and behavioural symptoms. Children with intellectual disability – which is common in the rare disease group -  are also known to have greater need for help with emotional and behavioural symptoms and have higher rates of mental ill-health.  


Response to Government consultation on mental health and wellbeing 

On 12th April 2022, the UK Government’s Department of Health and Social Care called for evidence to seek views on how to improve everyone’s mental health and wellbeing, particularly for people who experience worse outcomes than the general population. As part of a collaboration with Gene People, RaremindsCIC, UCL Great Ormond Street Institute of Child Health, and Addenbrooke’s Hospital, Congenica is pleased to submit the collaboration’s response to this consultation in the context of rare disease.  


It is the view of this collaboration that having a rare disease in a family is itself a health inequality, given the lack of services and understanding for these conditions. In terms of mental health provision for patients and families with rare conditions, it is clear that current mental health services are inadequate. This provision needs to be integrated into services for those with rare diseases. 


Alastair Kent, OBE and Chair of Congenica’s Patient Advocacy and Engagement Advisory Board said: “Mental health has for too long been a Cinderella service in the NHS. The consultation, and the commitment this implies to address this issue, is to be welcomed. Accordingly, this response from a consortium of different stakeholder groups is important, highlighting as it does the particular issues affecting families living with rare and genetic conditions, adding an important additional dimension to the debate.  


“The partnership between Congenica, patient organisations, academia, clinical medicine and others is a demonstration of a partnership that will support the opening up of silos. It also represents a desire to move to a more holistic approach for the diagnosis and support of families affected by these devastating conditions.” 


Read our full response.