Mental health is something which affects us all, and coping with any illness has been shown to impact people mental well being as well as coping with their physical symptoms. For rare disease patients this impact is somewhat intensified. For a patient with a little known diagnosis they struggle not only coming to terms with their illness, but struggling to find a diagnosis, dealing with physicians being dismissive of their symptoms and even after diagnosis accessing a support system with experience of dealing with the emotional challenges of living with or caring for a patient with a rare disease.

Rare disease UK in partnership with Genetic Alliance UK and SWAN (syndromes without a name) UK recently published a report on the effect on mental health of living with a rare disease. 

Many rare disease patients are the experts in their disease, they will constantly have to push for diagnosis, treatment and practically end up begging for help from healthcare professionals (HCPs). The constant fight to get their diagnosis, find a treatment and come to terms, in many cases, that their disease has no treatment or cures and that this disease will last their whole life. With many rare diseases presenting in children, it is particularly difficult coming to terms with this for the parents, who in many cases will learn their child's life expectancy is drastically reduced, or they will have to remain a life-long carer.

Within the report they published the results of a survey with 1,350 patients with rare disease and 571 carers. Of these respondents 36% of patients had experienced suicidal thoughts, along with 19% of carers. For patients this percentage is above the national average for the UK (21%). For many patients the main causes they associated with these feelings were the poor awareness of their condition amongst HCPs, the process of trying to get a diagnosis, not being believed by HCPs and poor care co-ordination. Many patients / carers felt like they were being passed off as being neurotic or having health anxiety, meaning they had to fight even harder to get recognition of their physical symptoms.

Something that could help improve mental health in this population is to educate HCPs about rare diseases in general, but also how to cope with the emotional impacts of the disease on their patients. On a whole few physicians focus on the mental health of their patients and are more focused on the physical symptoms once diagnosis has been achieved. This is not the fault of HCPs, they need to be provided with the requisite skills and knowledge of how to handle discussions around their patients mental health and the emotional challenges of having a rare disease. There will be doctors who will perform above and beyond for their patients to understand their emotional challenges, but much like the diseases rare patients are afflicted with their challenges are niche and disease specific. 

With further movement in the health service towards a holistic view of disease, we need to look at ways of bring forward mental health support for all diseases, but particularly in rare disease. By empowering HCPs and giving them better information we can help improve the lives of millions of rare disease patients and carers across the country.

Read the full report here