Wellbeing Service

ASUK Wellbeing Service

Mental Health and Rare Diseases 

It shouldn’t be underestimated the impact that a diagnosis of a rare condition can have on our physical, mental and emotional health.

Research published in 2022 by Rare Disease UK reports that more than 90% of study respondents felt anxious, stressed or depressed due to their rare condition, and that 36% of patients and 19% of carers had experienced suicidal thoughts. You can view the report by Rare Disease UK HERE

With many rare conditions often being complex, it not only has an impact on those affected but also on the wider family members too.

Study conducted by Spenser Tansley Et Al 2022

• Questionnaire of over 1200 people living with a rare condition and over 560 carers
• Investigating how having a rare disease impacted on an individual’s mental health
• 90% stated that they felt; anxious, depressed, stressed or worried
• 36% of individuals with the condition and 19% of carers stated that they wanted to end their life
• 23% of participants stated that the health care practitioners facilitated conversations about mental health including sign posting to services
• 1/2 of participants stated that mental health wasn’t mentioned at all in their health care appointments
• 88% stated that they had negatively been impacted by their interactions with health care professionals

Recommendations

• Need for more mental health interventions for those being impacted by rare disease and relevant signposting

ASUK also conducted a survey at the end of 2023 to try and understand what the AS community knew about mental health and how ASUK could support their wellbeing. Comments in the survey showed that people diagnosed with AS have experienced feeling low and isolated, this was especially relevant in lock down during the Pandemic. The survey illustrated that participants believed that maintaining their wellbeing was important with over 80% rating its importance over five out of ten.

“I also wanted to say, how lovely it was to speak with Melissa the other day!
Speaking to someone doing so well that has Alström was just amazing. More of that would be wonderful.
I genuinely am thankful that we have Alström UK, what would we do without you.” (Parent)

With this need in mind, ASUK are piloting a new ‘Wellbeing Service’ where we will develop 1-1 and group wellbeing sessions, webinar sessions for the global community, round table discussions prior to the AS multi-disciplinary clinics and signpost to relevant local organisations for families and individuals to reach out to, as well as wellbeing resources and top tips.

Melissa Crowland will be the new Wellbeing Coordinator, with her extensive lived experience and knowledge she will be an asset to the ASUK team.