Summary of Scottish youth consultation

In 2019, The Ehlers-Danlos Support UK commissioned a consultation with young people in Scotland with EDS and HSD. We wanted to find out about their experiences and needs in order to guide a dedicated support programme for young people. This important piece of work was made possible by a fantastic group of fundraisers in Scotland, led by Shelagh McKay. By raising almost £2,000, they kick-started this exciting project, which was coordinated by our amazing volunteer Area Coordinators in Edinburgh.

We’re pleased to share with you a summary of the report of this work, The Agency Needed to Prosper. While some of the findings make difficult reading, they provide crucial evidence of the gaps in services for young people with EDS and HSD in Scotland and the impact this is having on their wellbeing and feelings of independence.

The study shows that young people in Scotland living with EDS and HSD or pursuing a diagnosis are not believed and not helped and suffer a great deal of loss including a loss of their dreams and a loss of sense of self. Ultimately their life experiences deprive them of agency now and in their attempts to move forward in life which puts unsurmountable pressure on maternal support and therefore creates complex maternal relationships. They consistently and repeatedly face challenges about their symptoms and conditions from medical professionals especially GPs and nurses and emergency medical teams. The effect of experiences of not being believed and not being helped are clearly devastating and have negative effects on the young person’s current mental health and wellbeing and that of their potential futures.

There are many examples to come out of the study of young people missing out on education, opportunities for further education, being marginalised and isolated by education services and other activities in society.  Young people are grieving the loss of the children they may have been or the teenagers and young adults they want to be – they cannot always dream of future careers and relationships as the barriers they face in accessing these fairly prevent them from being able to plan and pursue any dreams that they have.  Additionally, the physical impact of EDS and HSD prevent many from pursuing joyful activities that other young people without the conditions enjoy such as sports, creative pursuits, socialising with friends, and generally having fun.

The report makes several recommendations and EDS UK is now seeking funding to take some of these forward. We will also be sharing the report with key MSPs, NHS Scotland and other decision-makers in an attempt to improve the understanding of the impact of these challenging conditions and the lack of services for people with them.

Please click the report below to download the Executive Summary.

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