The Welsh Government has commissioned a review of eating disorder services in Wales, with opportunities for people with lived experience to get involved in shaping the future of treatment. Gemma Johns, researcher at Swansea University, who is working on the review, explains more about it.
The Welsh Government has provided us a rare but timely opportunity to completely rethink and reshape the eating disorder services across all ages and at all levels, in a way that better fits the needs of the Welsh population, whether rural or urban. With such an amazing opportunity, Jacinta Tan, the Service Review lead, did what she does best – she opened discussion up to the public, allowing us all to come together and rebuild a better eating disorder system that fits all!
“I am an eating disorder psychiatrist, but I’m mainly a researcher who spends a lot of time sitting and just listening and trying to understand people’s experiences of illness and treatment,” Jacinta explained. “So I cannot imagine trying to examine our current system and redesign a future one without asking the real experts – people with eating disorders and their families and friends – to tackle this really important task with me.”
To do this, Jacinta is backed up by a remarkable team of lay representatives consisting of service users and families, Beat, and Welsh mental health charity Gofal to help engage with the public. Together, the team are running four workshops across Wales in May 2018 to explore what people would like in their ideal eating disorder service for Wales, and then again in the autumn of 2018 to refine these ideas into feasible models to offer the Welsh Government. These workshops are designed to be creative and engaging, allowing the lived experiences and voices of the public to reshape eating disorder services in Wales.
“As someone who's spent many years of my life battling with an eating disorder I've seen first-hand the devastating impact they can have … I've become involved in the service review in Wales because I know the impact that receiving treatment can have. I believe that the right help at the right time can help people to take steps towards recovery. But sadly, the level of resources being put into eating disorders in Wales at the moment means that not enough people are getting that specialist support, close-to-home and at the right level of intensity to help them get better. It took me over six years to get specialist support for life-threatening anorexia, mainly because services in Wales were poorly developed and inaccessible at the time.
“Things in Wales have improved, but this review is a real chance to put the voices of people like me at the centre of decisions about the future of treatment. The workshops will help the Welsh Government to make bold decisions to improve the landscape of services in Wales, to make sure that people don't have to go through the same experience I had to in order to get the help I needed.” James Downs, Service Review Team Member and Service User in Wales.
“…in the eight years my family have been walking alongside my daughter’s anorexia, as well as the birth of the Framework for Eating Disorders (2009), Wales has come a long way. [This is] not least by the Welsh Government calling for a refresh of the Framework by Public Health Wales in 2016, investment in funding for services, and now the review of the Framework. All of [this] I applaud, as they have and will shine a powerful light on the places and services in Wales that are failing, of which there are many… However, whilst applauding, I am on the other hand batting down the fires…
“Early intervention remains key… If we had been given specialist services, not just communal garden CAMHS, I totally believe my daughter would have been free from this illness years ago… Fundamentally, it would not be costing the NHS so much if we treated people with eating disorders as we would a physical illness. Prompt, early intervention by a specialist would be a better use of resources. The review by Jacinta and her team will, I'm certain, uncover where the gaping holes are in our services in Wales. It has not come soon enough, … and I believe we have the ability to lead the UK in and through her findings.
“Parents, carers, significant others and those who support a person with an eating disorder in Wales have a chance to put their opinions to the review panel through May, and I would urge them to attend one of the meetings to have their say on how the services in Wales are doing, both positively and negatively.” Helen Missen, Service Review Team Member, and Mother of Service User.
If you would like to get involved, and be part of this exciting opportunity and contribute to making some real change, please join us! To do this, all you need to do is register for the May 2018 workshops using the links below, or email us with your details, and we can do this for you. Do email us if you can’t make a May workshop but want to know about the autumn workshops. Even if you can’t attend, we have an online survey for you to give us your opinion and tell us your experiences and recommendations.
Carmarthen, May 19th (1-4pm) Wrexham, May 12th (1-4pm)Bangor, May 22nd (1-4pm)
Please note, this survey is now closed.
To find out more, or to ask for us to register you, please email Gemma.Johns@Swansea.ac.uk or call her on: 01792 513289.
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Contributed by Gemma Johns