Over the last 18 months, the momentum generated by ME Support (IOM) is undeniable and offers encouragement for other support groups. The ME Association’s Trustees were so impressed by the work of Juan Corlett, the Isle of Man charity’s Chairman, that they have recruited him.
The Isle of Man has become a shining example of collaborative working between politicians, health care professionals, local press, the ME / CFS community and the Long COVID community. Celebrations are forthcoming as the Isle of Man’s new combined ME/CFS and Long COVID service prepares to start receiving its first patients later this month.
Teresa Cope, CEO of Manx Care (the Isle of Man’s health care provider), reflects on her interactions with Juan and ME Support (IOM):
“I first met Juan in May 2021 to understand the deficits in the provision of service for those living with ME/CFS. Over the last year, Manx Care has worked closely with Juan to persuade Government to fund a new service from 2022.
“Through continued close involvement of Juan and other experts by experience, Manx Care has developed a new service, focussed on the needs of those living with ME/CFS and Long Covid, clearly demonstrating the value of co-production.”
Volunteering Provides Steppingstone to Employment
Neil Riley, Chairman of the ME Association, explains:
“I’m delighted that Juan's ME/CFS journey has allowed him to return to the workplace. Juan endured ‘Severe ME’ for large parts a 4-year hiatus from his career.
“We pride ourselves on creating roles which accommodate the pacing strategies of our employees who live with ME/CFS.
“Juan’s story is truly inspirational, and we have been struck by his resolve, bravery and perseverance while volunteering for ME Support (IOM), the local support group of the Isle of Man.
“Juan has excellent advocacy, communication and relationship building skills, developed during his professional career and the results speak for themselves.”
Being Listened To
Our community has not always been listened to as we would have liked. The successes have been too few and far between. However, the tide may finally be turning. Government-led working groups are developing a delivery plan on ME / CFS and public awareness of post-viral syndromes has been heightened by the Covid pandemic.
Manx politicians were won over during a fortnight of intense advocacy in May 2021 (Manx is the nationality of the Isle of Man). There was a protest that attracted media interest, but Juan explains that “the hearts and minds of politicians were won by sharing the reality of ME and providing practical insights. Heavy criticism would have chased them away.”
Tactful, well-planned and regular use of local media increased the spotlight on key issues, although closer inspection indicates ME Support (IOM) have consistently avoided direct criticism of influential figures in public. Politicians and healthcare representatives on the Isle of Man have grown fond of listening to the ME community and receiving their help. The relationships have flourished over the last 18 months.
Speaking Their Language
Juan doesn’t speak the Isle of Man’s own Gaelic language, but he is fluent in both English and management speak, which he refers to as a “necessary” part of his work with Manx Care. Having lost count of the new terms learnt, Juan reflects that ‘co-production’ is one of the most important. The NHS claims to have a strong appetite to work with ‘Lived Experience Experts’ as indicated by recent announcements in Scotland and elsewhere.
“Learning the language wasn’t the most important part though and developing a new service was complex. When progress occasionally stalled, we worked hard to find solutions, with assistance from experienced ME / CFS specialists in the UK.
“The key has been to work together when the answer wasn’t obvious. We have had differences of opinion but always shared a desire to help people living with ME. Manx Care wants the Isle of Man ME / CFS and Long COVID project to succeed and so do we.”
Plans Developing At Pace
Juan will be given time to settle in and adjust to managing his energy levels while being back in work. He has hit the ground running and is making excellent progress planning a new initiative for the ME Association.
There will be greater assistance for local community representatives and increased interaction with specialist health and social care services. This work will compliment Government led working groups and enhance health and social care provision for those living with ME.
The new role is titled Engagement Lead for Community Support and Integrated Care. Further recruitment to Juan’s team is planned in the coming months.
Juan says he is “honoured to be joining such a prestigious UK charity and the Trustees have placed great faith in me to lead this exciting work.”
“We will keep you updated, and I am excited to share more details of our plans as they grow. I am looking forward optimistically!”
