Very excited to have any kind of referral for help, but help was via phone calls and not specifically tailored towards ME/CFS. Just generic fatigue management advice. The nurse who spoke with me was pleasant enough but she did the vast majority of the talking. I found this exhausting even though each call only lasted about 10 minutes.
This service is completely and woefully inadequate. There is no multi disciplinary team, no specialist input, no long term care plan/support and/or follow ups. Once you've done the 6, 1 hour long phone calls over 6 months carried out by an Occupational therapist to read through the booklet they send you, you're discharged and left to fend for yourself again because there is no GP support either.
I was referred 2yrs ago by GP as Ive deteriorated over decades to severe/v.severe. I filled in v.poor online surveys (barely acknowledged physical symptoms -more on mental attitudes etc)Despite this seeming to not understand real ME /PEM I still hoped. But 1/2way thru phone assessment she stopped because Im too severe -theyre not funded for severe/v severe!! GP frustrated as nothing else available
I was referred to help with my ME diagnosis / symptoms, but it was clear it only focussed on fatigue and not the type of fatigue that ME people have, it felt more on par with people who were just struggling with tiredness.
After a few telephone sessions that weren’t overly helpful, I was discharged for being “too severe” back to my GP. My GP didn’t follow up.
Only provides basic pacing advice over the phone. Not very knowledgeable and encouraged GET even after being told the evidence against it.
Beyond terrible, they read from an out dated booklet. Cannot give advice for anything other than the most mild of cases and refuse to see anyone more severe even though they are the only service available.
They dropped me as soon as I entered a crash and needed them the most.
They have no understanding of brainfog, and exhaustion and have no flexibility if ability drops
Everything is below acceptable standards. Forced into harmful BPS model eg 'You are not well because not trying' stupidly. They refuse to believe ME is biological. Relapsed and came out permanently worse, they didn't care. Woman has no empathy for ME and didn't care about NICE booklet. Not worth the ME energy needed to engage with this service.
I was referred to SCF by my GP. They are only commissioned by the ICB to provide services to those with mild/moderate fatigue and work burnout. I have severe ME and there was little they could offer me, other than the chance to vent some of my frustrations! The NICE guidelines say that specialist services should be commissioned to support the severe end of the ME spectrum.
Description South Coast Fatigue partners with corporate organisations, private health practitioners, individuals and the NHS to provide assessment and rehabilitation programmes for people with long term conditions, low energy, fatigue, Long COVID and burnout, to remain well at work, return to work and improve their health and wellbeing.
This service accepts NHS referrals for ME/CFS. They do not mention NICE NG206 guidance on their website or Post Exertional Malaise. They may not be well equipped to deal with ME. They only accept Mild to moderate ME. They have a team of Occupational Therapists, Specialist nurse and psychologists. South Coast Fatigue partners with corporate organisations, private health practitioners, individuals and the NHS to provide assessment and rehabilitation programmes for people with long term conditions, low energy, fatigue, long COVID and burnout, to remain well at work, return to work and improve their health and wellbeing. Brochure: South Coast Fatigue Brochure
