Cornwall and Isles of Scilly CFS/ME Service

Address & Contact
Royal Cornwall Hospital
Truro
TR1 3LJ
01872 252935
Website

My experience has been excellent, helping me to pace, plan and prioritise my energy, live in slow motion without feeling like I'm letting everyone including myself down, and keep track of my diet, baseline and PEM. Actually had 12 appointments due to my life disrupting the process, and my OT seeing that I was benefitting despite my hardships. I just have to email if things spiral. Life saving.

Service accepts repeat referrals so although its time limited - 6 to 8 sessions for adults, you can seek repeat referrals. I have been dipping in and out of this service for the last 4 years and its helped me cope and stabilise my health.

Unfortunately it's 6 - 8 appointments to help you 'manage your condition', then you get discharged from the service, so for a long-term fluctuating illness this service is just not fit for purpose. There is not even the chance of a 6 monthly 'check-in' appointment due to lack of funding and huge increased numbers of referrals since covid :( People with ME and their carers deserve so much better.

Received support twice from here . Diagnosis process & recently due to relapse . Both times clinicians have been really informative and supportive in helping me to try & come to terms and manage ME .

Referral refused as a long term sufferer of ME.

Struggle to be rereferred after major relapses. Twice in 11yrs. The doctor gave me incorrect information about ME/CFS worsening with age, with no offer of ongoing support. Feel badly let down.

The input from this ser ice has been invaluable. I was seen for diagnosis within a year, and soon after I started seeing a lovely OT. She visits me at home and helps with anything I need support with.

Children and adults
Moderate to severe
Cornwall and Isles of Scilly (patients with a GP here)
Specialty Lead/Service Manager (OT), Clinical Lead Psychologist, 3 B6 AHPs, 1 B7 OT
Referrals through Referral Management System, primarily GPs for adults from aged 17, and from Paediatricians for children up to the age of 16.
Medic/Specialty Lead provide assessment and diagnosis.
Psychological one to one interventions, primarily virtual (video/phone) bur face to face available dependent on clinical needs.
Occupational therapy one to one and group interventions, primarily virtual (Video/phone) though some home visits as indicated by clinical need.