Funding for Chronic Fatigue Syndrome treatment

Summary

The request sought information on funding decisions, available treatments, and waiting lists for Chronic Fatigue Syndrome (ME/CFS) in the Isle of Man. The Department of Health and Social Care disclosed that current treatments are based on 2007 NICE guidelines (CBT and GET), noted patient concerns about GET, and provided specific neurology referral waiting list statistics.

Key Facts

• A review of CFS/ME treatment options was conducted in 2017 under the sponsorship of then Minister Kate Beecroft.
• Current evidence supports Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) as the main interventions.
• Patient advocates raised concerns that GET is not suitable for all patients and criticized the 'one size fits all' approach.
• NICE is reviewing the evidence and plans to publish an updated guideline in 2020.
• Neurologist referrals are prioritized based on urgency as determined by the referring healthcare professional.

Data Disclosed

• 2017
• 2007
• 2020
• 1 October 2018
• 18 October 2018
• 16th October 2018
• 449 referrals

Original Request

Decisions and discussions regarding the funding for specialist and consultant referrals and treatments for patients with ME / CFS. What funding and clinical treatments are available and how long are waiting lists.

Data Tables (1)

Full Response Text

Chief Executive: Malcolm Couch Freedom of Information Team DHSC Digital Cronk Coar Strang IM4 4RJ

(01624) 642621 dhsc@foi.gov.im Website: www.gov.im/dhsc

Our ref: 607974 18 October 2018

Dear ###

We write further to your request which was received on 1 October 2018 which states:

Decisions and discussions regarding the funding for specialist and consultant referrals and treatments for patients with ME / CFS. What funding and clinical treatments are available and how long are waiting lists?

Clarification sought and the following details provided: I am interested in decisions and discussions within the last 5 years by clinicians and politicians who set budgets and decide which treatments are to be funded and why. With regard to waiting times it is current information that I require. We are pleased to be able to provide a response to your request: During 2017, work was undertaken under the sponsorship of Mrs Kate Beecroft (then Minister for Health and Social Care) to review the treatment options offered to patients with CFS/ME and to identify any gaps where services could be strengthened. The evidence used to underpin this work was the National Institute of Health and Care Excellence (NICE) Clinical Guideline (CG53) published in 2007. Currently, the evidence base supports cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as the main modes of intervention for CFS/ME. During the review work, patient advocates raised concerns that graded exercise therapy is not suitable for all patients and that a ‘one size fits all’ approach to treatment options is also not appropriate. There is currently inadequate evidence to support interventions other than CBT and GET. NICE are reviewing the evidence and will publish an updated guideline in 2020. Local services will then be reviewed in line with this. In the meantime, DHSC are working to secure additional capacity to offer CBT to patients with CFS/ME. GET continues to be available through physiotherapy

services and non-GET based general rehabilitative support can also be offered to those for whom GET is not considered appropriate. Patients can also access occupational therapy support to help maintain independence (e.g. through adaptations or equipment). All patients referred to a Neurologist (including those referrals relating to ME/CFS) are appointed based on the urgency of the referral as determined by the referring health care professional. As of the 16th October 2018 there are 449 referrals waiting for a first appointment to see a Neurologist. Please quote the reference number 607974 in any future communications.

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Yours sincerely