During ME Awareness week in May (11-17) the Sussex ME Society is marking the 10th anniversary of the establishment of a specialist NHS service in the county that has dealt with more referrals than any other local ME service in the UK.
The Sussex ME Society enjoys a good working relationship with the NHS Sussex ME/CFS Service team that continues to receive 40 referrals a month. After assessment many of the mildly or moderately affected patients go on to take part in the popular illness management courses that the service staff provide at a number of sites in the county. The service team have also taken part in GP training at Sussex County Hospital.
The specialist centre was set up with our help following a survey that we conducted in 1999 amongst people affected by Myalgic encephalopathy or Chronic fatigue syndrome along with GPs across Sussex who called for a specialist NHS service to be established. Our report was welcomed by the Sussex health authorities who then invited our representatives to meetings and had contact with our medical advisors. We went on to help the authorities produce reports on ME/CFS that further highlighted the need for a specialist centre. We attended dozens of meetings with Sussex Primary Care Trust officers who planned the service and successfully applied for a share of £8.5m made available at that time by the Department of Health for such UK centres. The service was eventually set up in the Spring of 2005 and has since dealt with over 4,000 referrals. The multidisciplinary specialist team includes a specialist doctor, occupational therapists and physiotherapists along with a psychologist and administrator.
David Butler of the ME Society says “Even though they do not have all the answers to this complicated chronic illness the NHS service is helping many towards improved health”.