The ME Trust was founded in 2011 by Hannah Clifton, following her own recovery from ME, with the aim of bringing life transforming treatment, care and support to people with ME/CFS.
Initially the Trust focussed on raising money to support in-patient care at Burrswood Hospital, where a specialist service had been developed. The team at Burrswood, led by Dr Paul Worthley, pioneered a whole person approach to the treatment of ME. People were treated as individuals, with equal regard given to their medical, physical, emotional and spiritual needs.
In 2015, when Burrswood changed its priorities and was no longer able to accept patients with ME/CFS, the Trust was forced to consider how best to help people with ME/CFS, especially the most severely affected cases. A new model of care was developed based on home visits and telephone consultations. At first Doctor Worthley worked alone, but understanding the value of whole person care, he quickly gathered a team around him to replicate the team approach at Burrswood. Today the team consists of a Doctor, a Nurse, a Physiotherapist, four Counsellors and three Chaplains.
In 2018 the Trust opened a Clinic in Crowborough, East Sussex, offering face to face consultations to patients well enough to travel to see the Doctor and/or Physio. Follow up appointments are arranged, and usually conducted by telephone and/or skype. The Clinic has also enabled the training of our first ME Specialist Nurse who can continue to support patients after an initial consultation through home visits and phone calls. With the opening of the Clinic, The ME Trust registered as a Healthcare Provider with the Care Quality Commission. At first inspection in 2019, the Trust was given an Outstanding rating.
Looking to the future, the ME Trust intends to build on this model. We are recruiting more Doctors, Physiotherapists and Nurses so that we can offer our services to more people. We aim to grow a network of Doctors and specialist Nurses throughout the country. We will continue to offer whole person care to support more people with ME/CFS.
Despite the ongoing pandemic we have continued to provide care and support to people with ME/CFS, working remotely through telephone and video calls. Our face to face clinic has had to close for the foreseeable future, but home visits will resume when Covid restrictions allow. In 2019-20 we carried out over 1,000 consultations and helped more than 240 individuals. The number of enquiries continues to increase, especially as some people with Long Covid are being diagnosed with ME/CFS.