NHS CFS/ME Clinics

History & Introduction

In 2004 the Department of Health announced funding for 13 NHS Clinical Networking Centres (CNCs) around the country to support the development of local services for people with ME/CFS. These centres would:

• Provide access to specialist assessment, diagnosis and advice on treating the condition.
• Develop education and training resources for health professionals.
• Support clinical research into the causes and treatment of ME/CFS.

The Centres are based in Newcastle, Leeds, Liverpool, Manchester, Sheffield, Birmingham/West Midlands, London (St. Barts), Surrey (Sutton), Bath/Bristol, Dorset/Hampshire, Nottingham, East Anglia and Cornwall/Devon.

In addition, local support teams (called LMDTs - local multidisciplinary teams¹) were established to provide support to those adjusting to, and coping with, ME/CFS by:

• Providing specialist rehabilitation programmes to help increase energy and activity levels.
• Developing a network of domiciliary services for severely affected people.
• Supporting GPs and other health professionals and, in partnership with local self-help groups, develop expert patient and self-management initiatives.

There are two LMDTs based in Cumbria - Cumbria (North) & Lancashire/Cumbria (South). Our LMDT is under the Clinical Networking Centre based in Newcastle.

I personally have some reservations about the kinds of treatment on offer at these clinics. As they are NHS funded, they will have to rely on double blind randomised controlled studies to back up any treatment or mangement strategies they use. And, as the only trials of this kind in the UK have been on cognitive behavioural therapy and graded exercise, I'm certain this will be the treatment on offer, despite GE making 60% of severely affected people worse according to patient surveys carried out by both Action for ME and the 25% ME Group. My personal reservations are shared by the 25% ME Group. I'm also concerned people with ME will see the treatment offered by the Centres as a 'cure' and as far as I know there is no 'cure' for M.E. Saying all that, the fact that there is a clinic at all is fabulous and we have to start somewhere. Good management of the disease, especially in its early stages, offers a better chance for recovery and practical and empathetic help and support is invaluable.

The LMDTs werre all supposed to include patient representatives from the local ME Community. As I both have ME and a special interest in the severely affected, I approached North Cumbria LMDT to ask to become involved. I attended the initial Open Day and later a Steering Group meeting. I also had two further meetings in my own home with members of the LMDT. Despite the fact that I felt, on the whole, my concerns and questions were positively encouraged and taken on board, I still feel that patient representation isn't playing a large enough part in our local Clinic. And despite MEED being the only ME based website in our area, I am not kept informed of the progress of the Clinic or my website utilised to reach patients, despite asking for this from the team. This is very disappointing. In the end, I felt I was not offered a role to play in the Clinic and so am not attending any further meetings.

Centre Staff

Details of our local Clinical Networking Co-ordinating Centre are:

• Based: CFS/ME Clinical Network Coordinating Centre, Equinox House, Silver Fox Way, Cobalt Business Park, Newcastle Upon Tyne NE27 0QJ
• Headed by: Clinical Champion Dr Gavin Spickett (Immunologist)
• Co-ordinator: Louise Wilson (email: lou.wilson@nhs.net)
• Further information can be obtained by emailing: cnccenquiries@northtyneside-pct.nhs.uk or ringing: (0191) 291 9397

Details of our Local Multidisciplinary Team are:

• Based: 1st Floor, Keswick Cottage Hospital, Crosthwaite Road, Keswick CA12 5PH
  (fortnightly clinics at Penrith & Carlisle, monthly clinics at Wigton & ad-hoc clinics at Whitehaven).
• Contact: Tel: (017687) 67033 or email: cfs-team@ncumbria.nhs.uk
• Members:
  Sue Watkinson
  Heather Garry, Occupational Therapist
  Stephen Atkinson, Physiotherapist
  Gavin Spickett, Immunologist (providing a monthly diagnostic clinic at Keswick only)
• Treatment: lifestyle management, graded activity, rest, relaxation & cognitive behavioural therapy.

Accessing the Clinic's Services

Referral to the North Cumbria CFS/ME Clinic must be made by your GP who, if they don't already have an information pack, can contact the Clinic at Keswick Cottage Hospital for details on the referral process (see above for contact information).

The support group ME North East has a dedicated help line for information about the CFS/ME Clinics in our region. Operated by ME North East staff and trained volunteers, the helpline is open to all and provides a link to the CFS/ME Clinical staff for specialist advice, has information about the services available, details of the referral process and what to expect from a Clinic appointment. Tel: (0191) 3891841 Mon-Fri 11.30am to 2.30pm.

Expert Patient Courses