Summary

 

1. Richmond and Kingston ME Group is a self help group with 102 members out of the estimated 1300 people with ME in Richmond and Kingston. Our evidence is based on our collective experience of living with the specifics of ME including members’ reports of their experiences of the health service and our Group’s experience of campaigning for better services from local PCTs.

 

2. Health Policy documents at both national and local level tend to be wide-ranging, and our specific needs are subsumed under generalisations and forgotten when it comes to implementation.

 

3. The key problems encountered at the primary care level are poor access to GP services, lack of understanding of ME by GPs and practice nurses, and inconsistencies in the treatments offered by different GP practices.

 

4. People attending the specialist ME/CFS clinic at Sutton welcome finally getting a diagnosis and understanding from staff, but have criticised the limited follow-up of patients, the limited range of treatments offered and, crucially, the difficulties presented for sometimes very ill people by the journey to and from the clinic.

 

5. As far as we have been able to ascertain, neither Richmond nor Kingston PCT has a policy for people with ME in their areas despite a series of meetings held with Richmond PCT under the auspices of the Richmond Neurological Partnership in which our specific needs were raised.

 

What needs to be done at the local level

 

A lead GP practice for ME should be identified in each PCT area to disseminate good practice and provide training, in liaison with local ME Groups.

A specialist ME nurse should be appointed for each PCT area, based in the community, to provide support for newly diagnosed people with ME and, critically, provide domiciliary care for severely affected people with ME.

All GP practices should provide information prescriptions on suspected diagnosis of ME identifying initial points of contact and support for patients.

GP practices should be aware of the particular difficulties facing people with severe ME in accessing their services and be flexible in the form of contact offered.

Local provision for other long term conditions, for example, in Richmond PCT the Community Neuro-Rehabilitation Team, which provides a multi-disciplinary neurological rehabilitation service for all those with a newly acquired neurological condition, should be adequately staffed and funded to provide support for newly diagnosed people with ME.

 

Despite the difficult journey, limited follow-up and limited treatments offered by the Sutton clinic, it nevertheless provides the only opportunity for a consultant diagnosis together with understanding and support. We are concerned therefore that funding continues for the Sutton clinic. It is also essential that specialised ME care is available locally for Richmond and Kingston residents. As a minimum, there needs to be a specialist ME nurse in each PCT area.

Richmond and Kingston PCTs, in order to meet the requirements of the NSF for long-term conditions, need to specify what services they will be commissioning to meet the unmet health needs we have identified.

 

What needs to be done at the national level

 

The NICE Guidelines on ME need to be reviewed so that guidance on treatments reflects the biomedical research into ME that has already been done. Lead consultants like Dr Bansal at Sutton, who are open to a variety of approaches to managing ME, can then incorporate other treatments into the clinic.

The shortage of health professionals who specialise in ME needs to be addressed at national level and information about the diagnosis and management of ME needs to be incorporated into initial and in-service training of doctors, practice nurses, physiotherapists and occupational therapists with input from ME support groups.

 

The Department of Health needs to set specific targets for PCTs for services for people with ME under the NSF for Long term Conditions to ensure compliance.

Recognition for ME as a serious neurological long term condition should be confirmed at a national level — for instance by including ME in the list of medical conditions given exemption from NHS prescription charges.

 

The gap between the broad policy guidelines at both national and local level and the specific needs of our members means that in practice we fail to get the medical care and support we require. As a self-help ME Group, many of us seriously ill ourselves, we are attempting to pick up the pieces for people who have faced ignorance and prejudice from the very health professionals who should be caring for us.