The proposed closure of the specialist inpatient service for people with ME/CFS at the Queen's Hospital, Romford, came up in Parliament yesterday (17 May 2011) – when Minister for Care Services Paul Burstow made it clear that the Department of Health could not intervene in the way the NHS locally sets its priorities.
Mr Burstow had been asked by Annette Brooke MP, the acting chair of the All Party Parliamentary Group on ME, what representations the Secretary of State for Health had received in respect of the proposed closure of the specialist inpatient service, and if he will make a statement.
In a written answer, Mr Burstow replied:
The Department has received numerous representations on the proposed closure of the specialist inpatient service for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) at Queen's hospital, Romford. It is for the local national health service to provide services which best serve the needs of its local population.
The Department is not prescriptive about the type of services that should be provided by the local NHS for CFS/ME patients, however trusts must adhere to the National Institute for Health and Clinical Excellence guidelines:
Every person diagnosed with CFS/ME should be offered:
information about the illness
acceptance and understanding
assistance negotiating the healthcare, benefits and social care systems
assistance with occupational activities including work and
education if appropriate
An individualised management plan should be developed with the person with CFS/ME, and their carers if appropriate. The plan should be reviewed and changes documented at each contact. It should include:
relevant symptoms and history
plans for care and treatment, including managing setbacks/relapses
information and support needs
any education, training or employment support needs
details of the healthcare professionals involved in care and their contact details.
An MEA contact close to the service tell us that, at present, there is just one bed occupied for treatment of ME/CFS out of the eight beds in the Sahara Ward at Queen's Hospital which were originally set aside for patients with severe ME. The service is under threat because of the retirement of the clinical lead, consultant neurologist Professor Leslie Findley.
Mrs Brook again! Cool 🙂
Not so cool of course about Romford. Be interested to hear more about the service there and what plans are afoot to rescue them…
Is it clear this is closing? Where/how will the local NHS facilitate this specialist need in future?
Interesting, I’ve printed out the “guidelines” for my doctor, I am keen to hear him explain why he has not followed a single one of them with regard to my treatment.