Leicester UK: NHS referral pathway for ME/CFS >> FOI request from MEA

[charles shepherd]

Leicester UK: NHS referral pathway for ME/CFS >> FOI request from MEA

Self- explanatory

From MEA:

In 2012, your Trust announced that the specialist service for patients with M.E./Chronic Fatigue Syndrome at the Brandon Unit, Gwendolen Road, Leicester, was to be relocated to the Leicester Royal Infirmary where it would come under the ambit of neurology. This move has not yet taken place.

Please could you let me know whether it is still the Trust's intention for the relocation to take place and, if so, when?

If the transfer has been cancelled, please explain why and inform me what plans there are for the further development of the service at its present site.

Yours faithfully,

Tony Britton
Publicity Manager, ME Association

AND HERE'S THE REPLY

Thank you for your email received on 27 July 2015, in which you asked for specific information regarding the M.E / Chronic Fatigue Service.

For information, the University Hospitals of Leicester NHS Trust is one of the largest and busiest NHS teaching Trusts in the country incorporating the General Hospital, Glenfield Hospital and Royal Infirmary. The three hospitals are staffed by almost 11,000 people serving around one million people across Leicester, Leicestershire and Rutland, and a further two to three million people from the rest of the UK who come to us for the specialist services we provide. During 2014/15 Leicester's Hospitals treated 1,229,500 (3,368 patients per day) - 97 more each day than in 2013/14.

Following discussion with colleagues within the Trust's Emergency and Specialist Medicine Clinical Management Group (CMG), I confirm that the Trust holds some of the information covered by your request. The Trust's response is set out after your questions below:-

In 2012, your Trust announced that the specialist service for patients with M.E./Chronic Fatigue Syndrome at the Brandon Unit, Gwendolen Road, Leicester, was to be relocated to the Leicester Royal Infirmary where it would come under the ambit of neurology.

This move has not yet taken place.

Please could you let me know whether it is still the Trust's intention for the relocation to take place and, if so, when? If the transfer has been cancelled, please explain why and inform me what plans there are for the further development of the service at its present site.

The Trust's current Head of Service for Neurology has advised that he is not aware of such a plan and further advises that the service at the LRI has no special expertise in the management of chronic fatigue syndrome.

It is therefore the case that there are no plans currently for a specialist service for ME / Chronic Fatigue Syndrome to re-locate to the Leicester Royal Infirmary.

The service will remain at the Brandon Unit, which is under the management of Leicestershire Partnership Trust, and not the University Hospitals of Leicester NHS Trust (UHL).

With regard to your request for information in relation to the plans for the further development of the service at its current site, this information is not held by UHL, and I would request that you please refer this aspect of your request to colleagues at the Leicestershire Partnership Trust via the following email address: [email address].

Full contact list of ME/CFS hopital based referal services in UK:

http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/

Before taking this further, we would appreciate feedback from people in Leicestershire who have experience of using the current NHS referral service

 

[charles shepherd]

The MEA makes it very clear in the Management section of the purple booklet that NHS referral services should be multidisciplinary and PHYSICIAN led and that they should NOT be situated in mental health units - because ME/CFS is not a mental health condition.

There are NHS referral services for people with ME/CFS that are physician led and where we receive very positive comments from people who go to them.

In the case of the West Midlands, the nearby service in Nuneaton, which is run by an endocrinologist is a good example:

From MEA services directory:

Nuneaton, Warwickshire
George Eliot Hospital, College Road, Nuneaton, Warwickshire, CV10 7DJ.
Tel: 024 7686 5212

ME/CFS service clinic days, Friday afternoons. Waiting time for initial appointment, 13 weeks. Lead clinician, Dr Vinod Patel, with multi-disciplinary team comprising occupational therapist, physiotherapist, nurse and psychologist. Dr Patel is a consultant physician in diabetes and endocrinology and Reader in Clinical Skills at Warwick Medical School.

To read an interview with Dr Patel conducted in 2010 for the ‘ME Positive’ online newsletter, click here: http://www.mepositive.talktalk.net/interview.htm.

Also worth noting that if there is not a suitable NHS referral service nearby the Countess of Mar has established through a House of Lords PQ that people with ME/CFS, or a possible diagnosis of ME/CFS, can be referred elsewhere to an NHS service/consultant of their choice:

http://www.meassociation.org.uk/201...-their-own-choice-of-consultant-24-june-2014/