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ME sufferers get care closer to home

17 October 2013


A local pilot service for ME sufferers, which was launched in May is making a real difference to people’s lives. 

Patients living with chronic fatigue syndrome (CFS) also known as myalgic encephalomyelitis (ME) can now receive their care closer to home instead of having to travel to hospitals out of the region.

Since its launch, 68 patients have been referred to the service for assessment and diagnosis by specialists from the new consultant-led multi disciplinary team (MDT) operating from the Disability Resource Centre in Dunstable.

Twenty-five of these patients have started a treatment plan tailored to their needs and to help reduce their symptoms. Treatments such as cognitive behaviour therapy (CBT) and a structured exercise programme called graded exercise therapy (GET), provided in communities close to where patients live, are enabling patients to return to everyday activities. 

Alex Smallwood, GP at Goldington Avenue Surgery in Bedford, said: “The service is fantastic news for our patients who suffer with CFS/ME. It’s previously been hard for GPs to access a joined-up service for these patients. This service is essentially ‘under one roof’, which means patients can access all of the support services concurrently at a pace that suits them, rather than in stages.

“Our patients are already starting to benefit from the service and finding that their health and quality of life is improving as a result.”

ME service works for Jeanne

Jeanne, from Bedford, who has suffered with ME for more than two years has benefited from the new service. She said: “CFS/ME was having a massive effect on me and my life. I was constantly tired and finding it difficult to do simple tasks and get around and out of the house. I didn’t have the energy to think properly and was constantly forgetting things.

Jeanne’s GP referred her to the new CFS/ME service for an assessment in June and she is now getting the support and treatment she needs to help her get back to day-to-day life. 

Jeanne continued: “The new service in Bedfordshire has been a godsend. Everyone in the team has been fantastic; they have been there to support me and answer my questions. It has been reassuring for me to know that I’m not alone. They have really understood my condition and what I’m going through.

“Having a single team of health professionals to address my needs as a whole has helped me achieve my goals and made it so much easier to get the help I need.”

Jeanne’s treatment is continuing. Her mobility and outlook on life have improved and she is starting to return to doing everyday activities.

The Bedfordshire service, commissioned by Bedfordshire Clinical Commissioning Group, is one the first in the country to use a collaborative approach to treating CFS/ME.  Local providers of the service include Horizon Health, Bedford Hospital and the South Essex Partnership Trust (SEPT).

CFS/ME, once dismissed as ‘yuppie flu’ or thought to be ‘all in the mind’, is now recognised as a serious illness that devastates the lives of many. The condition affects more than 1000 people in Bedfordshire.

John Chisholm, co-ordinator of Bedfordshire ME Support Group, said: “ME is a serious debilitating and distressing condition which affects the lives of many local people. This new service is now providing them with easy and quicker access to the specialist care and help they need.” 

Patients can be referred to the service by their GP.  

Ends

Notes to editors

  • Studies show that quality of life for people with ME/CFS can be worse than that in the later stages of cancer or AIDS 3. A report in 2002 for the Chief Medical Officer, Liam Donaldson established the impact the illness has on patients and the economy. As a result, start-up funding was provided in 2004 for a network of Local Multi-Disciplinary Teams in locations all over England. Some were continued with local funding but this Bedfordshire service is the first completely new MDT to be set up with local funding. The initial pilot is expected to provide care plans for a minimum of 60 patients in its first year and become a permanent service in 2014. It is hoped that it will be a model, not just for other new CFS/ME services elsewhere but also for other neurological conditions.
  • Bedfordshire Clinical Commissioning Group is responsible for planning, organising and buying the majority of healthcare for the people of Bedfordshire.  It is run and led by local clinicians, including GPs, nurses and hospital doctors.
  • Bedfordshire ME Support Group holds meetings in Bedford and Luton on alternate months.

 

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