[Updates about the Worcestershire NHS ME/CFS service are on our 'About M.E' page]

Today (27 April 2022), the Worcestershire ME Social Group received a copy of this notification (pdf).
 
We understand this letter was sent from Dr M Ling Consultant Physician in Infectious Diseases, Worcestershire Acute Hospitals NHS Trust, to Worcestershire GPs in April 2021.  The letter explained that “the chronic fatigue service run by infectious diseases with consultant input has been decommissioned last year at Worcestershire Acute Hospital, therefore we are unable to take patients for fibromyalgia or chronic fatigue syndrome.”
 
However, Worcestershire GPs have been informed that
“at the time of writing this there is a therapy team with occupational therapists in Worcestershire, care of Malvern Community Hospital, who can deal with treatment of chronic fatigue syndrome and many rheumatology services will have physiotherapists who can deal with fibromyalgia which can be diagnosed normally via the GP using standard criteria which could be discussed with rheumatology if there were any doubt.”
 
The letter also explained
“At the time of writing this there are services at the Barberry in Birmingham, Edgbaston, Bath and Bristol with details on the CFS website which may be able to help where diagnosis and management is needed.”

•  Fibromyalgia  •  Local News  •  N.H.S. 
•  Worcestershire  •  Worcestershire M.E. Social Group

Here is the Hansard information following the debate -
Recognition of Fibromyalgia as a Disability and Fibromyalgia: Diagnosis.
 
Video of debate on parliamentlive.tv (available for download or as audio only).

And, here is the information available prior to the debate -
House of Commons Library: Recognition of fibromyalgia as a disability
"This pack has been prepared ahead of the debate to be held in Westminster Hall on Tuesday 15 January 2019 from 9.30-11am on recognition of fibromyalgia as a disability. The debate will be opened by Toby Perkins MP."

Download the full report Commons Library debate pack - Recognition of fibromyalgia as a disability (PDF, 257.88 KB)

From Hereford Times, 08 August 2015

Hereford Group highlighted on AfME -

www.actionforme.org.uk/get-informed/news/daily-press-summary/1m-philosophy-study-into-cfs

Steps to getting M.E./CFS and FM recognised
In a letter to the editor, the co-chairs of a Herefordshire support group for people with M.E./CFS and fibromyalgia highlight the illnesses, aiming to bring them to the attention of the local people. They mention a parliamentary debate on fibromyalgia in July, which was “an important step forward towards getting the condition recognised,” with key points raised at the debate applying to M.E./CFS as well.
Hereford Times, p 32
06/08/15


Full letter from the Hereford Times

www.herefordtimes.com/news/letters/13581235.No_county_facilities_for_these_illnesses/

No county facilities for these illnesses WE are writing, on behalf of members of the Herefordshire CFS/ME/FMS Group, to highlight Chronic Fatigue Syndrome (CFS), Myalgic Encephalomy- elitis (ME), Fibromyalgia Syndrome (FMS)) and to bring them to the notice of Herefordshire people.

Anyone can develop these conditions at any age. They are life-changing, debilitating, and symptoms for all three conditions can include profound exhaustion/fatigue, widespread severe pain, flu-like symptoms, stomach and digestive problems, memory and concentration loss, disturbed/unrefreshing sleep, intolerances/increased sensitivity and more. Non-sufferers find it difficult to appreciate how ill a person is, because we look normal.

There are no facilities/clinics to help people with these illnesses in Herefordshire, and diagnosis is difficult and can take up to three years.

On July 1, there was a parliamentary debate on fibromyalgia, which is an important step forward towards getting the condition recognised throughout the country.

Key points were raised, which not only apply to FMS, but to ME/CFS as well.

• Education and knowledge of FMS/ME/CFS must be improved among GPs and other health professionals to help improve diagnosis of these conditions.

• Strategies should be promoted and developed within the NHS to provide an integrated and holistic service with patient empowerment as key.

• The NHS should aim to set up a network of clinics across the country, so that patients who have a flare-up have somewhere to go for treatment other than A&E or hospital.

Our group meets on the first Saturday of every month (except January), from 2.30pm at the Aspire Community Hub, Canal Road, Hereford, HR1 2EA. Anyone is welcome to attend or check our facebook page on, facebook.com/CFS.ME.FMS.Group for up-to-date information on meetings.

TONY ADAMS & PAT ADAMS Co-chairs, Herefordshire CFS/ME/FMS Group

July 2015

  Parliamentary debate on the treatment of fibromyalgia   
Alok Sharma leads debate on treatment of fibromyalgia
1st July 2015 Alok Sharma leads a Parliamentary debate on the treatment of the incredibly debilitating condition fibromyalgia and what can be done to improve sufferers’ quality of life.
www.aloksharma.co.uk/content/alok-sharma-leads-debate-treatment-fibromyalgia


Report from FMA UK

Debate in the Parliament on fibromyalgia
www.fmauk.org/latest-news-mainmenu-2/articles-1/1004-debate-on-fibromyalgia-in-the-parliament
30 July 2015 Alok Sharma MP (Reading West) introduced a Westminster Hall debate on fibromyalgia on 1st July 2015 initiated through contact with the Reading fibromyalgia support group.

The debate was attended by only 7 MPs and a junior minister from the Department for Business, Innovation and Skills George Freeman MP. We are pleased that there were representatives from all over the UK. There were 4 members of the public attending, including two representatives from Fibromyalgia Action UK. The relatively low attendance was in part due to the relative lack of notice that was given for the meeting but we hope that a future event will allow us to increase the attendance

However we know from social media activity that there was a good interest from the fibro community across the country with many people watching the debate on Parliament TV live and afterwards as well. The debate lasted 30 minutes, started by the debate organiser, Alok Sharma MP, who gave a 10 minute opening speech. 

Mr Sharma stated that he hoped to raise the profile of fibromyalgia through his debate, which is not a well-known condition by the public.

Jim Shannon (Strangford, Northern Ireland) raised concerns that many GPs are not aware of the symptoms and called for a greater awareness of the condition amongst GPs.

David Jones (Clywd West, Wales) noted that many of the treatment centres were based in England and that for Welsh patients to attend was an extremely bureaucratic process. It has been mentioned that the care pathway is better developed in England than in Wales. The minister present, Mr George Freeman said that he will write to NHS Wales and ask them to consider adopting the care pathway that is being currently used in England.

Mr Sharma went on to speak of the condition and its symptoms. He spoke about the experiences of patients from his constituency and called for knowledge of the condition amongst GPs and healthcare professionals to be improved. He has also called for a strategy of integrated multidisciplinary treatments to be introduced and for “a network of fibromyalgia clinics across the country.”

Mr Sharma has outlined the good practice and the good model of care that fibromyalgia patients in his constituency receive. He praised the multidisciplinary approach provided by Royal Barts Hospital and the Berkshire Pain Clinic. He said that he has written to North West Clinical Commissioning Group (CCG) and asked for awareness of fibromyalgia to be actively pursued amongst healthcare professionals.

Mr Sharma has also raised the difficulties and discrimination at work that fibromyalgia patients sometimes face. He said that it is ‘’completely unacceptable.’’

It was also mentioned that the merger of FMA UK and FibroAction into Fibromyalgia Action UK took place recently and outlined the work the charity does to support patients, for example the provision of national helplines and support to local groups throughout the UK which are supported by a volunteer group of regional coordinators.

To summarise, Mr Sharma has called for three things:
1.  Improved education on fibromyalgia amongst GPs.
2.  Development of nation-wide strategies for integrated holistic services encouraging patients’ empowerment.
3.   Network of fibromyalgia clinics across the country.

The minister George Freeman welcomed the merger of FMA UK and FibroAction which he said would “help give a stronger patient voice to those who are affected.” He spoke about the very important role charities play and the role of social media, which charities can harness to empower patients and speak with one voice.

Mr Freeman went on to outline the difficulties and challenges in diagnosing the condition and responded to the points raised by Mr Sharma. He has said that one of the problems is that there is ‘’no clear diagnostic test’’ for fibromyalgia. He has praised that there is available in some parts of the country a free online course for GPs on musculoskeletal conditions, which also includes information on fibromyalgia. He also mentioned about some treatment tools available to GPs, like the Map of Medicine.

The minister mentioned the progress of appointing Dr Peter Kay, the first National Clinical Director for musculoskeletal conditions. Mr Freeman outlined the Department of Health’s plans to develop specialised person-centred care to 50 million people with long term conditions in England.

With regards to treatment centres, the minister stated that these were spread evenly across England and it was a matter for the devolved administrations to ensure that they also provided such services. Mr Freeman however promised to write to Dr Martin McShane, NHS England's National Director for Patients with Long Term Conditions, and ask for support of development of multidisciplinary specialist centres in England.

Mr Freeman noted that the Department for Health had increased medical research to over £1bn a year however acknowledged that the National Institute for Health Research (NIHR) did not have any fibromyalgia projects ongoing. The Minister has echoed Mr Sharma’s concerns about discrimination at work of employees living with fibromyalgia and he has also stated that this is ‘’completely unacceptable’’. He did not call for any action on this matter. He has stated that currently the protection of employees living with a disability is included in the Equalities Act and that employers are required by law to make reasonable adjustments.

Fibromyalgia Action UK thinks that this is not enough and that work needs to be initiated to educate employers about fibromyalgia and of ways of supporting employees living with this condition. Fibromyalgia Action UK will seek cooperation with bigger organisations working in the musculoskeletal conditions field to obtain and disseminate good practice for employers and to raise this matter separately with relevant ministers. Fibromyalgia Action UK is also working on development of an information booklet for employers on how to support employees living with fibromyalgia.

The issue not outlined by Mr Freeman is that sometimes employers do not accept that fibromyalgia can leave a person disabled and in need of additional support. It is difficult for employees struggling with fibromyalgia to fight their case in these situations. Another problem is when employees have not being diagnosed, as they may not even know that they are protected under the Equality Act. We know that living with fibromyalgia often means that others do not believe that patients suffer from a real and disabling condition as they look fine from the outside. In such situations it is very difficult for employees to fight for their rights at work, especially if employers do not understand the condition, or are discriminatory. Prolonged diagnosis, which runs sometimes to many years, makes a bad situation much worse. Therefore Fibromyalgia Acton UK will take steps to address this issue and will raise it with decision makers.

The debate is still available to view here http://sh.fmauk.org/commonstv1 for those that have not managed to see it as yet.

Regards, FMA UK , Board of Trustees

19 May, 2015   Fibromyalgia Action UK
FibroAction and FMA UK to merge
www.fmauk.org/latest-news-mainmenu-2/press-releases-mainmenu-37/987-fibroaction-and-fma-uk-to-merge


Category: Press Releases
Published on Tuesday, 19 May 2015

The trustees of FibroAction and FMA UK are proud to announce the merger of the two organisations in to a new entity, Fibromyalgia Action UK, as of 1st July this year. It will combine both charities’ expertise, experience and resources to better serve people affected by fibromyalgia. 

Both charities have the same mission and aims, both provide similar services benefiting the same group of people nationally and working as one organisation will enhance this work. 

The merger will take place on the 1st of July 2015 and the new organisation will be called Fibromyalgia Action UK (FMA UK). The name change is subject to regulatory approval. 

All services will remain the same – there will be no change in any of them and all will continue as normal without any break or delay. 

Ella Vine, Chief Executive of FibroAction said:
‘This is a very exciting time for the charities and for all of us in the wider fibromyalgia field. This is a very positive step in the right direction. We are all delighted about it. The charities have a national scope, undertake very similar work, serve the same population, have the same group of supporters and the same aims. It will therefore be good to combine our resources to ensure that people affected by fibromyalgia in the UK receive the best possible support and that our voice is stronger and heard by policy makers. We are thrilled about it.”

Pam Stewart, Chair of FMA UK said:
“The trustees of FMA UK are delighted for FibroAction to be joining with the trustees of FMA UK to be able to move forward together with their support for people with fibromyalgia. This should allow for an even more proactive role in ensuring the best treatment options for fibromyalgia. The new board will have more in depth and an increased range of skills available, which will bring benefit to the fibro community and our shared objectives. ”

The new organisation’s web address will be the same as it is now for FMA UK http://www.fmauk.org/