NEWSLETTER

fast access to our latest newsletter just click on it here and download as pdf.

iss59

or you can always catch up with previous issues in the 'news letters' under the 'Information' menu

Don't Forget

check out the leaflets in the 'useful leaflets' section under the 'Information' menu


Disclaimer

Information on this and linked website does not necessarily infer endorsement by the Fibromyalgia Support for Worthing and West Sussex.
Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional.

Registered Charity 1042582

affiliated with FMA UK

webmaster Pete MacKean

January 2014

News and Events

no10
Statement from 10 Downing Street FMS Clinics
e-petition reply - 3 September 2007

We received a petition asking:

"We the undersigned petition the Prime Minister to improve clinical diagnosis, medication and provide clinics for fibromyalgia patients."

Details of petition:

"Clinics are needed on the NHS for fibromyalgia syndrome for diagnosis, treatment and medication. The medical profession need educating about this condition which affects 5% of the population and their families. The clinic can run alongside ME clinics as the debilitating condition is identical but more pain is present. Drs should be trained to identify FMS at an early stage as some patients have to wait 20 years to get this. A simple programme can be used for diagnosis as symptoms vary from patient to patient. Most are unable to work due to FMS and help is needed for this also as treatments are expensive and unaffordable to most patients, therefore the NHS which we have all paid into could be in place nationwide, not just privately or in London but locally.

WHEN IN RECOVERY PATIENTS WILL BE ABLE TO WORK INSTEAD OF BEING A BURDEN TO THE NHS BUT NEED THIS HELP TO GET THERE."

The Government' response

Local NHS organisations are responsible for commissioning services to meet the health and social care needs for those living with long-term medical conditions, such as fibromyalgia. They are best placed to know what level of services are required to meet the healthcare needs of their local populations. This may include the setting-up of specialist clinics specifically for those with fibromyalgia or treatment within existing facilities such as pain, chronic fatigue syndrome/myalgic encephalopathy, or rheumatology clinics.

In August 2003, the Chief Medical Officer (CMO) issued a newsletter to all doctors in England about the dissemination of information on fibromyalgia. The CMO acknowledged the condition and the extent to which it affects the population, and raised awareness of a leaflet produced by the Medical Advisory Board of Fibromyalgia Association UK about fibromyalgia, which has now been made available to all GP surgeries throughout the UK. The leaflet offers guidance on the main symptoms, diagnosis and treatment of fibromyalgia together with a brief summary of the current ideas for the underlying pathogenesis.

The National Library for Health Clinical Knowledge Summaries website, www.cks.library.nhs.uk. includes detailed information for health professionals on fibromyalgia. This website also includes a patient information leaflet that GPs can download for those newly diagnosed with this condition.

The Government is committed to ensuring better services for people with musculoskeletal conditions such as fibromyalgia. In October 2006, Andy Burnham launched The Musculoskeletal Services Framework (MSF) -A joint responsibility: doing it differently. The MSF aims to improve assessment, diagnosis and treatment for people with musculoskeletal conditions.

The MSF sets out evidence-based best practice guidance and promotes redesign of services and facilities, maximising the contribution of all healthcare professionals. The goal is to ensure better outcomes through a more actively managed patient pathway, with explicit sharing of responsibility agreed between all stakeholders - all health and social care clinicians and managers, the voluntary and community sectors, patients and the public. As part of an integrated service, multi-professional interface clinics are the keystone of the framework. The MSF is designed to ensure:

  • better care and outcomes for people with musculoskeletal conditions, providing them with access to effective, timely services, and enabling them to fulfil their optimum health potential and remain independent;

  • closer working between secondary and primary care, with shared responsibility for patient flow, developing better use of resources, agreed care pathways, protocols, thresholds and clinical audit, to ensure that people who need secondary care access the services more efficiently and that those who do not, have access to other therapeutic options;

  • and reduced outpatient waits, an 18-week target for referrals from GPs to the start of hospital treatment, and a higher percentage of listed patients having operations - a realistic opportunity for organisations to manage patients and to meet Patient Access Targets and deliver quality patient choice at referral.

The Clinical Standards Advisory Group (CSAG) has recommended that health authorities and PCT commissioners should review local provision of services for people with chronic pain, looking particularly at the provision of more specialised treatments on a networked basis. Services for Patients with Pain: Report of a CSAG committee chaired by Professor Alastair Spence, which can be viewed on the Department of Health's website (new window), shows that many NHS Trusts have developed excellent services for people with pain. We recognise, however, that more needs to be done in some parts of the country to raise standards, and we expect action on CSAG's recommendations to reduce the large variation in the access to care that exists across the NHS. Implementation of the CSAG recommendations rests mainly with local NHS Trusts and commissioners.

Petition update

recognise specifically that chronic pain and chronic fatigue cause incapacity for work

This petition is now closed, as its deadline has passed.

We the undersigned petition the Prime Minister to recognise specifically that chronic pain and chronic fatigue cause incapacity for work.

Submitted by Mr Julian R Yon – Deadline to sign up by: 06 June 2010 – Signatures: 843

More details from petition creator

Sufferers of chronic fatigue syndrome, fibromyalgia, hypermobility syndrome, and other such chronic conditions can go through periods when their ability to function is severely impaired. The current rules for claiming ESA do not recognise the validity of myalgia, arthralgia, malaise or severe sleep disruption. This causes distress and humiliation for sufferers who are often forced to appeal decisions, or to work when unfit thereby causing themselves further health problems. We ask that this family of incapacities be correctly recognised so that people who experience chronic pain and chronic fatigue can claim ESA when they need it.

http://petitions.number10.gov.uk/chronicpain/

Government response

We recognise that fatigue and pain can severely limit someone's capability for work, and this is reflected in the Work Capability Assessment.  Because it is important to take account of fluctuating symptoms when assessing capability for work, the Work Capability Assessment is not a snapshot view of a customer’s ability to undertake day-to-day activities at any single point in time, but rather an assessment of their ability most of the time. If a customer is unable to complete an activity repeatedly, reliably and safely, then they are considered unable to complete it at all.   

The healthcare professionals conducting Work Capability Assessments are trained in disability analysis and are given particular training in assessing fluctuating conditions. They are expected to be mindful of the fact that many illnesses produce symptoms that vary in intensity over time from mild to severe, and are instructed not to base their opinion solely on the situation as observed at the medical assessment.


totop