Requesting Fibromyalgia to be recognised as a Disability:
Dear ...
I am writing to you today because I am extremely concerned about what people who are living with Fibromyalgia in Ireland have to go through on a daily basis.
Please do take the few minutes to read this letter which is so very important to me, and, I believe, touches the lives of many others.
You may not be familiar with this condition, so please allow me to explain it.
In 1992, Fibromyalgia was formally recognised and included within the WHO International Classification of Diseases.
In July 2017, after the successful efforts of the Patient and Client Council of Northern Ireland, the condition was declared a long-term disability in Northern Ireland. On January 15, 2019, Recognition of Fibromyalgia as a Disability in mainland UK was debated in Westminster.
Fibromyalgia is part of the wider spectrum of chronic pain conditions. It can be described as nerve dysfunction resulting from amplified processing of pain and sensory information. There is no cure for Fibromyalgia. It is a lasting, life-long condition.
Patients experience many different symptoms. The main symptom is widespread chronic pain which is severe in many cases. Patients also experience severe debilitating fatigue. This is not to be confused with being ‘tired’. This fatigue can be compared to what can be experienced during a severe flu-like illness, and it is not relieved by sleep. Another symptom is what is commonly called ‘fibro-fog’. This describes cognitive issues such as memory problems, short attention spans, difficulty with focus and concentration, problems with word-finding, slow speech. Patients often suffer from migraines, restless leg syndrome, irritable bowel syndrome, being unable to regulate their body temperature, and hypersensitivity to sound, smell, light and other sensory information. Depression and anxiety often result as the condition can be very difficult to live with.
It is not known how many people in Ireland suffer from Fibromyalgia, as there is no registry. The establishment of a registry is of utmost importance and financial assistance from the State for this is needed! Globally it is estimated that around 1 in 20 people is affected, however numbers are likely to be higher.
Fibromyalgia is an invisible disability, which makes it often extremely difficult for patients to experience recognition by their families, work colleagues, neighbours, even spouses and partners.
Many patients are unable to work and depend on financial support. They, however, face enormous difficulties when applying for social welfare benefits. This must urgently be addressed, as it causes enormous stress, which is detrimental to the condition, causing a vicious cycle.
Fibromyalgia is a life-long chronic debilitating condition, rendering many people unable to work, thus financially dependent on the support of their families. It is neither recognised as a disability in Ireland, nor is it listed on the long-term illness list.
The long term illness list hasn’t been changed for the past 40 years but Fibromyalgia has emerged as a condition that absolutely deserves its place on this list. Fibromyalgia is an extremely demanding illness, as self-management including multi-disciplinary support is expected from the individual patient (see https://www.hse.ie/.../fibromy.../treating-fibromyalgia.html) I can’t understand how patients are expected to fund these treatments advised by the HSE themselves.
On July 11, 2012, a group of Fibromyalgia representatives briefed the Health Committee in Leinster House on Fibromyalgia. On January 24, 2018, FibroIreland held a presentation on Fibromyalgia in the AV room in Leinster House. Concerns might have been taken on board, however nothing has happened or changed.
Until recently, the Department of Social Protection had Protocol 6 accessible online. Protocol 6 discussed Chronic Pain and Fibromyalgia in detail over 63 pages. One part mentioned ‘Fibromyalgia is a chronic condition. P42 A.7 Prognosis states, ‘Fibromyalgia is a chronic condition. Although symptoms may vary in intensity, the condition is unlikely to completely resolve.’ Protocol 6 has now disappeared, however FibroIreland (http://www.fibroireland.com/)have a copy of it which can be made available to you if you would like to email them at info@fibroireland.com.
The Disability Act 2005 defines ‘Disability’ as: ‘A substantial restriction in the capacity of the person to carry out a profession, business or occupation in the State or to participate in social or cultural life in the State by reason of an enduring physical, sensory, mental health or intellectual impairment’.
Fibromyalgia can render patients incapable of work, leading a normal social life, caring for their families. Severely affected patients are unable to leave their house to walk, to shop, to drive, let alone to work to enable them to gain financial independence. These patients fulfil the definition of the Disability Act 2005 in every sense. I ask you for your support to have Fibromyalgia classified as a disability. This would give sufferers access to much needed support, care and treatment options.
I kindly ask for your help and support in this matter.
I look forward to your response
Regards.......