Have Fibromyalgia Recognised as a Long-Term Illness in Ireland

Have Fibromyalgia Recognised as a Long-Term Illness in Ireland

4 July 2022
Signatures: 1,457Next Goal: 1,500
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Why this petition matters

Started by Emma Seagrave

Fibromyalgia Ireland CLG along with the Fibromyalgia Community in Ireland are coming together to try to create change regarding the Long-Term Illness Scheme. 

What is the Long-Term Illness Scheme?

Under the Long-Term Illness (LTI) Scheme you can get some drugs, medicines and approved appliances for free from your pharmacy.

There is no means test for the scheme.

Currently, the diseases and disabilities covered by the scheme are:

  • Acute leukaemia
  • Cerebral palsy
  • Cystic fibrosis
  • Diabetes insipidus
  • Diabetes mellitus (does not include Gestational Diabetes)
  • Epilepsy
  • Haemophilia
  • Hydrocephalus
  • Intellectual disability (mental handicap)
  • Mental Illness - under the age of 16 years
  • Muscular dystrophy
  • Multiple sclerosis
  • Parkinsonism
  • Phenylketonuria (PKU)
  • Spina bifida
  • Thalidomide conditions

*Information from HSE.ie

At present, in Ireland, Fibromyalgia is listed as an invisible illness, but not a disability or long-term illness.

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, chronic debilitating condition rendering many people unable to work thus rendering them financially dependent on the support of their families. It is neither recognised as a disability in Ireland nor is it recognised on the long-term illness list. The long-term illness list has not been changed in the past 40+ years. Fibromyalgia emerged as a condition which absolutely deserves to be placed on this list. It is an extreme, demanding, expensive illness, and self-management including multi-disciplinary support is expected from the individual patient.

On the HSE website, fibromyalgia is described as a long-term condition that causes pain throughout the body. In 2008, a declaration was passed in the European Parliament that recognised fibromyalgia as a disease. The World Health Organization had, years previously, also recognised fibromyalgia as a disease.

The Disability Act 2005 defines disability as "a substantial restriction in the capacity of the person to carry on 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 and caring for their families. Severely affected patients may be unable to leave their house to walk, to shop or to drive, let alone to work to enable them to gain financial independence. These patients fulfil the definition in the Disability Act 2005 in every sense.

Therefore, we urge the HSE and the Government of Ireland to reconsider our petition to add Fibromyalgia to the Long-Term Illness List, to enable sufferers to acquire adequate medical care and supports. 

It is our goal, to take this petition to the HSE, and the Government of Ireland to try to enforce change for the Fibromyalgia Community in Ireland. 

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Signatures: 1,457Next Goal: 1,500
Support now