A motion has been forwarded by Deputy Gino Kenny, undersigned by 10 TDs on the issue of Fibromyalgia and ME with the hope that more TDs will sign off on it. Gino has worked closely with people with Fibromyalgia and ME to produce this motion. All People Before Profit TDs have signed it, as have their colleagues in Solidarity and a number of other TDs.
Deputy Gino Kenny, hosted an AV room presentation about Fibromyalgia and ME last year. On the 21st of February Deputy Kenny held a press conference at which people with Fibromyalgia and ME spoke about their own experiences of living with these chronic conditions and the current situation in relation to diagnosis, management and treatment. They also spoke about their difficulties accessing disability allowance and other social welfare payments.
Deputy Kenny said; “This motion is intended to raise awareness about these conditions and instigate a debate in the Dáil chamber. I hope that this motion will encourage change in regards to availability of specialist treatment, social welfare access and understanding of the reality of these conditions.
Among other recommendations, the motion calls on the government to develop a model of care based on international best practice, establish an effective and sustainable model of care to diagnose, manage and treat fibromyalgia, and to roll out a comprehensive education programme for those working in social welfare dealing with people with chronic pain of all types.
The motion doesn’t have any statuary power if passed, meaning the government won’t be mandated to act. The main intention here is that the issues at hand get highlighted, and to make visible the invisibility of chronic pain and fatigue.”
It is estimated that 90,000 to 180,000 are affected by Fibromyalgia in Ireland.
Fibromyalgia is a debilitating condition with chronic pain and fatigue being primary features.
There are no nationwide specialist facilities or comprehensive treatments available.
Those living with Fibromyalgia have encountered difficulties when trying to access social welfare. Instead of getting vital support at a crucial juncture in their illness experienced being refused, stressed and stigmatised.
The condition is significantly misunderstood.
The majority of those affected by Fibromyalgia are women. Ratio is 6:1.
A National Registry of Chronic Pain Syndromes and clinical guidelines for different types of chronic pain as per ICD-11 Codes and IASP WHO Guidelines be drawn up to assist Medical Practitioners to better understand different types of Chronic Pain Syndromes and to be able to differentiate according to WHO International Guidelines
The delivery of care is limited by the lack of commitment to the diagnosis and treatment of fibromyalgia in addition to the deficiencies in resources currently available in community, primary and secondary care.
Delivery of care is also hampered by the absence of clear guidelines for management and the lack of opportunity to develop integrated care pathways across primary and secondary care. Many people with Fibromyalgia suffer from chronic pain.
Access to Psychological Therapies is a paramount need in Health Service Development together with improved access to all multidisciplinary health treatments. Patient education and self-care is a vital aspect of management of Fibromyalgia and optimal benefits are obtained when Fibromyalgia sufferers acquire skills in helping reregulation of the autonomic nervous system and other systems as well as pain and stress management skills.
Those living with Fibromyalgia have access to a recognised Pain Programme and Pain Psychologist. Autogenic Training, Mindfulness and Yoga can be especially helpful as part of comprehensive Cognitive Behavioural Therapies as well as appropriate exercise to improve mobility and function, together with dietary adjustment. In some cases the person with Fibromyalgia is able to return to work.
Fibromyalgia should be recognised as a disability by the state for people with severe symptoms who have the condition on a long term basis which has proved unresponsive to interventions.
In these cases alternative treatments such as access to medicinal cannabis should be explored. Access to medicinal cannabis through the Cannabis Access Programme should be considered. Reliance on opioid based medicines is not desirable
Calls on the Government to-
Establish an effective and sustainable model of care to diagnose, manage and treat fibromyalgia.
The ending of prescription charges.
Reduce/remove the monthly limit on the cost of medications for non-medical card holders.
Develop a model of care based on international best practice.
Implement a strategy to set up a framework where those living with fibromyalgia and myalgic encephalomyelitis (ME) are clearly recognised.
Conduct a review of the long term illness scheme – it has not been updated since 1970 (49 years).
Carry out a dedicated and rigorous review of the underlying causes of the condition.
Roll out a comprehensive education programme for those working in social welfare dealing with people with chronic pain of all types