Written answers
Friday, 6 September 2019
Department of Health
Health Services
Tom Neville (Limerick County, Fine Gael)
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964. To ask the Minister for Health his plans to address the lack of specialist consultants for myalgic encephalomyelitis, ME, patients; and his views on whether ME is a multi-system disease involving many areas with many debilitating symptoms which require patients to see many consultants and incur large costs. [35519/19]
Tom Neville (Limerick County, Fine Gael)
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965. To ask the Minister for Health if the HSE will be instructed to develop a clear pathway of care for ME patients with prompt access to specialists and treatments. [35520/19]
Tom Neville (Limerick County, Fine Gael)
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966. To ask the Minister for Health if he will designate ME as a reportable health condition in order to obtain robust official collection of data on the number of children, young persons and adults with the condition and the degrees of severity of the condition; and if he will make a statement on the matter. [35521/19]
Tom Neville (Limerick County, Fine Gael)
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967. To ask the Minister for Health the criteria used here to diagnose ME as described under G.93.3 WHO International classification of diseases, 10th provision (ICD/10); and if he will make a statement on the matter. [35523/19]
Tom Neville (Limerick County, Fine Gael)
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968. To ask the Minister for Health if he will request the HSE to develop guidelines for ME relevant to Ireland; and if contemporary research will be referenced rather than leaving it to the United Kingdom. [35524/19]
Tom Neville (Limerick County, Fine Gael)
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969. To ask the Minister for Health if the HSE will be requested to commence implementing the international consensus criteria for ME in order that persons with the condition can receive a clear diagnosis as quickly as possible. [35525/19]
Tom Neville (Limerick County, Fine Gael)
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970. To ask the Minister for Health if the HSE will update its diagnostic and treatment procedures for persons suffering with ME to reflect best international practice; if the lack of specialist support within the HSE will be addressed for those with the condition; and if he will make a statement on the matter. [35526/19]
Simon Harris (Wicklow, Fine Gael)
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I propose to take Questions Nos. 964 to 970, inclusive, together.
Chronic fatigue syndrome (CFS) / myalgic encephalomyelitis (or encephalopathy) (ME) is a complex debilitating disorder which is characterised by severe fatigue accompanied by a range of other symptoms.
There is currently no known, specific, medical diagnostic test to determine or confirm a correct diagnosis of ME and no specific treatment which works for all sufferers is currently available. As a result clinical assessment and the design of care plans need to be tailored to the individual patient. There are assessments and tests which can be carried out in primary care settings by a General Practitioner. Specialised tests may be required when considering and ruling out other diagnoses.
Treatment for ME is tailored to address the varying symptoms presented by those affected by ME. In general, these treatments are delivered within the context of primary care, with referrals into secondary care for specialist interventions in the areas of Neurology, Rheumatology, Pain Specialists, Endocrinology, Immunology, Cardiology, etc. Different patients, depending on their primary symptoms, will require different Consultant input. The challenge in relation to ME is that it does not sit within one specialty, but crosses a number of specialties, with patients frequently attending different Consultants for management of their symptoms as and when they arise. Consultants are well used to coordinating the care of patients that require the input of their colleagues and other members of the multidisciplinary care team.
In order to allow for the timely access to services for patients, work is under way as part of the implementation of the Strategy for the Design of Integrated Outpatient Services 2016-2020, specifically as regards addressing how and where the patient is treated and the classification of referrals with corresponding clinically recommended time-frames. Consideration is also being given to condition specific referral forms. This work should see significant improvements with respect to access to appropriate services.
There are two general categories of disease as “reportable health conditions” – Infectious Diseases and Cancer. There are no plans to add this condition to the list. However, any patient is eligible to apply to the Drugs Payment Scheme or to apply for a Medical Card. In addition, under the Drug Payment Scheme, no individual or family pays more than €124 a month towards the cost of approved prescribed medicines. The scheme significantly reduces the cost burden for families and individuals with ongoing expenditure on medicines.
People who cannot, without undue hardship, arrange for the provision of medical services for themselves and their dependants may be entitled to a medical card or other state financial supports. In the assessment process, the HSE can take into account medical costs incurred by an individual or a family.
People not eligible for a medical card may still be able to avail of a GP visit card, that covers the cost of GP consultations.
The Canadian Consensus Guideline outlines that for consideration of a diagnosis of ME, a person should have a number of symptoms. There are assessments/tests that can be carried out in primary care setting by the General Practitioner. Specialised tests may be required when considering differential diagnoses.
The Health Service Executive does not rely entirely on research from the UK for this or any other condition. Every effort is made to access relevant evidence based research as it becomes available. The HSE prioritises the development of guidelines based clinical need and in the context of available resources.
I have asked the HSE to consider the service matters raised by the Deputy and to respond directly to him.
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