Dáil Éireann Debate, Tuesday - 11 July 2017
410. Deputy Róisín Shortall asked the Minister for Health further to Parliamentary Question No. 1078 of 20 June 2017 if he will direct the relevant national clinical programme office to assess the practices at a clinic (details supplied) as a potential model of best practice; and if he will make a statement on the matter. [32388/17]
Amharc ar fhreagraDeveloping a dedicated clinic for diagnosis and treatment of Myalgic encephalomyelitis (ME) has many challenges. The HSE has advised that within the model of care for the National Clinical Programme for Neurology, the development of tertiary services/clinics are advocated in conditions with lower prevalence, where there isn’t the volume to support development of expertise across a larger number of sites, for example specialist clinics in Motor Neurone Disease.
The suggestion of developing one dedicated clinic to oversee the care of 12,000 ME patients may not be an answer to supporting patients appropriately. One clinic supporting this number of patients would inevitably result in significant waiting times of patients, both new and review, and may not allow the service be responsive to the needs of patients with ME. This has reportedly been the experience in the Stora Sköndal ME/CFS clinic in Sweden, where they had to refuse referrals with demand outweighing capacity.
At present, it is difficult to determine how many people with ME are being seen in Neurology OPD services nationally.
Information on waiting times per speciality and per hospital is all that is currently available to the neurology programme, and as such we do not have accurate information on the demand on neurology services or indeed other specialties including:
- Rheumatology;
- Pain Specialists;
- Endocrinology;
- Immunology;
- Cardiology etc.
An ME clinic would need to have representation from across these speciality areas, therefore, to have a clinic led or delivered by one speciality may not meet the needs of patients appropriately. While the need for accurate diagnosis is crucial, it is acknowledged that the ‘hospital’ based services represent a very limited aspect of the overall patient journey and the focus going forward is on how the whole health service, not only hospitals, support people in managing their health and well-being.
