Dáil Éireann Debate, Tuesday - 3 October 2017
394. Deputy Thomas P. Broughan asked the Minister for Health if his Department has examined the need for a specialist clinician in the Dublin region to treat Ehlers-Danlos syndrome; and if he will make a statement on the matter. [41575/17]
Amharc ar fhreagraThe National Clinical Programme for Rheumatology, NCPR, has recently completed a significant piece of work in delivering a model of care document for rheumatic and musculoskeletal disorders which has is at final stages of approval by the HSE. This model aims to ensure that the rheumatology patient is seen, assessed and treated by the right person, in the right place and in the timeliest manner. For this reason, the Programme welcomes stakeholder feedback and comments from patients, their families and patient support groups all of which are taken into consideration in its service design.
The Model of Care for Rheumatology recommends minimal staffing standards, based on population, for each department in order to provide appropriate treatment to patients with rheumatological diseases. Publication of this model of care is a priority for the NCPR as it will shape the overall treatment and management of all musculoskeletal disorders.
Based on this model of care, the NCPR plans to develop disease specific pathways for all rheumatological disease groups which will include Ehlers-Danlos Syndrome as part of hypermobility diseases.
The most common form of EDS is hypermobility of the joints and requires management by physiotherapy and primary care but does not usually need specialist input. The most severe and very specialist cases are rare (1 per 100,000 live births) and are usually managed by paediatric rheumatologists based at Our Lady’s Children’s Hospital Crumlin, OLCHC. Based on these figures the total number of patients with severe EDS is likely to be in the order of 20-40 patients nationally.
The NCPR have identified the need for additional Consultant Rheumatologists and multidisciplinary team staff at OLCHC to improve access to paediatric rheumatology services for all children with musculoskeletal disease. This will provide a means to deliver improved care for EDS sufferers.
The Paediatric Consultant Rheumatologists in Ireland based at OLCHC have specialist training in the management of all types of rheumatic and musculoskeletal disorders. They are supported by a multidisciplinary team and have access to other relevant consultant specialists needed for the care of EDS sufferers.
Adult rheumatologists are also trained in the diagnosis and management of EDS and care for adults with EDS. EDS education is part of continuing medical education meeting curricula, attended by adult rheumatologists and EDS update was the subject of a full lecture at the 2015 meeting of the Irish Society of Rheumatology although education and awareness on diagnosis and treatment of hypermobility disorders could be further improved at primary care level.
Despite the fact that the HSE’s musculoskeletal physiotherapy initiative has proven to be one of the most successful service improvement initiatives coupled with recent increase in nursing staff, there is still a bottleneck in terms of access for those in need of a consultant review. This is due to the current deficit in consultant numbers which has a significant impact on service availability demonstrated by the all-time high waiting list despite the novel initiatives in place.
Therefore, the NCPR are of the opinion that the need is not for a specialist clinician in the Dublin region to treat EDS rather, an increase in consultant rheumatologists nationally which will ensure that the national population can access the service seeing the right person at the right place at the right time.
