Yesterday there was a debate at Stormont on Muscular Dystrophy. This debate was presented by Sue Ramsey MLA. Members of the Health Committee made statements and commended the motion.
Gordon Dunne MLA, Robin Swann MLA, Mark Durkan MLA, Kieran McCarthy MLA, Paula Bradley MLA, Maeve McLaughlin MLA, Pam Lewis MLA, Roy Beggs MLA, Mickey Brady MLA, Alex Easton MLA, Steve Agnew MLA and Samuel Gardiner MLA all made statements on the motion.
If they are your MLA, please thank them for contributing to this important debate.
They highlighted the disjointed and inadequate care provided to many families living with Duchenne and Becker Muscular Dystrophy in Northern Ireland. You can watch their statements here.
This debate was sparked by the McCollum Report and the campaigning work of Action Duchenne, the All Party Group and the Muscular Dystrophy Campaign over the Summer.
Specific problems were highlighted:
The Care Advisor post, which has now been vacant for over a year, was discussed. After a bit of confusion, Edwin Poots MLA (the Public Health Minister) clarified that there has been applicants and said that they should be in post ‘this month’. Robin Swann MLA pointed out the commitment for a consultation on how the role would develop and the possibility of making it a dual mandate role with two people.
Kieran McCarthy spoke of the gaps in services and the consequential unneccessary unplanned admissions. Such emergency care costs £2.27million. Even basic services such as wheelchairs, beds and splints are often battled for.
Sue Ramsey MLA highlighted Action Duchenne’s call for an ‘all-Ireland’ Centre of Excellence for neuromuscular conditions in order to provide a one-stop, mulidisciplinary, holistic service as set out in the Standards of Care Lancet 2010 document.
Mickey Brady MLA focused on the lack of knowledge of muscular dystrophy at GP level and called for Recommendation 13 of the McCollum report to be given particular stress.
Recently a family was given diagnosis over the phone after this issue was discussed in previous meetings. It was agreed then that such behaviour should never happen again. Robin Swann MLA made this point and Alex Easton MLA promised that the Minister would look into the issue.
Edwin Poots MLA then made his statement. He announced a steering group for the development of neuromuscular services – recommendation 4. Mr Poots then agreed that recommendation 13 was vital, and that the HSC board would look into arranging group event training for GPs.
However, Mr Poots believed that the neurological conditions subgroup of the long-term-conditions service team provided leadership and that a neuromuscular lead (recommendation 1) would need to be justified.
Another concerning aspect of Mr Poots statement was the long-term succession planning called for in recommendation 14 was seen as feasible due to the training required and the difficulty in getting specialists after positions are left vacant.
Edwin Poots MLA concluded his statement by proposing to respond more fully to the McCollum Report before Christmas and stating that discussions on ‘all-Ireland’ joined up services have begun.
Action Duchenne looks forward to this response and welcomes Mr Poots’ view that services in Northern Ireland must be improved. We hope that the recommendations which Mr Poots agreed with will be put into place hastily and that the McCollum report can act as a starting point for further strides forward in providing the care that people living with Duchenne and Becker Muscular Dystrophy require.
We continue to call for investment and better organisation of services for Duchenne and Becker in Northern Ireland.
- Wheelchair services, housing adaptations and medical devices such as splints must be provided more quickly without the need to fight the system.
- We hope that the current specialists in Northern Ireland will be linked together to create a specialised multidisciplinary team at a specialist centre which can filter down expertise to local health workers, GPs, social workers and schools.
- Additional Care Advisors and a Neuromuscular Lead must be appointed.
- A long term view should be taken, with planning for the hiring or replacing of health workers and clinicians being of utmost importance. The recent Care Advisor situation should never happen again.