On Tuesday 5th March, I attended the All Party Group (APG) meeting in Northern Ireland. This meeting was chaired by Conall McDevitt MLA, Robin Swann MLA and attended by Pam Brown MLA and Kieran McCarthy MLA. Representatives from the Belfast Trust were also in attendance alongside families and people living with Muscular Dystrophy.
This meeting followed the response to the McCollum report released on the 13th February.
The response had a number of very positive elements. The response named Michelle Tennyson, the Assistant Director of Allied Health Professions and Public Patient Involvement at the Public Health Agency, as the Northern Ireland lead for muscular dystrophy and related neuromuscular conditions. This is a big step forward to ensure equitable and accountable development of services.
A neuromuscular registry has already started being set up and a Duchenne Muscular Dystrophy ‘patient pathway’ is going to be developed for patients and their carers.
Further interesting points include a clinical network which will incorporate Neuromuscular conditions. This is being set up to improve links with specialist neuromuscular centres. Increased clinical time and transition workers are also recommendations which have been given support.
The APG on Muscular Dystrophy met to discuss this response and the Welfare Reform changes from Disability Living Allowance (DLA) to Personal Independence Payments (PIP).
The response was generally welcomed and the work of Conall McDevitt MLA, Robin Swann MLA and other parliamentary supporters, as well as the patients and families who attended campaigning events, was recognised. However, there were areas where concerns were raised.
Recommendation 11 highlights the NICE accredited Standards of Care. The response accepts the possibility of moving them from ‘best practice’ to actual clinical guidelines. Janet Bailie pointed out that these Standards were created by the experts in DMD and should be followed where possible.
The response to Recommendation 5 discusses the extra links between Centres of Excellence in England and healthcare professionals in Northern Ireland, with the objective of filtering down expertise. However the structure of such links were seen as quite vague.
Recommendation 15′s response was also seen as a dissapointment, with the lack of integration and communication between Health Trusts not being fully addressed.
The main focus of the discussion centred around recommendation 12 on wheelchair services. The continual lack of improvement in wheelchair services, and numerous stories of large waiting times and having to battle the system, is an unacceptable state of affairs. The response to Recommendation 15 does not acknowledge these problems.