Wednesday 1 February 2012
Campaigners highlight need for Welsh neuromuscular network with Health Minister
Campaigners met with Welsh Government Health Minister, Lesley Griffiths AM, yesterday to discuss the need to develop a neuromuscular network in Wales. They were supported at the meeting by Bethan Jenkins AM, Chair of the Cross Party Group on Muscular Dystrophy in the Welsh Assembly.
Dr Gareth Llewelyn, a Consultant Neurologist from Newport, outlined to the Health Minister that a website network is currently being developed to bring together the key neuromuscular health professionals that will enable a more co-ordinated approach to specialist neuromuscular care. The Minister reassured campaigners that space to accommodate health professionals should not be a problem.
Dr Llewelyn is also in the early stages of planning to undertake an audit of unplanned emergency admissions to hospital for neuromuscular conditions. This follows on from the Muscular Dystrophy Campaign's Invest to Save: Improving services and reducing costs in Wales report launched at the Welsh Assembly in November 2011.
Care Advisors play a vital role in the neuromuscular network and campaigners emphasised to the Minister that the three Care Advisor posts need to be made full time. The Minister commented that the analysis of the Care Advisors' caseloads commissioned in October is still ongoing and that Care Advisors' travel would be factored in to the figures produced.
Specialist physiotherapy was highlighted as a gap in service provision that must be addressed urgently. Progress has been made to improve paediatric specialist neuromuscular physiotherapy but campaigners highlighted to the Minister that specialist adult physiotherapy is non-existent.
The Minister expressed her concern when Jon Taylor, whose 17 year old son Ross has Duchenne muscular dystrophy, said that Ross faced the prospect of an uncertain level of specialist physiotherapy support when he finishes school, where he receives physiotherapy twice a week at present.
There was consensus at the meeting that, in the light of the newborn screening test for Duchenne muscular dystrophy, there is an urgent need to improve specialist care and support to ensure that diagnosis is made as early as possible to enable families to plan for the future and to put in place anticipatory care arrangements.
For more information about the campaign to improve neuromuscular services in Wales, please get in touch:
020 7803 4839
campaigns@muscular-dystrophy.org
