making muscle wasting history

Last night I attended a meeting at the Welsh Assembly of the Cross Party Neuromuscular Group.

There were presentations from
Nic Bungy MDC,
Jan William, CEO Cardiff and Vale LHB and Executive lead for neuromuscular care in Wales.
Rachel Salmon Neuromuscular care advisor, in post since Sept.

The meeting was chaired by Dr Dai Lloyd AM.

The objectives of the meeting was an update on the work done since the Thoms Report was published last July.

Jan WIlliams:

Work is on going to imporve neuoromuscular services across Wales.
Discusssion are on going across all Health Boards to develope Neuromuscular networks in North and South Wales.
We have one new care advisor in place for South East Wales. A care advisor for South West Wales starts in March and the job description and post for North Wales is going to be advertised soon. North Wales being slightly different because of its links with Liverpool Alderhay, The Walton and Oswestry.
There is currently a review of neuormuscular services in Wales which will allow better succession planning. This reiew will also map Welsh services and produce a guide to neuromuscular service for clinicians to refer to. The review will also indicate the number of patients and families who need access to neuoromuscular services. Which in turn should allow more effective commissioning of services.
There is also a new post for a Welsh Neuromuscular specialist physiotherapist. Whose role will be to trian physiotherapist in the specialist needs of neuromuscular patients. This post is going to advert very soon.
The last point made was that there are no obsticals in place to Welsh patients going to England, or where ever. To recieve specialist care if that care is not avaliable in Wales. IE If a DMD family wants a review at Great Ormand St Hospital they will be able to. This point was also echoed by Welsh Assembly members present.

Rachel Salmon told us about her first very busy few weeks in post. She has been meeting with patients, and clinicians to find out what services are needed and what services are out there. As the role is new it is really about learning and networking so that she is able to assist all concerned. She and the other new care advisors will be contactable by phone/answer phone although this is currently being organised !
Having meet with a number of patients and families there are a wide range of needs. A lot of people need better access to social services and OT services. There have been a few patients who have been 'found' who appear to have been missed and are now getting reviewed. It is all a work in progress. It is hoped that the mapping of services will allow better access becuse clinicians will know what services are out there.

Questions to the panel:
It was questioned about the speed at which the specialist neuromuscular physio will be in post and able to affect change across Wales.
The panel highlighted that this was a training role and it was aimed at improving the physio care already in place. It must be rembered that current physiotherapit are already highly trained. I suggested that as patients and families we go back to our physio contacts and make them aware of this new resourse.

Another questioned the lack of resourses for repsite care for patient and family.
The panel suggested that there were ways and means out there but agian it appears that clinician do not know about them or how to access them. It is hoped that the new care advisor roles will address this.

Another question highlighted the indifference in which the DMD heel prick tet is delivered. There remains a lack of knowledge and understanding of the potential ramifications of a postive result. There can be no informed consent if no information, or factually incorrect information is given. Jan Williams said she would look into this.

Another questioned the continued need for a specialist centre in Wales. Again the answer was for the current time SOuth Wales will be working out of 2 hubs Cardiff and Swansea with the aim to increase satilite service. Norht wales is slightly more difficult because lots of patients go to England. However Jan Williams did suggest that with the mapping of services and continued review it may be possible to build the case for the need because of the amount of patient and therefore Welsh health money going to England. Personally I think that this is unfortunalty a long way off. (But I am happy to be proved wrong.)

All in all it was a positive meeting. It is good to see thing moving forward.

Dr Dai Lloyd AM as always appears to be a good force to keep things moving forward.
Jan Williams seems very keen to improve services.
Rachel Salmon will always be an asset to Welsh neuromuscular services

There will be a meeting in Wrexham for patients who live in North Wales to attend. I think it is the end of Feb.