making muscle wasting history

http://www.muscular-dystrophy.org/assets/0001/7692/Thomas_Report.pdf

http://www.itv.com/wales/specialist-care-call03500/

Today I went to the Welsh Assembly for the launch of The Thomas Report: Acces to Specialist Neuromuscular Care in Wales.
Cross Party Group on Muscular Dystrophy.

The full document can be viewed following the link above. I have also included a link to a news item.

The day started with a photo call and interviews in front of the Senedd.
We then moved inside for the official presentation of the document to the Minister for Health. The meeting as opened by Dr Dai Lloyd AM Chairman of the Cross Party Group. He thanked all those involved, clinicians, experts, patients and family members. He then handed the room over to Ray Thomas.

Ray has campaigned for over 20 years for better muscualar dystrophy care in Wales. He gave a really emotional speech. He talked about this document as a new starting point for muscular dystrophy care and called on all those present to work together to ensure the proposals work and ensure the WAG stays true to its word.

The official presentation then took place with the document handed over to Mrs Edwina Hart AM, Minister for Health. She then spoke giving her thanks to Ray and Dai Lloyd. She then said that she gives her support to the document and its recommendations. But it will take time. (!!!)

Robert Meadowcroft Chief Exec MDC then thanked everyone for their help. He then reminded of the need to keep raising money for research.

The meeting was then spoken to by Dr Mark Rogers, Consultant Genetisist, UHW.
He hoped that the recommentdations would be taken and not watered down. He also hoped that the recommendations would be serviced by new money. He aslo called for WAG to look at ways of forming a specialist centre to allow Welsh patients to partcipate in trials with out travelling to London.

The meeting as then closed by Nick Bungey from MDC. He also thanked everyone and suggested further work and a review in October.

The main recomendations of the report are:

Recommendations

1. The Welsh Assembly Government and all NHS organisations in Wales define
and fully recognise neuromuscular services as specialist services.

2. The Welsh Health Specialist Services Committee plays a central role in
planning these specialist services across Wales. Neuromuscular specialists,
in conjunction with the Health Boards and patient groups, would develop
suitable pathways and protocols. Regular review and audit processes would
be facilitated.

3. The Welsh Assembly Government sets up a Managed Clinical Network
using existing expertise to ensure gaps in service provision are filled
immediately and that the recommendations of the Neurosciences review
are implemented.

4. The Welsh Assembly Government implements a structured long-term
succession planning system for key neuromuscular posts to address the
alarmingly inadequate provision that currently exists.

5. The Chief Executive of Cardiff and Vale University Health Board, as the
nominated Chief Executive lead for muscular dystrophy in Wales, facilitates
a series of discussions with patient representatives, clinicians and the
Muscular Dystrophy Campaign to ensure services are improved as soon
as possible.

6. The Welsh Assembly Government continues to look into the possibility of
creating more neuromuscular Care Advisor and Specialist Nurse posts in
Wales to work alongside the two posts announced in April 2010.

7. New Care Advisors learn from experienced Care Advisors already in post
throughout the UK.

8. The Welsh Assembly Government ensures adequate care and support is in
place for the newborn-screening service in Cardiff.

9. The Cardiff and Vale NHS Trust ensures the long-term stability of the
sleep-study service in Cardiff.

10. Specialist paediatric and adult neuromuscular physiotherapists are
appointed to educate and train community physiotherapists.

11. A multi-disciplinary team is set up to conduct internal reviews of different
areas of neuromuscular care provision to ensure the transition from
paediatric to adult services is smooth and that any gaps in service provision
are filled.

12. Health Boards in Wales ensure that adequate training in neuromuscular
conditions is undertaken by all relevant staff at all levels of care.

13. That comparison studies are conducted by the Welsh Assembly with other
parts of the UK to ensure equality of access to specialist neuromuscular care.

14. The Duchenne muscular dystrophy standards of care guidelines are made
widely available to those commissioning, planning and delivering services
so that high quality standards of care are achieved in a multi-disciplinary
approach for all neuromuscular conditions. As new guidelines emerge
for other neuromuscular conditions, these should also be made widely
available so that commissioning, planning and delivery of these services
can also be improved.

15. Welsh Assembly Government officials and organisations in the NHS in Wales
are made accountable for the decisions made in service provision.

Costings Data

Based on NHS data in English regions, we have calculated that, for the
estimated 3,432 people with muscle disease in Wales,1 there would be
some 1,355 emergency admissions each year at a total cost of £3.92 million.
We believe that access to high quality, specialist multi-disciplinary care
would significantly reduce the considerable cost of these unplanned
emergency admissions.

The following table illustrates the recommended posts which are necessary
for patients living with neuromuscular conditions across Wales to prevent
the service from collapsing:

Posts required £s recurring

1.5 WTE Consultants (inc. secretarial support)
specialising in Neuromuscular conditions
£195,000
3 WTE Care Advisors/Specialist Nurse
(band 7 – mid range)
£129,036
1 WTE Specialist Physiotherapist (band 7 – mid range) £43,012
0.5 WTE Psychologist (mid grade band 8a) £25,533
0.5 WTE Occupational Therapist (band 7 – mid range) £21,506
1 Network Manager (band 7 – mid range) £43,012
0.5 WTE Administrator (band 5 – mid range) £14,591
Total investment required (full year cost) £471,690

Yes they have stopped short of recomending a Welsh neuromuscular centre.

Yes, some of the recommendations are a bit woolly.

Yes, they have stopped short of calling for the full uptake of the International Care Standards for Duchenne Muscular Dystrophy.

But this is a start.

When your reference point is nothing this document does appear to be somthing tangable.