Download West Berkshire Neurological Alliance Representing all West

West Berkshire Neurological
Alliance
Representing all West Berkshire people with a neurological condition.
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Record of a meeting held at 1400hrs on Tuesday 20th April 2004
at St Joseph’s Church Hall, Newbury.
13 members were present, with three guest speakers. There were 2 apologies for absence.
First guest speakers: Suzanne Oliver and Marie Heron. Newbury Cancer Care Trust is at the Charles Clore Unit, Sandleford. Set up
18 years ago, the main work is to support patients with cancer. 10% of available funds are for life threatening conditions other than
cancer, which therefore includes neurology. There is an equipment store, supplying pressure relief mattresses, communication systems,
bathing aids, etc. The aim is to help people to cope better in their own homes. Agency workers can give up to 10 nights of nursing care
or home visits. Help is available for respite or holidays. Palliative care is also funded. There are links to the 4 Rainbow Rooms in West
Berkshire Hospital. The Day Unit takes 14 patients with life threatening illnesses on a 10am - 3pm basis. The aims are to provide an
enjoyable day and respite. Staff include a Physiotherapist, Occupational Therapist, Dietician, Aromatherapist, and a Clinical
Psychologist. Transport is available. This free service is not being fully utilised, and referrals from life threatened neurology patients are
most welcome.
Second guest speaker: Catherine Mountford. Catherine gave apologies from the Chief Executive of Newbury PCT that,
unexpectedly, she was unable to attend. Catherine is Director responsible for commission Neurosciences. She outlined 4 current main
activities.
1. The Strategic Health Authority (StHA) has started a Neurosciences benchmarking study. This is ‘top down’, (what and where), to
identify where resources are short, and to improve the way that Oxford is a hub to several district general hospitals. This review is
different from the patient driven ‘what was the experience and effectiveness?’ benchmarking study envisaged by the Alliance. A good
outcome would be to get the two studies to meet in the middle. Several other regional neurological alliances, as well as the national
Alliance, are reviewing how they might join such a review. Reference was made to the national definition of Neurosciences and a copy
of this is to be made available.
2. A new service, providing beta interferons for MS patients, is now in place. 184 patients have benefited, about 50% of the indicated
numbers, at a cost of about £1 million.
3. The emergency access pathway has been reviewed, and a paper detailing key issues was circulated, with several matters outstanding,
to be addressed. Matters should improve when Neurosciences transfer to the John Radcliffe hospital in 2006. Facilities will expand, but
no additional funding is yet agreed. It will be useful to meet with the planners.
4. Close links are being forged with the cancer network, reference neuro-oncology services.
Our concern that there is no patient representation on the Thames Valley Neurosciences Steering Group is well known. Catherine
emphasised her willingness for regular contact with the Alliance, but membership of her group is not currently an option.
Specialist neurology nurse project (rare and aggressive conditions). £39k has been pledged, leaving £51k to find, with various
Trusts considering our project.
Commission for Health Improvement. The Commission has invited us to suggest a definition for inclusion within their star rating
system for Primary Care Trusts. Further details have been requested prior to us consulting with members and sister alliances.
National Service Framework. Recommendations go to the Secretary of State very soon. The NSF Research Commissioning Group has
been contacted to register our interest in applying for funds once their programme is agreed. They are interested in benchmarking.
Dr Gregory’s project grant. Dr Gregory has two patient representative attending his Steering Group meetings reference his ‘Action
On Neurology’ grant, looking at the IT interface requirements between GPs and neurologists, and we are in contact with them.
West Berkshire Social Services issues. The Secretary, with the Chairman of West Berkshire Disability Alliance, is to meet shortly with
Councillor Barnett and the Head of Adult Services to follow up a range of Social Care issues.
West of Berkshire Chronic Disease Collaborative. For ‘Disease’, read ‘Condition’, meaning this new initiative embraces all
neurological conditions. A meeting has been held with the project manager, Sarah Cox, and neurology should be included in phase 2.
The initiative is a fore-runner to the NSF for Long Term Conditions, and should focus on many issues raised by the Alliance. It is hoped
that West of Berkshire will be awarded the status of ‘Case Management Demonstration Site’, which attracts funds for developing ideas.
Conference 2005. The conference team meets regularly and is making excellent progress.
Speech & Language services. Two Executive members meet shortly with the local S & L Service Manager and the charity Speakability
JMH 26/12/2003
to consider gaps in service provision.
Physiotherapy. Leslie Holmes has replaced Paul Lynch as Service Manager. Members were concerned at the continuing lapse in
progress with the physiotherapy service review.
National Alliance. Judith Kidd is Chief Executive, all other staff having moved on.
Executive Committee. The Chairman appealed for more new blood on the Executive.
ME awareness day. Newbury Town Hall is booked from 2 p.m. on 12th May to host ME awareness day, to recruit a local support
group. All are encouraged to promote awareness.
Dates and venues of meetings for 2004.
Fri. 25th June. 7 30 p.m. at St Joseph’s. Open meeting. Dr Christine Collin.
Thurs. 30th September. 7.30 p.m. at the Mencap Centre. AGM
Tues. 12th October. 2 p.m. at St Joseph’s. Open meeting.
Thurs. 9th December. 2 p.m. at St Joseph’s. Open meeting.
John Holt
Secretary
West Berkshire Neurological Alliance
JMH 26/12/2003