Nurse_Appeal

Carol Allen has been in post since October 2005, providing a community based nurse service for people affected by Motor Neurone Disease Huntington's Disease, Myasthenia Gravis, Ataxia, Late Onset Polio, PSP and Multiple System Atrophy. Her post covers the western half of Berkshire and is funded jointly by the Alliance, the Motor Neurone Disease Association, the British Polio Fellowship and the Huntington's Disease Association, with financial support coming from many quarters. Reading University have conducted an impact study which will be key to determining how the post is funded at the end of its two year trial. Carol's main role is helping people affected by these conditions to manage better at home and thereby minimise hospital stays. To find out more phone John Holt on 01635 33582.

In 2001 our research showed there were only 10 specialist neurology nurse posts in Thames Valley Strategic Health Authority (TVSHA), about one quarter the number recommended by professional and expert bodies. These are mainly dedicated to patients with the more common conditions such as MS and Parkinson’s. A priority is the development of a fully structured network of specialist neurology nurses.

This project is about tackling the needs of those with the more rare, degenerative and debilitating neurology conditions. This complements the efforts of others currently working on more mainstream projects to secure specialist nurses for Epilepsy and Alzheimer’s patients. The team of NHS Consultants in Neurology and Neuro Rehabilitation providing service to the West of Berkshire share this priority. We have worked with them to agree a fully structured vision about the subject.

The geographical area served is that which is covered by the three Primary Care Trusts (PCTs) of Newbury, Reading and Wokingham; 'Berkshire West'. The population is about 450,000. The size of the patient portfolio is about 50, which is calculated as realistic in view of the exceptional needs of the patient group. The post is nurse grade H, with 80% of time allocated to working in the community. Referrals are through GPs, Consultants, or by regulated self referral. Main duties include training others in advanced nursing such as PEG feeding, co-ordination across support agencies, general training of colleagues, emotional support and palliative support.

There will be more rapid access by patients and their carers to the specialist knowledge and services they need, leading to less stress and anxiety and greater levels of independence and self management. Patients will enjoy a better quality of life and be more fulfilled within their own community setting. The rate of infections, hospitalisations, and accidents will reduce. There will be faster discharge back into the community for those who become hospitalised. These are all outcomes that research has shown to result from neurology nurses specialising in MS or Parkinson’s. Specifically, research by Johnson et al on the MS Nurse post in West Berkshire shows that post to be both cost and clinically effective.

Carol works in the same team as the existing specialist MS and Parkinson’s nurses, under the same clinical supervision and guidance of Dr Christine Collin. Dr Collin leads a unique department in Reading District General hospital, which sits alongside the tertiary tier of services provided from Oxford. A model for others to follow, in other parts of the country, should emerge.

The budget for the post over two years is £90,106, and following an intensive program of fundraising this has now been fully achieved through the efforts of the Alliance and local Branches of the Motor Neurone Disease Association, British Polio Fellowship and Huntington’s Disease Association. Statutory sector funding is unlikely at this time; however, we believe that through sound monitoring of the impact of the project the role will become fully financed by the statutory sector after two years. We have letters from both West Berkshire Council and the local Primary Care Trust supportive of establishing the post.

The impact study on the Berkshire West Rare Neurological Conditions Nurse Specialist post that we and our partners have been funding since October 2005 is now complete. The post has been found to be both clinically and cost effective by this independent research, showing a payback of over twice the cost, coupled with very strong approval ratings from patients and carers. We are delighted that Berkshire West PCT has already committed to provide interim continuation funding for this post, which recognises its value both to patients and to the NHS.

We are indebted to Carol Allen, who bravely took on the untested role of Rare Neurological Conditions Nurse Specialist, for the way she has undertaken the role, delivering a service that her patients continue greatly to appreciate, through her timely, professional insight and caring efforts.

We are most grateful to Dr Ann Quinn and her colleagues at Reading University for conducting this study and to Royal Berkshire Hospital Foundation Trust who have hosted the post. We are particular grateful to Professor Christine Collin who provided clinical leadership. We also thank the Reading and West Berkshire Branch of the Motor Neurone Disease Association, the Berkshire Branch of the British Polio Fellowship and the Reading Branch of the Huntington's Disease Society who provided funds and other input into the development of the role.

We are grateful to the many grant giving organisations and individuals who provided funds for this pump priming pilot which is likely to be of direct relevance to many local health service providers across the UK interested in establishing or consolidating the services needed to help meet the requirements of the National Service Framework for Long Term Conditions.

This project will make an overdue and very welcome impact for those affected by rare, degenerative neurological conditions, through the availability of more timely and expert nursing help.

	Year 1	Year 2	Year 3

	£	£	£

Recruitment	1,200	0	0
Information Technology	750	0	0
Salary, NIC, pension and accommodation	39,206	40,382	0
Car mileage: 5,000 x £0.35	1,750	1,803	0
Training	500	515	0
Project monitoring	1,500	2,500	0

Total	44,906	45,200	NHS fund

West Berkshire Neurological Alliance was honoured for its contribution
to the Rare Neurology Conditions Nurse Specialist project
at an Awards Ceremony at Oxford on 23rd April 2008
hosted by South Central Strategic Health Authority

The award was:

Leadership for Improvement award: This award recognises excellent leadership approaches or leaders that can demonstrate positive and sustained impact on patients, service users and staff.

Winners: Carol Allen, Prof. Christine Collin, (Royal Berks Hospital), West Berkshire Neurological Alliance.

Health and Social care teams across the NHS South Central region have been recognised for their excellent work at a glittering ceremony held on 23rd April 2008.

The Health and Social Care Awards are the flagship awards of the Department of Health and coincide with this year’s 60th anniversary of the NHS. The awards, open to all health and social care staff, recognised the inspiring and passionate work that goes in to helping and caring for thousands of people every day of the year.

The awards also highlight and celebrate innovation and excellence and recognise and encourage working together across organisations and professions, with patients, service users and local people.

There were 12 categories in all and each one recognises the diverse ways in which excellent care can be achieved. The categories cover the full range of NHS and social care services and include areas such as:

The winners received their certificates from guest of honour Pete Goss MBE, round the world yachtsman and holder of the Legion d`honneur who paid tribute to the NHS for the care provided to his daughter.

All the winners from the NHS South Central health & social care awards ceremony will go through to the national awards evening to be held in July at Wembley Stadium, hosted by the NHS Institute for Innovation and Improvement.

In his welcome to those attending the event Dr Geoffrey Harris, Chairman of South Central Strategic Health Authority said " Today is our privileged opportunity to recognise and pay tribute to those individuals and to those teams who have achieved so much, and are therefore deserving of our praise and recognition for their innovation and dedication to raising levels of service. At the heart of this remains the patient; but as important are those who strive and devote themselves towards delivering ever improving healthcare."

Our 2007 conference, 'Challenges Facing Neuro-Rehab', took place on 18th April 2007 at Marriott Courtyard Hotel, Padworth. The keynote speaker was Professor Keith Andrews, Director of the Institute of Neuropalliative Rehabilitation, Royal Hospital for Neuro-disability, London. Other speakers included Professor Geoffrey Raisman FRS, Professor Alistair Buchan and Mr Jack Collin.

Our 2009 conference, 'Brains Pains and Gains', took place on 9th July 2009, at the Arlington Arts Centre in Newbury. There was a wide variety of speakers including medical practitioners, academics and service users, as well as three 'taster' sessions of pain management strategies: Myofascial Release Techniques, Hypnotherapy and Relaxation, and Tai Chi Chuan.

The main project into which we are currently putting our efforts is the proposed West Berkshire Hydrotherapy Pool and Specialist Gym. To see a Powerpoint presentation giving a brief introduction and explanation of this project, click here (then read on).

Things are moving on many fronts! We are embarked on securing planning permission on a very suitable plot and we enjoy excellent professional support from several individuals and organisations. We are fully confident we will be granted planning approval for a building to house a hydrotherapy pool, specialist gym and associated facilities.

The building cost is estimated at £1.2million. We continue with negotiations to secure the major part of the finance from interested parties. That will be followed by a further fund raising push to ensure we can complete. We have some cash with which to help pay our way, thanks to West Berkshire Neurological Alliance and Englefield Trust, but need more to maintain momentum.

We are now a registered Company and are very grateful to Blandy & Blandy, Solicitors, and to Social Enterprise Berkshire for their considerable help in this. Sixteen organisations originally signed an underpinning interest in becoming members of our not-for-profit Social Enterprise and we are most grateful for their ongoing commitment. We are delighted that Gurmeet Sian has become our architectural advisor and that John Tew and Shaun Leahy FCA have joined our Board. We continue to seek volunteer directors and other skilled volunteers.

Our client user group has begun to refine our design specification to ensure that the detail within the facility will be suitable for all users. We are confident about our business plan and the Board is in robust shape to drive the project through to a successful, working establishment. The Board is satisfied that this important community health and well-being facility will be a long-term success and that benefactors large and small will wish to have their names associated with it.

On 7th October 2009 we held our first Patient Consultation Event at the Marriott Courtyard Hotel, Padworth. The purpose of this event was to encourage neurology patients and their carers to describe their experience of health and social care services and to identify underlying themes of good practice and opportunities for improved services in the future. The ultimate aim of these events is the identification of best practice and opportunities to improve, based on understanding of what actually happens and what might work better. One patient and / or carer representative for each of the main neurological conditions was invited.