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.

A further conference is planned for 2009, but the title and details have yet to be decided.

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

Information and invitation to become a member of the organisation to be established to provide hydrotherapy and power-assisted gym services in Berkshire West

We are in a good position to get agreement for a hydrotherapy pool and Power-assisted Exercise Gym, located close to the West Berkshire Hospital in Thatcham.

We are in the process of establishing a new organisation, probably to be called 'Berkshire Health & Well-being Social Enterprises'. The purpose of this organisation will be 'the provision of community health & well-being services in and around Berkshire to those with (particular) (identified) (specific) needs on a not for profit basis'. (Words in brackets will be finalised before incorporation into Constitution.)

The primary purpose is charitable so, whereas we intend to take advice and consider options carefully the entity will be either a company limited by shares or by guarantee and will be owned by the shareholders or guarantors (as the case may be) such as your organisation, whose liability will be limited to the cost of the shares or guarantee. The shares or guarantees are likely to be issued at £100 to each member. Members will be entitled to vote on appropriate matters such as electing Directors and other key matters. Typical members are expected to be local voluntary groups or other organisations whose members or dependents might have need of health and well-being services of the type described above.

Without evidence of a strong membership base we may find it difficult to secure the land and building needed to provide these important services. Hence the agreement of your organisation to become a member is very important to making progress. Our initial target is to secure between 15 and 30 such members. This invites your organisation to indicate in principle whether you will agree to become a member of Berkshire Health & Well-being Social Enterprises. We recognise that you will require to inspect the final prospectus before committing.

Currently the project is being driven by a project Board made up of five unpaid non-executive Directors, Kevin Carter, Norman Casson, David Fothergill, John Holt and Irene Waters. West Berkshire Neurological Alliance is acting as the host organisation until the Social Enterprise becomes independently, legally constituted.

The initial objective is to establish a Warm Water Therapy Pool and Power-assisted Exercise Gym close to West Berkshire hospital. There is a consensus towards a one-stage build, but there is the option to start with a pool only and add a gym later. To provide services very close to the hospital is the agreed priority if possible, but other land options could be viable if necessary.

Key assumptions are that Berkshire West Primary Care Trust (PCT) will grant to Greenham Common Trust (GCT) permission to construct a pool and gym building on PCT land, on a long lease peppercorn rent, probably between 30 and 125 years duration or similar arrangements. In tandem, GCT will grant to our Social Enterprise the right to provide the said services. In return there will be an arrangement of benefit to the PCT.

Securing the land and building deal depends upon agreeing Memoranda of Understanding and Heads of Agreement between the Social Enterprise, Berkshire West PCT and Greenham Common Trust. Drafting of these documents has commenced.

There are three possible locations on the NHS land, each with merit. At this stage all three options should remain open while investigating the best solution overall. While helpful for the proposed services to be near the hospital it is also important for several reasons to have clear physical and architectural separation.

Much of the business case will be based on the two reports commissioned from Profundus. To see these please visit the downloads page of www.profundus.com . These demonstrate the unmet need and options to meet that need. The PCT requires strong evidence that activity initiated by the Social Enterprise will never cost the NHS any money or cause the public to think the NHS has any responsibility for continuation in the event of discontinuation of the Social Enterprise. Our business plan and model must and will demonstrate this.

Greenham Common Trust has previously stated in public: 'We will be pleased to look at how we can assist in making this project happen.' and remains supportive on the basis of having similar expectations to those of Berkshire West PCT as to the business plan and model.

Some further detailed investigation is needed to address some important questions before the business plan can be finalised. We encourage you to read the two reports from Profundus and any other communications relevant to this project and to ask questions or provide additional information to help this process.

Following a review of its membership the interim Board seeks to attract additional user-group representation onto the Board. You are invited to consider recommending candidates who could fulfil the role of unpaid non-executive Director in that particular or any other relevant capacity.

The feasibility studies were funded on a project basis from various donors and there is no free cash currently held by the project. The cost of setting up the Social Enterprise should be minimal and Social Enterprise Berkshire is assisting the process. The project will need input shortly from architects and others and we intend to discuss the costs of this next phase with GCT when appropriate. Any advance membership fees and ad hoc income would be welcome.

Subject to final confirmation, the pool is planned to have a surface area of 80 sq.m. and an estimated 840 attendances per week are anticipated by year three. Use of the gym by those with health and well-being needs is expected to be up to 200 visits per week, increasing by the same number again if access is also extended to others with a more general fitness requirement.

There is a consensus that the building should be of good visual impact inside and out, with great importance on achieving good 'people flow'. These and other factors (e.g. energy efficiency) will be covered in the Heads of Agreement. Your organisation may wish to make input into these or other matters and it would be helpful if you could indicate where your input should be called upon.

We are not currently in a position to indicate timescales but expect to indicate likely milestones in our final prospectus.

Your response to this prospectus would be much appreciated by completion of this form. Please contact the undersigned for further information,

John Holt, Interim Director
2, Clayhill Crescent, Newbury, Berkshire RG14 2NP
Tel: 01635 33582 email: johnmholtbsc@aol.com