West Berkshire Neurological Alliance

Representing all Berkshire West people with a neurological condition.

Health and Social Care Award Winner 2008: 'Leadership for Improvement'

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Our former and current projects

Specialist Nurse | 2007 Conference | 2009 Conference and Pain Survey 

2011 Conference | 2014 Conference | 2016 Conference 

Hydrotherapy Pool and Specialist Gym | WBNA Focus Group Reports

 

 Specialist Nurse for rare and complex neurological conditions

background and purpose | coverage | what will be achieved | finance and control | impact study | conclusion | budget | award

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. 

Background and purpose.

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.

Coverage.

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.

What will be achieved.

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. 

Finance and control.

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. 

Impact study.

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. 

The full impact study document can be viewed by clicking here.

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. 

In conclusion.

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. 

John M Holt

Liaison Officer

West Berkshire Neurological Alliance

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Specialist General Neurology Nurse, West Berkshire

Project Budget

  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

Total project cost £90,106

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Specialist Nurse Project Wins 'Leadership for Improvement' Award

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.

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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."

 

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2007 Conference

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.

To see the conference programme, click here.

 

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2009 Conference and Pain Survey

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.

To see the conference programme, click here.

To see the conference report, click here.

Whilst organising this event, it was decided that it would be good to get some information on patients’ experiences of pain and pain management in the West Berkshire area. In the spring of 2009, the WBNA therefore carried out a Pain Management Survey of people living with pain who are living or working in the Berkshire West NHS area of Reading, Wokingham & West Berkshire. Based on the results from the survey, we produced a set of recommendations on pain management for the commissioners of Berkshire West Primary Care Trust.

To see the survey results, click here.

To see the recommendations, click here.

 

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2011 Conference

Our 2011 conference, 'New Opportunities for Neuro', took place on 4th October 2011 at the Arlington Arts Centre, Mary Hare School, Newbury. The wide variety of speakers included Dr Stephen Ray, senior lecturer at Oxford Brookes University; Professor Kevin Warwick, Head of Department of Cybernetics at Reading University; and Dr Trevor Powell, consultant neuropsychologist with Berkshire Healthcare NHS Trust.

To see the conference programme, click here.

 

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2014 Conference

Our 2014 conference, 'Neuro-rehabilitation: facts, fears and the future', took place on 6th March 2014 at Wokefield Park, Mortimer. Speakers included Dr Diane Playford, Director of the Institute of Neuropalliative Rehabilitation, Royal Hospital for Neuro-disability, who chaired the 'Facts' session; Dr Ralph Gregory, Consultant Neurologist, Poole General Hospital, who chaired the 'Fears' session; and Dr Sophie Duport, Head of Research, Royal Hospital for Neuro-disability, who chaired the 'Future' session.

To see the conference programme, click here.

 

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2016 Conference

Our 2016 conference, 'Integrated pathways of neurological care', took place on 3rd May 2016 at the Arlington Arts Centre, Mary Hare School, Newbury. The keynote speaker was Professor Derick Wade: author, lecturer, and editor of Clinical Rehabilitation, who spoke on 'Integrated care - how to do it right'. Other speakers included Dr Sarah Cader, consultant in neurology in Hampshire; Dr Deepak Ravindran, lead for Pain Medicine at Royal Berkshire Hospital; and Dr Faraz Jeddi, consultant in Neuro-rehabilitation Medicine at Royal Berkshire Hospital and clinical adviser to WBNA.

To see the conference programme, click here.

 

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Hydrotherapy Pool

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).

News update, 12th July 2010

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.

 

News update, 8th February 2011

We are delighted to update you with recent developments and to let you know what we will be doing in the coming months. The full professional team is now all in place, preparing a planning application for a community hydrotherapy pool and specialist disability gym on the outskirts of Newbury and Thatcham. The drawings are complete and our Planning Consultant is working with engineering consultants, environmental consultants and our legal team to get the application pulled together.

The costs of the application are being covered by grants from West Berkshire Neurological Alliance, Newbury & District MS Society, West Berkshire Disability Alliance and private donations. We are most grateful for all that support. The application cannot be approved by Planning Officers without also having to be approved by the Planning Committee, so the process is likely to take a few months.
 
The costs of acquiring the plot will be covered through a joint development, known as a 'Section 106 agreement' and we are most grateful to the landowners for their ideas and supportive approach, making it possible to acquire the land without having to raise any cash.
 
Once all the above is secured we will be clearer about the cost of the building, currently estimated at around £1.2 million. We have been in a longstanding dialogue with Greenham Common Trust, which remains supportive. We have always assumed that we will need to raise a significant sum to complete the construction and commissioning stage and have plans in place to see that through. We need to find additional volunteers to drive that fund raising phase and have an immediate need to replace the funds we are currently spending on the planning application.

Our not-for-profit social enterprise has been registered as a Company and charitable status has been applied for. Sixteen local voluntary and sporting organisations initially expressed interest as stakeholders and we will be making arrangements later this year to establish them as members with voting rights, the method whereby the Board will be held to account.

Our web site, developed with help from Add Extra, contains further information and is regularly updated. If you are interested in volunteering or supporting this major community project in any way we would be delighted to hear from you!

 

News update from West Berkshire Therapy Centre, October 2013

We are delighted to announce that West Berkshire Therapy Centre's specialist exercise and rehab gym is expected to open in the Spring of 2014 and the hunt for suitable premises is on! This is because the project Board has now raised £80k and a final big push is under way to raise the balance needed to set up and run the service. The gym will benefit those with neurological, cardiac, pulmonary, diabetes, sight loss and many other disabling conditions.

This will be no ordinary gym! It will feature a range of power-assisted equipment that moves every major muscle in the body, gently and repeatedly, strengthening and balancing weak muscles, improving blood circulation, helping weight management and fending off the risk of developing some of the medical complications that often arise for people whose medical condition or disability makes it difficult to take exercise. Other specialised motorised equipment will be available to help with walking, gait and balance. Because the equipment moves the user it requires no effort so can help even the weakest of muscles. This will not be the gym to use if you want to ‘pump iron’!

Each main item of equipment will include adaptations where necessary for wheelchair or hoisted access. The gym will be calm and spacious and laid out to accommodate disabled visitors with their equipment and carers, very different from most other gyms. We will provide professionally supervised, high quality rehabilitation, charging a modest tariff, and have identified four main types of need:
• for those discharged from NHS physiotherapy, but still in need of therapy or exercise that conventional gyms are unable to offer due to the way they operate,
• for those with deteriorating conditions, delaying the need for medical intervention or treatment,
• for those with significant or morbid obesity, typically those with a BMI over 35,
• for those with sight impairment or blindness or who otherwise find conventional gyms disorientating, unsafe or difficult to use.

We are most grateful to West Berkshire Public Health Department for offering a grant sufficient to cover the first year’s salary costs, to West Berkshire Neurological Alliance for supporting us as ‘Friends of West Berkshire Therapy Centre’ and to all those who have sent in donations and words of support.

We would value anything you can do to help us, perhaps by:
• holding a fund raising event,
• making a donation to help us buy equipment,
• volunteering your time or expertise
• informing prospective users about the services we will be providing.

Separate negotiations continue to secure a larger plot suitable to site the gym with a hydrotherapy pool alongside.

 

News update from West Berkshire Therapy Centre, August 2016

The Centre is now fully established and operational in Thatcham. It provides exercise therapy using specialist equipment for those too disabled to exercise safely in conventional ways or who no longer qualify for physiotherapy or exercise therapy from the NHS. Exercise using power-assisted equipment helps individuals with disabilities to maintain or improve mobility and general well-being.

Each service user is assessed prior to exercise by a qualified, registered physiotherapist. Exercise programmes are tailored to individual needs, to achieve realistic, short term and long-term goals. The Centre is equipped with specialist power-assisted chairs and bikes designed to provide full body exercises and conditioning. Equipment includes nine power assisted chairs, three hand / feet cycling machines, a highly versatile treadmill, a vibration plate a balance plate machine and other physiotherapy equipment.

Service users are able to benefit from:

• Decreased hospital admissions
• Increased joint flexibility
• Maintenance of or increased strength
• Weight loss and management
• Improved circulation
• Improved cardio-vascular endurance
• Enhanced well-being and self esteem
• Increased social interaction
• Greater independence
• Better control over tasks of daily living
• Enhanced co-ordination and balance

Those using the Centre include neurological impairment (stroke, multiple sclerosis, Parkinson’s disease, etc) through to blindness, amputees, those with rheumatism or arthritis, also those recovering from joint surgery and other disabling situations. The service is not intended for those who can take exercise using normal means, but is for those who need a spacious, quiet, supportive environment with continual physiotherapeutic input.

The Trustees remain committed to developing a hydrotherapy service and are reviewing options as to how to ensure this can be developed into an enduring facility that will complement the power-assisted exercise service in due course.

The Centre has free parking, a relaxed environment and welcomes those with walking aids, wheelchairs and guide dogs. Carers are encouraged to accompany their loved ones. The centre is a not-for-profit charitable company with full charity status. Voluntary contributions are accepted, as there are no fixed tariffs or contracts.

Location:  Frank Hutchings Hall, Harts Hill Road, Thatcham RG18 4QH

Tel: 01635 864561

Email: info@westberkshiretherapycentre.org.uk

Web site: www.westberkshiretherapycentre.org.uk

August 2016, Berkshire Health & Well-being Social Enterprises

 

News update from West Berkshire Therapy Centre, October 2016

We have produced a short video showing the range of equipment in the Centre. It gives a good idea of the types of supported exercise and therapy which are available.

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WBNA Focus Group Reports

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.

First event: Experiences at time of diagnosis

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. One patient and / or carer representative for each of the main neurological conditions was invited.

To see the full report on the event, click here.

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Second event: Experiences when hospitalised

The second event was held on 17th May 2010.  This event gathered information about neurological patients' experiences when they were hospitalised, either because of their neurological condition or as a result of an unrelated condition. It then identified areas where problems tend to arise and developed some recommendations how these could be minimised or avoided.

To see the full report on the event, click here.

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Third event: Accessing physical therapies, pain management and psychological support

The third event was held on 4th October 2010.  It gathered information about problems encountered by different groups of patients, particularly 'novice' and 'experienced' patients, in determining what therapies are available and finding the appropriate pathways and means of access to those therapies.

To see the full report on the event, click here.

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Fourth event: Funding and using disability equipment

The fourth event was held on 18th April 2011.  It discussed the experiences and problems encountered by people in obtaining and maintaining equipment to support a wide range of conditions.

To see the full report on the event, click here.

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Fifth event: Shared experiences of wheelchair users: funding and using wheelchairs

The fifth event was held on 5th September 2011.  It discussed the experiences and problems of carers and wheelchair users, and their relationship with the NHS wheelchair service.

To see the full report on the event, click here.

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Sixth event: Minimum standards for neurological rehabilitation

The sixth event was held on 7th November 2011.  It discussed the perspectives of patients, carers and the voluntary sector with a view to informing the recommendations to be put forward by the Cardiovascular Network of the South Central Strategic Health Authority.

To see the full report on the event, click here.

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Seventh event: Living with incontinence

The seventh event was held on 26th March 2012.  It discussed the effects of incontinence on health and quality of life, and gathered people's experiences in dealing with the condition and their interactions with various healthcare professionals.

To see the full report on the event, click here.

Following this, we conducted a joint survey on incontinence with West Berkshire LINk, the results of which can be seen here.

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Eighth event: Epilepsy nurse specialist

The eighth event was held on 23rd July 2012.  It discussed a proposal to appoint an epilepsy nurse specialist  for Berkshire West.

To see the full report on the event, click here.

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Ninth event: Living with speech, language, swallowing and communication impairment

The ninth event was held on 22nd October 2012.  It discussed the problems and experiences of people with speech, language, swallowing and communication impairment in Berkshire West who are affected by Stroke, MS and MND.

To see the full report on the event, click here.

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Tenth event: Comorbidity - living with two or more long term conditions

The tenth event was held on 25th March 2013.  Its purpose was to explore patient and carer experiences following onset of a second medical condition, and to discuss how services could be improved for the future.

To see the full report on the event, click here.

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Eleventh event: Shared experiences of wheelchair users part 2

The eleventh event was held on 19th March 2013.  It was a follow-up to the fifth event on the experiences and problems of carers and wheelchair users, and reflected subsequent experiences, actions and changes in the intervening 18 months.

To see the full report on the event, click here.

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Twelfth event: Coping when health and social care systems falter

The twelfth event was held on 14th October 2013.  Its purpose was to explore patient and carer experiences when health and social care systems falter and to explore how services could be improved for the future.

To see the full report on the event, click here.

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Thirteenth event: Continuity of care

The thirteenth event was held on 16th June 2014.  Its purpose was to identify situations where continuity of care is important, personal experiences and impacts, risks and benefits of disjointed and joined-up services, and good practice for others to consider.  It also explored how services could be improved for the future.

To see the full report on the event, click here.

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Fourteenth event: Living with migraine

The fourteenth event was held on 29th September 2014.  Migraine and headache have been identified by the NHS, nationally, regionally and locally as a significant issue, with high care costs attaching. This has led to initiatives locally and regionally, seeking to improve future service delivery. Therefore the Alliance convened a focus group on 'Living with Migraine and Headache' to provide a local patient perspective and inform these developments.

To see the full report on the event, click here.

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Fifteenth event: 'My experiences of being diagnosed with a long term neurological condition'

The fifteenth event was held on 14th September 2015.  The Berkshire West Neuro Steering Group is a sub-group reporting to the NHS Berkshire West CCG Federation Long Term Conditions Board. A priority for the Neuro Steering Group was to understand  and improve the pathways and methods used by the local NHS to diagnose neurological conditions. Therefore the Alliance convened a focus group entitled 'My experiences of being recently diagnosed with a long term neurological condition' to provide a local patient perspective to inform these developments.

To see the full report on the event, click here.

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Sixteenth event: 'My experiences of caring for someone with a neurological condition'

The sixteenth event was held on 16th May 2016.  The purpose of the focus group was to identify real-life experiences of being a Carer looking after someone with a neurological condition and to identify recommendations to service providers to improve the experiences of those in such a role.

To see the full report on the event, click here.

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