2022-06-30-accounts

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COMPANY REGISTRATION NUMBER 02939840

THE NEUROLOGICAL ALLIANCE

(LIMITED BY GUARANTEE) FINANCIAL STATEMENTS

FOR THE YEAR ENDED

30 JUNE 2022

Charity Number 103903

THE NEUROLOGICAL ALLIANCE

TRUSTEE ANNUAL REPORT

LETTER FROM THE CHAIR

As I write this, the neurological community, including people affected by neurological conditions, continue to face some of our most profound challenges ever – increases in cost of living are hitting people living with disabilities incredibly hard, the NHS is still reeling from the impacts of the COVID-19 pandemic, and the health service is going through major changes and Government structures are shifting. It can sometimes feel like we are just fighting fires, rather than being in a position to improve to treatment and support. There is more than ever for the Alliance to influence.

Here at the Alliance, we have been in a fortunate enough position to invest our resources and grow both our membership and our team. We invested in our My Neuro Survey, our fourth national patient experience survey and it was our biggest and most collaborative yet – together with Alliances across the UK, we delivered a survey accessible to all people with neurological conditions, no matter their age, and we delivered a united campaign too. The ‘Back the 1 in 6’ campaign continues to go from strength to strength – as I write this, more than 13,500 have supported the campaign, and we have exciting plans for the campaign as it evolves in 2022/23.

We also begun to develop our approach to co-production, with the establishment of our first ever co-production group of people affected by neurological conditions to steer the strategy of the ‘Back the 1 in 6 campaign’. Our new Co-Production Coordinator, Jess Mansel, has done a wonderful job of setting up the group, and I am confident they will go from strength to strength in the years to come.

Despite the very real challenges faced by both the voluntary sector and industry, our membership grew significantly in 21/22 too. This is a reflection of the excellent work undertaken by the team across the year, the difference we are making and the growing reach we are having. We hope the coming year will be another year of growth, enabling us to reach more people affected by neurological conditions and increase our influence even further.

It is in that context that we launched our new five-year strategy in September 2022, ‘Together for the 1 in 6’. In the strategy, we are committed to greater involvement of people affected by neurological conditions in all we do and growing our influence on public policy even more.

We do of course begin the strategy in challenging circumstances, but with some important opportunities ahead of us – new integrated structures within the NHS hold the promise of coordinated care, for the first time in eight years National Clinical Directors for neuroscience will be appointed by NHSE/I, and neuroscience transformation is a priority within the NHS in England. Perhaps most importantly, our collective movement is stronger than ever, with more organisations joining the Alliance by the month.

The next five years therefore represent unprecedented challenges and opportunities we must grasp as a community. We absolutely have to leverage the growing influence

the community holds at a national, regional and local level to ensure people affected by neurological conditions are heard and have real influence. We as a community have to collaborate in new and different ways too - we share many common challenges, which will only be addressed by working shoulder to shoulder and learning from one another. We are learning more about how to diagnose and treat many neurological conditions every day – it is now up to us to ensure we build a health and care system and workforce to ensure that innovation translates into improved quality of life no matter where you live.

I am hopeful of the positive change we can achieve over the next five years and beyond – quite frankly, we have never been in a better position, nor at a more critical moment, to back the 1 in 6 living with a neurological condition.

David Martin, Chair, The Neurological Alliance

THE NEUROLOGICAL ALLIANCE

ANNUAL REPORT AND ACCOUNTS

YEAR ENDED JUNE 2022

REFERENCE AND ADMINISTRATIVE DETAILS	REFERENCE AND ADMINISTRATIVE DETAILS
Registered charity name	The Neurological Alliance
Charity registration number	1039034
Company registration number	02939840
Registered office	The Junction
	Station Road
	Watford
	Hertfordshire
	WD17 1EU
Independent Examiner	Martin Bailey FCA
	Goodman Jones LLP
	Chartered Accountants
	29-30 Fitzroy Square
	London
	W1T 6LQ
Accountants	Godfrey Wilson
	5th Floor, Mariner House
	62 Prince Street
	Bristol
	BS1 4QD
Bankers	CAF Bank Ltd
	25 Kings Hill Avenue
	Kings Hill
	West Malling
	Kent
	ME19 4JQ
	Metro Bank PLC
	One Southampton Row
	London
	WC1B 5HA

The Trustees present their report and independently examined financial statements for the Neurological Alliance for the year 1 July 2021 to 30 June 2022. The report and financial statements have been prepared in accordance with the Companies Act 2006 and the Charities Act 2011. The Trustees have adopted the provisions of the Statement of Recommended Practice (SORP) “Accounting and Reporting by Charities” (FRS 102) in preparing the report and financial statements. The report and financial statements will be laid before the members of the charity at the Annual General Meeting to be held on 15 November 2022. In preparation of this report, the Trustees had regard for the Charity Commission guidance on public benefit.

1. Our objects

Our principal objectives, as derived from the objects set out in our Articles of Association, are to advance the education of the public in all matters concerning neurological disorders by carrying out research and investigation into preventative procedures, treatment and the needs and care of persons affected by neurological conditions, and publishing the useful results thereof, and the relief of those persons in the United Kingdom of Great Britain and Northern Ireland who are receiving or have received treatment for neurological conditions.

We are the only collective voice for over 80 national charities, professional bodies, regional organisations and corporate organisations working together to transform neurological treatment, care and support.

2. What we set out to do in 2021-22

Our mission is to raise awareness and understanding of neurological conditions to ensure that every person diagnosed with a neurological condition has access to high quality, joined up services and information from their first symptoms, throughout their life.

Our strategic objectives, set at the Board away day in 2021, were to:

Increase the influence and involvement of people with neurological conditions
Increase and strengthen the collective voice of the neurological community
Increase and drive the national policy profile of neurology
Increase and support local action to improve neurological services
To build a sustainable organisation capable of bringing about change

The Annual Report of the Trustees for 2021/22 is set out under these strategic objectives.

Goal 1- Increase the influence and involvement of people with neurological conditions

Over 8,500 people with neurological conditions shared their experiences as part of the latest iteration of our national neurological patient experience survey, My Neuro Survey. We worked closely with member organisations, healthcare professionals, Neurological Alliances across the UK and, most importantly, with people affected by neurological conditions to develop and promote the survey. Between the end of October and early February, over 100 organisations promoted the survey online and more than 30 services providing care and support to people with neurological conditions distributed physical copies, weblinks and a language line option.

The data and free text responses underpinned a set of policy reports, “Together for the 1 in 6”, with both nation specific and a UK-wide versions. Importantly, we launched the #BackThe1in6” campaign calling on Governments across the UK to establish a Neuro Taskforce to provide political leadership, coordinate ongoing service improvement initiatives and promote collaboration in addressing common challenges including workforce shortages and waiting lists.

We launched the campaign at an event in Westminster alongside member organisations, clinical colleagues, a dozen MPs and Peers and people affected by neurological conditions. One of our supportive Peers, Lord Dubs, held a debate in the Lords following the launch, calling on Government to support our call for change. Peers from across the political spectrum showed their support for the campaign during the debate, and we hope to secure a similar debate in the Commons in 22/23.

More than 13,500 people have signed a petition supporting the campaign, which will be handed in to Government in early 2023.

Our campaign hashtag, #BackThe1in6 trended briefly on Twitter when the petition was launched on social media. In June we had 10.9 K profile visits on Twitter - the channel usually attracts between 2000 and 4000 profile visits per month. In June we had 556 mentions on Twitter (mentions in a month usually range between 70 and 120). Our posts and tweets have been widely shared and followers across Twitter, Instagram, Facebook and LinkedIn continue to increase.

The launch created 11 pieces of coverage in total in June, including television (Scotland – STV & BBC Breakfast) and radio and online press coverage in England. 12 people affected by neurological conditions volunteered to share their real-life stories in press, on our website and through newsletters, to support and promote the campaign and had their stories collected. More volunteers continue to come forward. Member organisations continue to back the campaign, sharing content on social media, and encouraging their communities to sign the petition and/or volunteer their stories.

In February 2022 Jessica Mansel joined the Alliance for one day a week to help set up a coproduction group of people affected by neurological conditions to inform the Alliance’s work, especially to develop the ‘Back the 1 in 6 campaign’. 12 people were selected from over eighty people coming from England, Wales, Scotland and Northern Ireland. The volunteers live with different types of neurological conditions including rare conditions. During April and May the volunteers worked with the team on the key messages and the best ways to communicate about My Neuro Survey. Two of them, Debbie Williams and Rhys Holmes joined us at Westminster for the launch with Debbie giving a keynote speech in which she urged the Alliance to ensure that notice was taken of the MNS reports and that they were not simply filed away. You can read more from Jess here and from Rhys here.

We would like to pay particular thanks to the Neurological Alliance of Scotland, Neurological Alliance Cymru and the Northern Ireland Neurological Charities Alliance (NINCA) for their contribution and tireless support to promote and develop the campaign. In addition, many thanks to the MS Society for unstintingly lending their time and resources to make this happen. We would also like to thank the Kinghorn family for their kind legacy donation, which provided much needed support to launch the reports and campaign.

Alongside My Neuro Survey, we have continued to partner with the Brain and Spine Foundation to deliver ‘Neuro Life Now’, a digital platform for people with neurological conditions to share their experiences. We worked with the Brain and Foundation to develop 6 new reports which include approximately 900 responses from people affected by neurological conditions about their experiences of care. The data has been used to inform debates in Parliament, call for support for women living with a neurological condition and to support work on the forthcoming UK Acquired Brain Injury Strategy. The platform itself is about to enter an exciting new phase of development, following generous support from the Sowerby Foundation and National Lottery.

Finally, we have been speaking up about the experience of people with neurological conditions throughout the pandemic. In particular, it is clear that the number of people waiting for specialist care is on the rise - the number of people waiting for an NHS neurology or neurosurgery appointment in June 2022 was 255,129 – an 85% rise since June 2020. We

have retained our position on the high level NHSE/I elective taskforce, Long COVID taskforce, and outpatient transformation working group for neurology. Our guidance on Patient Initiated Follow-Up has been published on the NHS Futures website to support outpatient transformation. We have been working with the high-level elective care recovery group to assess plans against the elective recovery fund.

Collectively, we have helped to ensure neurology and neurosurgery are very much part of wider strategic recovery planning at the highest levels of NHSE/I, although clearly there is much progress to be made.

Following reports from people affected by neurological conditions and healthcare professionals, we raised concerns with NHS England and NHS Improvement about the eligibility criteria for neutralising monoclonal antibodies (nMABs) for coronavirus and held a meeting together with a number of charities with the Shadow Health Minister on this topic.

Goal 2 - Increase and strengthen the collective voice of the neurological community

We have continued to provide shared spaces for members to connect, including via our policy group, mental health group and rare conditions group.

We worked with members and specifically with our mental health subgroup to shape a detailed response to the consultation on a 10-year cross-government plan for mental health and wellbeing. Our response highlighted the specific mental health and wellbeing challenges facing people with neurological conditions including the complex and poorly understood interplay between the physical and psychiatric, emotional and cognitive impacts of such conditions. We highlighted concerns about the workforce, particularly chronic shortages and geographical imbalances of specialist mental health practitioners, alongside calls for a review of local Mental Health Commissioning Policies to ensure equitable access to mental health support for everyone with a neurological condition. Our response was underpinned by data from My Neuro Survey and included relevant recommendations from our recent “Together for the 1 in 6” England policy report.

We retained our co-opted membership of the Royal College of Psychiatry Neuropsychiatry Faculty executive for another year with the position currently held by our Policy and External Affairs Manager, Sam Mountney. We were delighted to have the support of the faculty for our national neurological patient experience survey, My Neuro Survey.

We also met with the Council of the Royal College of Psychiatry alongside Ben, a carer, to discuss his personal experiences supporting his wife who lived with Huntington’s. A wide range of Faculties within the College expressed an interest in collaborating to develop improved support for people with neurological conditions and supporting the development of credentialling.

Our Rare Conditions Subgroup continues to meet quarterly providing a forum for members supporting those with rare neurological conditions to share intelligence and explore issues of mutual interest. The group has helped to shape responses to consultations including the recently enacted Innovative Medicines Fund and has helped to inform thinking and positioning on topics such as the UK Rare Diseases Framework and planned delegation of many specialised neuroscience from NHS England to Integrated Care Systems (ICSs). Sue Millman of Ataxia UK has provided the group with updates on the implementation of the UK Rare Diseases Framework. We have also strengthened our working relationship with Genetic Alliance UK, with reciprocal attendance of our Rare Conditions Subgroup and Genetic Alliances Patient Empowerment Group (PEG).

We completed work with RAND Europe to map out the feasibility of modelling specialist health workforce needs in the future in secondary and tertiary care. The work, which included data

kindly provided by members and associates from the Alliance, will soon be made available to our membership. The work concludes that it may be possible to map future workforce needs for medics and nurses, but it is unlikely this will be possible for allied healthcare professionals. On this basis, we will work with our associate members to map out the next stage of our work on the workforce, recognising this is an important priority for both people affected by neurological conditions and our membership. Our thanks to Merck, who provided funding to conduct the feasibility research.

We have also continued to support the roll out of the COVID Clinical Neuroscience Study (CNS), which is looking into the biological causes of neurological and neuropsychiatric impacts in people who have been hospitalised with COVID-19. The study, jointly conducted by Kings College London and the University of Liverpool, has already helped to enhance global understanding of these impacts, with more than 40 academic publications linked to the study since 2020. We have remained a committed member of the Patient and Public Involvement Panel, and also held a webinar with our members in January 2022 to heighten awareness of the study and initial findings.

Goal 3 – Increase and drive the national policy profile of neurology

This year marked an important moment for neuroscience, as NHSE/I committed to the appointment of National Clinical Directors for both neurology and neurosurgery and spinal surgery. Our focus nationally therefore has been to continue to support the work of the National Neuroscience Advisory Group (NNAG), ensuring transformation work within the NHSE/I has the experiences of people affected by neurological conditions at its core, and providing critical input into new NHSE/I structures ahead of the NCDs being appointed.

These appointments follow strong pressure from our membership – more than 30 groups from across neuroscience wrote to the NHSE/I Medical Director Stephen Powis in November 2021, calling for the appointment of NCDs. These new NCD posts represent a new dawn of clinical leadership within the NHS, and we are committed to working closely with them to ensure people affected by neurological conditions and our members are central to their work.

In parallel, we have worked closely with NHSE/I specialised commissioning to develop their plans for the future commissioning models for neuroscience, as well as to map out the changing role of the NHSE/I neuroscience Clinical Reference Group (CRG). The CRG, which will in future be split into two (neurology and neurosurgery) and chaired by NCDs, are likely to take a broader, more integrated focus to planning. In addition, we have worked with our fellow Patient and Public Voice (PPV) CRG representative, Phillip Anderson (MS Society) to support people with neurological conditions to share their experiences directly with the neuroscience CRG. This is the first time an NHSE/I CRG has taken such an approach, and will urge our forthcoming NCDs to adopt a similar approach in future.

We have continued to provide secretariat support and to co-Chair NNAG and National Intelligence Collaborative (NIC), with a focus on developing optimum pathways of care and defining good outcomes associated with good care.

In September 2021, we worked with members of NNAG to host an outcomes event that sought to define good outcomes in neurology. More than 50 people attended the day, which included presentations from a range of leaders and people affected by neurological conditions, about their proposed approach to defining outcomes. Ahead of the event, we worked with the Association of British Neurologists Advisory Groups and Specialist Interest Groups to develop a ‘long list’ of proposed clinical and activity outcomes. Patient groups were also asked to submit patient experience measures and patient reported outcomes to aid the discussion. The Defining outcomes in neurology report was published on the NNAG website early in 2022, and we are working with the ABN Quality Committee to develop an approach to collecting common outcomes across neurology services.

In addition, we have worked with NNAG to develop 12 optimum care pathways across neuroscience. The integrated pathways have been developed with clinical leaders across a range of neurological conditions, and vital input from people affected by neurological conditions and patient groups. We would like to thank everyone involved for their commitment and input to this work.

Finally, NNAG and NIC have worked together to develop a vision for services for people affected by neurological conditions. The plan will serve as an important ‘manifesto’ for our incoming NCDs, as they begin to map out their priorities when in post.

Our influencing efforts around the Health and Care Bill (and subsequent Act) focussed on cross-sector calls for stronger workforce planning provisions and much-needed changes to the social care cap to provide better support to working age adults who require social care and less-well off older people. Our parliamentary engagement predominantly focussed on the House of Lords with amendments on both issues secured and passed by Peers, disappointingly neither amendment was accepted by Government. As part of the Care and Support Alliance (CSA) Working Age Disabled Adults (WADA) group, we met with Care Minister Gillian Keegan and Minister for Disabled People, Chloe Smith to discuss social care support. Engagement with the Royal College of Physicians, who led the workforce amendment coalition, has continued with the Alliance joining the Inequalities in Health Alliance.

Our guidance on patient-initiated follow-up (PIFU) in neurology is was included on the NHS Futures outpatient transformation programme (OTP) workspace in April 2022. The platform has over 4600 members and the OTP workspace attracted over 125k views between July and September 2021. NHSE/I used its platforms to publicise the guidance and reach operational and transformation leads, regional leads, neurology clinicians and staff, through a variety of internal and external platforms including the Clinical Advisory Group, helping us to reach (and make ourselves known to) new key audiences. We also provided social media assets to facilitate the sharing of the guidance on the Outpatient Recovery & Transformation Programme LinkedIn page, which has 1000 followers. The guidance was also shared across our own platforms (members’ newsletter, social media and website).

Goal 4 - Increase and support local action to improve neurological services

This year, our work has increasingly focused on the local networks required to effectively engage with the right people within Integrated Care Systems, given their forthcoming responsibilities in the commissioning and provision of services for people with neurological conditions.

In particular, we held discussions with people affected by neurological conditions, our members, affiliates and healthcare professionals throughout the year about what they believe would constitute our shared aims and approach to engaging with ICS stakeholders. It is clear that collectively, the community would like to ensure people with neurological conditions have a voice within new structures, that we have common messaging and evidence across the Alliance, and that organisations are able to share their experiences of working with ICS stakeholders.

To this end, we will increase our focus on ICS engagement in this coming year and provide further opportunities for organisations across the Alliance to collaborate.

We have continued to hold regular meetings with members of the eight regional neurological alliance groups. These meetings provide the opportunity to provide updates on the work of the Alliance at national level and for regions to raise issues of concern. They report difficulties with funding and with other resources. Some Regional Alliance’s have also cited a need for

additional support from the National Neurological Alliance, although the specifics of this need to be understood and mapped out further. This work will be undertaken in 2022 – 23.

Nonetheless, they continue to speak for the people in their areas and have been seeking to engage with the ICS structures as these are put into place.

Goal 5 - To build a sustainable organisation capable of bringing about change

One of our key developments of the last year has been the establishment of a CEO forum for CEOs of our member charities, UK Neurological Alliances and Chairs of Regional Neurological Alliances. An initial meeting was held during NeuroFest November 2021, facilitated by Sarah Vibert of NCVO (National Council for Voluntary Organisations). This idea has proved to be popular with members with the two meetings in March and June 2022 (facilitated by Kripen Dhrona, British Polio Fellowship) being attended by twenty CEOs with lively and collaborative discussions. It was agreed that the group would continue to meet and to work on matters of common interest including local influencing and the impact of the cost of living crisis on people living with neurological conditions.

NeuroFest 2021 featured more than twenty speakers, including clinical directors, people affected by neurological conditions, representatives from NHSE/I and Trust Chief Executives. Needless to say we are hugely thankful to everyone who spoke at the festival and joined in the discussions.

We renewed our commitment to ensuring equity, diversity and inclusion are at the heart of what we do. We have worked closely with a small group of clinicians to develop a focussed literature review of evidence to suggest differences between sociodemographic groups in prevalence, incidence, access and experience of care amongst the ten most high prevalence neurological conditions. The evidence formed basis of ten academic posters at the Association of British Neurologist (ABN) conference in May 2022. Our particular thanks to our trustee Dr Arani Nitkunan, Dr James Mitchell, Dr Kit Wu and Micha Vidot, for their commitment and time dedicated to this project.

In addition, we conducted a light touch review of our recruitment processes, with a view to minimising risk of unconscious bias and to attract as a diverse a pool of candidates as possible. In 2022/23 We will continue to review our people policies with these aims in mind.

We conducted our annual survey of membership, and 34 members responded. Once again, the majority of members reported value for money of their membership, with 87% of respondents reporting this. Members felt we have a strong voice at a national level and provide a good space for collective action. Members did however report that people affected by neurological conditions could have a stronger voice in Alliance work, and do more to communicate changes in health policy. Our 2022/23 plans and new 5 year strategy have of course been strongly influenced by these results.

3. Our structure, governance and management

3.1 Trustees selection

We are governed by a Board of Trustees, made up of a minimum of three and a maximum of 14 people. This includes up to three independent trustees and 11 elected trustees.

In advance of each Annual General Meeting (AGM), all members are invited to send in their nominations for the Board. Details of the Trustee candidates are then circulated to all members

and votes are made by ballot or poll at the AGM or sent in advance to the Chair using a proxy form; each member organisation is entitled to one vote, placed at the AGM.

After completing a three-year term, each Trustee will stand down from the Board. Trustees who have completed only one term may stand for re-election; those who have served two consecutive terms must stand down for one year before they may stand again for the Board.

On joining the Alliance Board, all new Trustees undertake a tailored induction programme. The Trustees, who are also directors for the purpose of the Companies Act, and who served during the year are listed in section 5.1.

3.2 Structure

We are a company limited by guarantee (no 02939840) and a registered charity (no 1039034). We are governed by Articles of Association and Byelaws. Our main activity is to secure the highest standards of care and treatment for every person affected by a neurological condition.

Our Board of Trustees is responsible for our governance and strategy and meets every quarter. Our Chief Executive is responsible for implementing the strategy and reports on its progress at the Board meetings. The Chief Executive reports directly to and is supervised by the Chair. They speak and meet regularly to discuss Alliance business.

Communication, both formal and informal, between Trustees and staff is frequent and effective.

3.2.1 Staff

Georgina Carr Chief Executive and Company Secretary (from January 2020 – present)

Caroline Davies Administration and Membership Officer (From October 2019 – present) Miranda Lloyd Communications and External Affairs Officer (March 2021 – present) Jessica Mansel Co-production Co-ordinator (February 2022 – present) Sam Mountney Policy and External Affairs Manager (June 2021 – present)

3.2.2 Members

Full membership is open to national voluntary organisations who represent patients, service users, families and carers (non-statutory, non-profit) organisations, who, in addition to the full benefits of membership, will have a right to vote at the AGM, have the right to nominate a trustee and an opportunity to influence our strategic direction. Subscriptions are income assessed.

Full affiliate membership is open to Regional Neurological Alliances operating on a nonstatutory, non-profit basis. Affiliate members will pay a subscription rate which is not income assessed.
Associate status is open to non-profit organisations, including professional associations and statutory authorities, who will play an active part in the Alliance but do not have the right to nominate a trustee or vote at the AGM. Subscriptions are income assessed.
Regional Associations of Neurological Organisations are also associates. They are staff led groups and will pay a subscription rate which is not income assessed.
Corporate supporter status is open to for-profit organisations, who cannot vote at the AGM or nominate a trustee.
Reciprocal partners are normally umbrella organisations whose aims and objectives match well with those of the Alliance. They cannot vote or influence our strategic direction.

Members 2021-2022

Members 2021-2022

Ataxia UK		www.ataxia.org.uk
Autistica		www.autistica.org.uk
Batten Disease Family Association		www.bdfa-uk.org.uk
Brain and Spine Foundation		www.brainandspine.org.uk
Brain Research UK (formally Brain Research Trust)		www.brainresearchuk.org.uk/
Brain Tumour Research		https://www.braintumourresearch.org/
British Polio Fellowship		www.britishpolio.org.uk
Cavernoma Alliance UK		www.cavernoma.org.uk
Childhood Tumour Trust1		https://www.childhoodtumourtrust.org. uk/
Cure Parkinson’s2		https://cureparkinsons.org.uk/
CMT United Kingdom		www.cmt.org.uk
The Daisy Garland		www.thedaisygarland.org.uk
Different Strokes		www.differentstrokes.co.uk
Downs Syndrome Research (DSRF)		www.dsrf-uk.org
Dravet Syndrome UK		https://www.dravet.org.uk/
Dystonia Society		www.dystonia.org.uk
Epilepsy Action		www.epilepsy.org.uk
Epilepsy Research UK		www.epilepsyresearch.org.uk
FD UK		www.familialdysautonomia.co.uk
FND Action		www.fndaction.org.uk
FND Hope		www.fndhope.org
GAIN (Guillain-Barré and Associated Inflammatory Neuropathies)		www.gaincharity.org.uk
Glut 1 Deficiency UK1		https://glut1deficiency.org.uk/
HereditarySpastic Paraplegia Support Group1		https://hspgroup.org/
Huntington's Disease Association		www.hda.org.uk
IIH UK		https://www.iih.org.uk/
Matthew’s Friends		https://www.matthewsfriends.org/
Migraine Trust		www.migrainetrust.org
Motor Neurone Disease Association		www.mndassociation.org
Multiple Sclerosis National Therapy Centres		www.msntc.org.uk
Multiple Sclerosis Society		www.mssociety.org.uk
Multiple Sclerosis Trust		www.mstrust.org.uk
Multiple System Atrophy Trust		www.msatrust.org.uk
Myaware		www.myaware.org
Myelopathy.org		https://myelopathy.org/
Narcolepsy UK		www.narcolepsy.org.uk
The National Hospital for Neurology And Neurosurgery Development Foundation		www.nationalbrainappeal.org
National Tremor Foundation		www.tremor.org.uk
Nerve Tumours UK1		nervetumours.org.uk
Overcoming MS		www.overcomingMS.org
Parkinson's UK		www.parkinsons.org.uk

Members (continued)

*Members(continued)***
Polio Survivors Network		www.poliosurvivorsnetwork.org.uk
Polio Warriors (The World-Wide Fellowship of Polio Warriors)1		www.poliowarriors.org
PSP Association		www.pspeur.org
Ring 20 Research and Support UK CIO		ring20researchsupport.co.uk/
Spinal Muscular Atrophy Support UK		smauk.org.uk/
Spotlight YOPD		spotlightyopd.org/
SUDEP Action		www.sudep.org
Sue Ryder		www.sueryder.org
Tourettes Action		www.tourettes-action.org.uk
Transverse Myelitis Society		www.myelitis.org.uk
Trigeminal Neuralgia Association UK		www.tna.org.uk
UK Acquired Brain Injury Forum		www.ukabif.org.uk
Associates
Association of British Neurologists		www.theabn.org
Association of Chartered Physiotherapists in Neurology (ACPIN)		www.acpin.org.uk
British Association of Stroke Physicians (Now British and Irish association of Stoke Physicians)1		www.biasp.org
British Paediatric Neurology Association		www.bpna.org.uk
Division of Neuropsychology (British Psychological Society)		www.bps.org.uk/networks-and- communities/member- microsite/division-neuropsychology
British Society of Rehabilitation Medicine1		https://www.bsrm.org.uk/
The Independent Neurorehabilitation Providers Alliance1		https://in-pa.org.uk/
The Neurology Academy		https://neurologyacademy.org/

Associate Regional Groups

East Midlands Association of Neurological Organisations
South West Alliance of Neurological Organisations		www.swano.org
Yorkshire and Humberside Association of Neurological Organisations		www.yhano.org.uk
Corporate supporters
AbbVie Allergan		www.abbvie.co.uk
Biogen		www.biogen.uk.com
Boston Scientific		https://www.bostonscientific.com
Genzyme		www.genzyme.co.uk
Lundbeck1		https://www.lundbeck.com/uk
Merck Serono		www.merckserono.co.uk
Novartis		www.novartis.co.uk
Teva UK Limited		www.tevauk.com
Roche		https://www.roche.com/
UCB Pharma Ltd		www.ucb.co.uk

Regional Neurological Alliances	Regional Neurological Alliances
Black Country Neurological Alliance		www.blackcountryneuroalliance.org.uk
Bolton Neuro Voices		www.boltoncvs.org.uk
Greater Manchester Neurological Alliance		www.gmna.co.uk/
Hampshire Neurological Alliance		www.hantsneuroalliance.hampshire. org.uk
Lincolnshire Neurological Alliance		www.lincolnshire-neurological- alliance.org.uk
Merseyside and Cheshire Neurological Alliance		www.neurosupport.org.uk
Neuro Key (formerly Tees Valley, Durham, and North Yorkshire Neurological Alliance)		www.na-tvdny.org.uk
West Berkshire Neurological Alliance		www.wbna.org.uk

Reciprocal members

Reciprocal members
National Voices		https://www.nationalvoices.org.uk/
Neurological Alliance of Ireland		www.nai.ie
Neurological Alliance of Scotland		www.scottishneurological.org.uk
Neurological Alliance of Wales		www.walesneurologicalalliance.org.uk

New members in 2021-22
Ceased members in 2021-22
Organisation closed in 2021-22

3.2.3 The way we work

As a membership organisation, our whole ethos is to work in partnership. We work across the neurological community to identify common priorities for people affected by a condition and then seek to influence, shape and support policy development to reduce inequalities, enhance their outcomes and, where possible, help them live for longer and in better health. Our activities are therefore based on a clear and shared sense of purpose. We work with the Trustees, the Policy Group and Policy Steering group to determine our strategy and plans.

3.2.3a The Policy Group

Any member of the Alliance can take be part of the Policy Group. The Group’s purpose is to:

Make recommendations to Alliance Trustees on Alliance policy and activity, ensuring that these reflect the needs and objectives of its member organisations
Build collective ownership of the Alliance beyond staff and Trustees and to promote teamworking across the member organisations
Provide a forum for policy and campaigns staff of member organisations to share information and provide mutual support
More closely align member organisations’ priorities with the collective needs of the Alliance
Ensure that all member organisations, large and small, can contribute to the work of the Alliance.

3.2.3.1ai Policy Group leads

Sam Carney Health Policy and Improvement Lead, Parkinson’s UK, Co-Chair (appointed May 2021) Dawn Golder Executive Director, FND Hope UK, Co-Chair (appointed Feb 2021)

3.3 Risk management

The Trustees have assessed the major risks to which the charity is exposed and are satisfied that systems are in place to mitigate exposure to major risks. A risk management strategy, reviewed annually, is in place. We also have a risk-based reserves policy which mitigates one of our main financial risks, in terms of having over three quarters of our income coming from just 13 funders (four charities, ten corporates) .

4. Public benefit

Our work benefits people affected by a neurological condition and those who represent them. Sections 1 and 2 of this report set out our objectives, report on our activities and successes, and set out our plans for the current financial year.

The Trustees consider that they have complied with their duty in s4 of the Charities Act 2011 to have due regard to the guidance on public benefit published by the Charity Commission. The Trustees have considered this matter and concluded:

That the aims of the organisation continue to be charitable
That the aims and the work done give identifiable benefits to the charitable sector and both indirectly and directly to individuals in need
That the benefits are for the public, are not unreasonably restricted in any way and certainly not by ability to pay
That there is no detriment or harm arising from the aims or activities.

5. Reference and administrative details

The Alliance is a registered charity (1039034) and company limited by guarantee (02939840) registered in England. The Alliance's registered office was, from 21[st] September 2019, The Junction, Station Road, Watford, WD17 1ET.

5.1 Trustees and the nominating organisation

Katharine Crawford	Parkinson’s UK
Kripen Dhrona	British Polio Fellowship (appointed Nov 2021)
Marc Smith	Brain and Spine Foundation (Vice-Chair)
Chris James	Motor Neurone Disease Association
Alan Bowers	Sue Ryder (appointed Nov 2021)
David Martin	Multiple Sclerosis Trust (re-appointed Nov 2021, Chair)
Caroline Morrice	Guillain-Barre and Associated Inflammatory	Neuropathies
	(Treasurer)
Sarah Rawlings	MS Society
Cath Stanley	Huntington’s Disease Association
Amanda Swain	UK Acquired Brain Injury Forum (re-appointed Nov 2021)
Angie Pullen	Epilepsy Action (stepped down July 2022)

During the year the Board, again, co-opted three independent Trustees with the aim of achieving greater diversity on the board in terms of the professional backgrounds of members. The three co-opted trustees are:

David Garmon-Jones appointed February 2018, reappointed February 2021 Ralph Gregory appointed February 2018, reappointed February 2021 Arani Nitkunan Appointed July 2020 Alison Fuller Appointed August 2022

5.2 Professional advisors

Bankers CAF Bank Ltd, PO Box 289, West Malling, Kent, ME19 4TA Metro Bank PLC, One Southampton Row, London, WC1B 5HA Accountants Godfrey Wilson, 5th Floor, Mariner House 62 Prince Street Bristol BS1 4QD Independent Examiners Goodman Jones LLP, 29-30 Fitzroy Square, London W1T 6LQ

6. Finances

6.1 Investment

Article 5.1.23 empowers the Alliance, with advice from a financial expert, to invest the funds of the Alliance as it sees fit, with consideration of the the suitability of investments and the need for diversification.

6.2 Subscriptions

Subscription rates are determined by the organisational income of each member and associate. Subscriptions for affiliate members are at a fixed rate.

6.3 Reserves policy

A reserves policy was agreed by Trustees during 2021. This policy is a risk-based policy, to reflect the reality that any reduction in income or increasing in costs would take place over a period of time.

Having considered the risks, Trustees consider it prudent that reserves should be maintained in order to cover the loss of income from one third of the significant income sources. This equates to approximately £55,000.

At the end of the year reserves of £58,306 were held, of which £5,234 (2021: £9,165) was held in restricted funds.

6.4 Financial position

Income from membership subscriptions increased slightly to £96,883 (2020/21: £96,652). In parallel, the corporate funding has increased from £109,180 to £110,296. We also received charitable donations totalling £5,200.

We also received generous support from Merck to develop a new report on modelling future health and care workforce needs, totalling £2,000.

Overall, there is a deficit of £60,267 (before transfers) on the unrestricted funds (2020/21 surplus of £41,646) and a deficit of £19,632 (before transfers) on restricted funds (2020/21: deficit of £11,238). This leaves an overall deficit of £64,198 (2020/21 surplus of £30,408) for the year.

6.5 Trustees’ responsibilities statement

The Trustees (who are also directors of The Neurological Alliance for the purposes of company law) are responsible for preparing the Trustees’ Annual Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company law requires the Trustees to prepare financial statements for each financial year, which give a true and fair view of the state of affairs of the charitable company and of the incoming resources and application of resources, including the income and expenditure, of the charitable company for that period. In preparing these financial statements, the Trustees are required to:

select suitable accounting policies and then apply them consistently;
observe the methods and principles in the Charities SORP 2019;
make judgements and estimates that are reasonable and prudent;
state whether applicable UK Accounting Standards have been followed, subject to any material departures disclosed and explained in the financial statements; and
prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charitable company will continue in operation.

The Trustees are responsible for keeping adequate accounting records that disclose with reasonable accuracy at any time the financial position of the charitable company and enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charitable company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

In so far as the Trustees are aware:

there is no relevant information of which the charitable company’s independent examiner is unaware; and
the Trustees have taken all steps that they ought to have taken to make themselves aware of any relevant information and to establish that the independent examiner is aware of that information.

6.6 Independent Examiners

At the AGM in November 2021, members agreed to delegate responsibility for selecting the Neurological Alliance’s Independent Examiners for the forthcoming year and 2021-2022 accounts to the Board of trustees.

The Board decided to appoint Goodman Jones LLP to be our independent examiner for 2021/22.

6.7 Small company provisions

This report has been prepared in accordance with the provisions applicable to companies entitled to the small companies exemption.

On behalf of the Board of Trustees

David Martin

Chair, Board of Trustees

Date: 18-11-22

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COMPANY REGISTRATION NUMBER 02939840

THE NEUROLOGICAL ALLIANCE

TRUSTEE ANNUAL REPORT

LETTER FROM THE CHAIR

David Martin, Chair, The Neurological Alliance

THE NEUROLOGICAL ALLIANCE

ANNUAL REPORT AND ACCOUNTS

YEAR ENDED JUNE 2022

1. Our objects

2. What we set out to do in 2021-22

Goal 1- Increase the influence and involvement of people with neurological conditions

Goal 2 - Increase and strengthen the collective voice of the neurological community

Goal 3 – Increase and drive the national policy profile of neurology

Goal 4 - Increase and support local action to improve neurological services

Goal 5 - To build a sustainable organisation capable of bringing about change

3. Our structure, governance and management

3.1 Trustees selection

3.2 Structure

3.2.1 Staff

3.2.2 Members

Members 2021-2022

Members (continued)

Associate Regional Groups

Reciprocal members

3.2.3 The way we work

3.2.3a The Policy Group

3.2.3.1ai Policy Group leads

3.3 Risk management

4. Public benefit

5. Reference and administrative details

5.1 Trustees and the nominating organisation

5.2 Professional advisors

6. Finances

6.1 Investment

6.2 Subscriptions

6.3 Reserves policy

6.4 Financial position

6.5 Trustees’ responsibilities statement

6.6 Independent Examiners

6.7 Small company provisions

David Martin

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