2022-04-05-accounts - Pathfinders Neuromuscular Alliance

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hfin ers neuromuscular alliance ANNUA REPOR 20 DECEMBER 11 2022

01. Cover 02. Contents 03. Chair of Trustees Foreword 04. Mission, Vision and Values Charitable Objectives 06. Our Aims 07. Our Aims 08. CEO'S Reflections 09. Key Achievements 10. Achievements Against Objectives & Financial Review Organisational Development, Support & Advocacy 12. Uplift & Content Creators 13. Online Skills & Transition Research 14. Housing Accessibility Campaign Training for PAS and Carers 16. Acknowledgements Pathfinder5 Neuromuscular Alliance STRATEGIC PLAN FOR 2022-2023

CHAIR OF TRUSTEES Pathfinders Neuromuscular Alliance has made huge strides this year. A big thank you to dedicated staff, volunteers and supporters for their part in creating such a supportive space, reaching out to others and building on our reputation as a user-led organisation. There have been a number of projects running and more in the planning stages. The PA Training modules are an example of how the charity listens, identifies a need and does something about it. Congratulations to all involved in bringing this project to life. 4¢ With the pandemic still very much present, the online socials have played a vital role in keeping in touch, enabling us to share our experiences and support each other. The Uplift project will also provide opportunities to connect with each other and develop skills. We look forward to seeing how this project develops. Sarah Rose - co-chair of Trustees This has been a period of stability. building on foundations and consolidating the charity's position. There is much going on in the background that is not always visible for example, the research project on Transition and the campaigning about Personalised Care needs. Always keeping our core values in mind, the coming year is going to be an exciting one for Pathfinders. Vicky Mozley- co-chair of Trustees Co-chair of the Board of Trustees Pathfinder5 Neuromuscular Alliance STRATEGIC PLAN FOR 2022-2023

MISSION Pathfinders Is a user-led organi5ation by and for people with muscle- weakening conditions. We want everyone to have choice and control over where and how they live their lives. with access to peers, community and connection. We offer social and educational opportunities, providin8 advice, information, support and advocacy, as well as campaigning, and running projects designed to help our members overcome barriers. VISION We want to build a society in which people with muscle-weakenin8 conditions are able to lead full. expansive, and self-determined lives. We believe social care and healthcare should be easily accessib11e, and treatments should be publicly funded and freely available. We recognise the skills, aspirations. and achievements of our members. and look to a world which enables everyone to reach their f ull potentiaL VALUES Pathfinder5 believes in: Bein8 a user-led or8anisation Bein8 diverse and inclusive Recognising everyone has different situations. achievements, skill5, and aspirations Empowering our members The value of collective experience Working constructively and collatrM)ratively with other organisations Campaigning for change Creating a positive. fun. and engaging environment Pathfinder5 Neuromuscular Alliance STRATEGIC PLAN FOR 2022-2023

CHARITABLE OBJECTIVES 1. The promotion of social inclusion of people with neuromuscular conditions who are socially excluded f rom society, or parts of society as a result of having Muscular Dystrophy and related neuromuscular conditions by: a) Providing a network of groups that encourage and enables them to participate more eff ectively with the wider community, b) Increasing or co-ordinating opportunities for them to engage with organisations and service providers to enable those providers to adapt services to better meet their needs, c) Raising public awareness of the issues affecting them in aLI areas relating to having a neuromuscular condition, d) Providing support to those between the age of18 and 30 who are socially excluded to establish and grow a business or enterprise to relieve their needs and assist them to integrate into society. 2. To promote and protect the physical and mental health of people with Muscular Dystrophy and related neuromuscular conditions in the United Kingdom as the trustees shall determine. Pathfinder5 Neuromuscular Alliance STRATEGIC PLAN FOR 2022-2023

OUR AIMS Every year, we look at our aims as a charity, and assess what we have done to achieve those aims. This helps us understand whether we are providing the community with the things we have said we will offer as a charity. To provide a voice for adults living with Muscular Dystrophy and related neuromuscular conditions We have engaged on matters of policy, including those around the COVID-19 pandemic. housing. and access to treatments for people with Spinal Muscular Atrophy To provide information. advice and peer support to adults living with Muscular Dystrophy and related neuromuscular conditions We have continued to manage peer facilitsted support through our online forum To provide a forum for adults living with Muscular Dystrophy and related neuromuscular conditions to share experiences, ideas and opinions in complete confidence We have created and updated website resource5, and run a range of workshops, talks, and discussion events that have allowed adults with muscular dystrophy and related neuromuscular conditions to network. seek support. and offer support to one another. Pathfinders Neuromuscular Alliance ANNUAL REPORT 2021-22

To identify. promote, and develop best practice, innovative treatments and technologies for adults living with Muscular Dystrophy and related neuromuscular conditions. We have identified challenges in the housing market and made recommendations about increasing the stock of accessible housing. We have also supported campaigns for treatments for Spinal Muscular Atrophy to be available to appropriate adults. We have carried out research into the process of transitioning to adulthood for people with DMD and are currently disseminatingthose findings and looking to UtiSe them for policy inf luence To campaign and influence treatments for adults living with Muscular Dystrophy and relaled neuromuscular conditions within health and local authorities, government, relevant professionals. disability organisations and charities. We have been involved with a range of campaigns, with a particular focus on housing, social ca, and personalised care To work with health and local authorities, overnment, disability organisations and charities in improving care, support and services for adults living with Muscular Dystrophy and related neuromuscular conditions. As well as our direct support and advocacy work and our housing research and campaigns, we have led a campaign on allowing people acce55 to their Personal Assistants IPAS) or carers while in hospital, and developed a training package for PAS on supporting people with muscle-weakeningconditions To increase awareness of adults living with Muscular Dystrophy and related neuromuscular conditions. Through designingtrainingfor PAS and carers and our campaign work, we have increased awareness of adults with muscular dystrophy and related conditions Pathfinders Neuromuscular Alliance ANNUAL REPORT 2021-22

REFLECTIONS During this financial year, the COVID-19 pandemic ha5 continued to affect our members, and radically limit our ability to undertake in-person work. We have, however. continued to provide a wide range of services online, including support and advocacy. training and development. advice and information, and research and campaigns. Jamie Hale CEO We have been able to develop projects applied for during the previous financial year, ensuring that we have continued to support people with DMD specifically, whilst also widening our provisions for people with other muscle-weakening conditions. The events and programmes we have run to benefit people with muscle-weakening conditions including direct 1..1 support and advocacy, supporting and managing peer-facilitated discussion and advice spaces, running social events, and leading on a wide range of projects. includin8 research into transition to adulthood for young people with Duchenne Muscular Dystrophy (DMD), designing and running a training programme for Personal Assistants {PAs) of people with muscle-weakening conditions. running an 'online skills, training project for people with DMD. and running an accessible housing campaign. We also put considerable time into updating our procedures, including a new membership process and fundraising guide. Finally. we began the process of running UpLift. a National Lottery funded project which will run for four years. supporting young people aged 18-30 to build self-advocacy and campaigning skills through a series of online and in-person events. Jamie Hale Pathfinders Neuromuscular Alliance ANNUAL REPORT 2021-22

KEY ACHIEVEMENTS The first independent-living based training programme for PAS and carers designed and led by people with muscle-weakening conditions confident in th to r4 The first research project on the experiences of people with DMD, led by people with DMD themselves, giving people the chance to develop their academic skills, and have research published so that I could use I wanted to join the project academic research skills to help produce research which may directly benefit others Ivith DND and other neuromuscular conditions. c, e¥sit Projects supporting people with DMD to develop skills as online freelancers, whilst creating resources for the community - where I felt this improved my confidence and helpedme a lot in talkin8 to newpeople Pathfinders Neuromuscular Alliance ANNUAL REPORT 2021-22

ACHIEVEMENTS AGAINST OBJECTIVES SET In our last strategic Pn, we prioritised organisational and financial stabilisation and development. increased engagement, information and advice, running campaigns, and events. and securin8 funding applications for future projects. We almost completed our policy review, and have the remaining policy development in progress. We also moved to more resilient financial management software, allowing for us to better analyse our f inancial situation. reflecting our organisational growth. All our projects are proceeding well and comfortably within reporting deadlines and requirements. and we have added a lot of valuable resources to our website. which we continue to do. Where we have stru8gled to reach our objectives, this has been due to limited staff capacity and time - a sector-wide problem, and one we are endeavouring to resolve by trying to create a situation in which staff are not always expected to be working at capacity. FINANCIAL REVIEW In our last stratewc plan we had the objective of £10,000 of community fundraising during the year. We did not achieve this objective, but identified a number of factors that affected this, and intend to focus on brand. identity, and marketing to support our community fundraising work going forward, alongside applying for funds for this important work. We set out different objectives for grant fundraising and comfortably acheived those. We are principally funded by grant-making organisations, including the Tudor Trust and National Lottery, by government bodies such as SkilL5 for Care, and by pharmaceutical companies including PTC TherapeutlC5. We are also funded in partnership working with other neuromuscular organisations such as Duchenne UL. The funding we have secured from the National Lottery witL allow us to run a multi-year project titled UpLift, developing campaign and self-advocacy skills in people with muscle-weakening conditions. We are confident in the ongoing reserves situation and in the financial stability of the organisation. Pathfinders Neuromuscular Alliance ANNUAL REPORT 2021-22

OUR WORK ORGANISATIONAL DEVELOPMENT We continued to work with jamie Hale and lon Hastie as CEOS, and had a significant number of staff across the year including: Michaela Hollywood Suzanne Glover Cath McNicol lacqui Adeniji-williams Adam Langley julian Fiorentini Olivia Morgan Melissa Gordon Sanjeev Mann We focused on building capacity with regard to social media and membership administration. Our social media work was carried out primarily by Sanjeev Mann whilst funded by the Tudor Trust as a development off icer, and included commissioning blogs and articles as well as day to day management and growth. This has benefited our members through the increased awareness and outreach that Pathfinders now has. By employing Kate Mellor as an administration assistant. we were able to design new membership processes and StamIlne many of our administration and payroll tasks. This has benefited our members in that less of our charity resource is spent on administration and payroll, meaning members are better contacted and supported, and that staff time is able to be managed to maximise member benefit. SUPPORT AND ADVOCACY We have continued our 1.1 support and advocacy work, assisting members, families, and professionals around them. The two key areas of need we have identified have been around access to social care and to employment. This has had a significant impact on the individual beneficiaries. As well as supporting individuals with these processes, we have also ensured that we are providing information for groups who need it. This includes running a series of sessions around work for people with DMD on the Online Skills project, and the training course we designed for Personal Assistants. with the intention of ensurirE better quality support for people with muscle-weakening conditions. This has allowed our work to have a benefit for the wider community of people with muscle-weakening conditions that we serve, regardless of their membership of the organisation. Pathfinders Neuromuscular Alliance ANNUAL REPORT 2021-22

OUR WORK PROJ ECT: UpLift: Disability Advocacy Project We received a funding agreement for UpLift from the National Lottery a youth development project focused on supporting people to build skills in areas including self- advocacy and campaigns, whilst also focusing on an independent adulthood with muscle- weakening conditions. We set up a steering committee and began work on the pilot year, which will run from 2022 to 2023 and includes a range of events on adult living with neuromuscular conditions, including around sex, relationships, driving, care. housing, and independence. PROJ ECT: Content Creators Academy At the start of the year we started our Content Creators Academy- Specifically for people living with DMD. This offered training in working f reelance as a conter)t creator with DMD, alongside offering paid work in content creation. supporting people in building skills and a portFolio, whilst producing content relevant to other young people with DMD (and other muscle-weakening conditions). At project outset, we delivered 3 workshops online to support freelance content creators: 5Wayfj to a hfin ers vJkat ACE iihikniofS? O Regular heaY checks At kA4 kAtl+ &14 O Sleep . i o w Fiart a4d¢ ACE thk.44. O Water J4yd a¢y 1.Becoming a disabled key influencer 2.Permitted work and disability benefits 3. Business planning as a freelancer, and Access to Work funding 1 r¥tr 6. rf b44t od vJKat 14 Eioct(LL)Yd Eot ¢f 6th, We then began to commission work including articles. infographics. and a podcast, which we're looking forward to completing and publishing over the next year. O Medicine vjkatr 14 Eckocadi PLE W¥¢4 th*t5 Pathfinders Neuromuscular Alliance ANNUAL REPORT 2021-22

OUR WORK PROJECT: Online Skills Trainin We designed a proFct for people with DMD, connecting young people with DMD, adults with DMD, and parents of young people with DMD, focused on Encouraging Independence, through online webinars and coaching sessions titled Ask the Adults, Ask the Parents, and Ask Gen Z, leading to open conversation and connection. Acc•M all Areas? How people th n¢vMs¢1ar conditior15 live across the world We also worked with two cohorts of young people with DMD to support them in developing skills to run online events, through weekly event planning meetings and workshops led by people with muscle-weakening conditions. These covered research. marketing, flyer design, and public speakin& The workshops empowered young people with DMD to run online events, including Shut Up and Drive - an event on driving with DMD, Wheelie Good Holidays an event on travelling with DMD, Anime Explained, and Access All Areas. bt èprn AKiMe ExpldiKed iys Koljusl corlooK I thI)I I The project had a significant impact on a wide range of participants. One mother noted that her son had gained some confidence and "it was a good opportunity for him to engage with others online and do something differenv. Another participant said "I felt this improved my confidence and helped me a lot in talking to new people" and others said they had become more confident in "presenting in front of people" "workingas part of a team" and "being able to speak clearly" 2pm OKllxe FREE RESEARCH: Transition to Adulthood with DMD We have continued into a second year of our peer-led research into transition to adulthood for people with DMD. This research has developed significantly with important findinES emerging. Our Research Officer. Dr Suzanne Glover worked with peer researchers to carry out interviews acr055 Europe, analysing them to undeistand how adults with DMD understand their experience5 of transitioning to adulthood. It showed how young adults with DMD often see the wodd as incompatible for people with DMD when considering many of the important milestones of transition to adulthood. This includes transitions in educational settings. post-educational opportunities. as well as navigating new and existing social relationships entering adult life. The research suggests that much of this perceived incompatibility is fuelled by experiences of ableism and subsequent internalised ableism. Once the analysis has been completed, we wll be focusing on disseminating these findings. hoping to use them to create change. Pathfinders Neuromuscular Alliance ANNUAL REPORT 2021-22

OUR WORK RESEARCH: Housing Accessibility Campaign This took place from April to October, and was a research study and scoping exercise to inform future work on housing accessibility foradults with DMD. Dr lon Rey-Hastie (CEO at Pathfinders) worked with Dr Janet Hoskin at the University of East London to carry out research into future housing acce55ibility for adults with DMD. Thi5 found that there 15 not enough accessible housing in the UK and not enough information available for people to find current accessible housing. This led us to make key recommendations, including. Information about finding accessible housing on the private housing market needs to be readily available and accessible for disabled people Information about finding social housin8 needs to be readily available and. accessible for disabled people Government and Local Authorities must commit to increase the provision of accessible housing Local Authority housing services should be joined up with social care and health sUPPOrt This research has led to a better understanding of the housing market for disabled people, with benefit to disabled people more broadly, outside our membership. but grounded in a specific knowledge of the needs of people with neuromuscular conditions. The knowledge has also informed much of our support and advocacy work around housing. "Working on the accessibility housing research project illuminated to me the amount of work there is yet to be done to get enough suitable accessible housing in the UK. On a personal leveL working on this project was my first employment and gave me confidence and I built on skills I had gained at university. The project also led to my following two employed positions at Pathfinders" Kate Mellor Pathfinders Neuromuscular Alliance ANNUAL REPORT 2021-22

OUR WORK PROJECT: Training for PAS and Carers Pathfinders identified that people with muscle-weakening conditions often have specific requirements in accessing personal support, and that having a training programme for Personal Assistants (carers) of people with muscle-weakening conditions would be very beneficial. Through informal polling and di5CUs5ions with members. we identified Significant challenges Wlth recruitment and retention. and a lack of training material which both explored the common factors shared by people with muscle-weakening conditions, and the role of the PA. Thi5 training programme offeT5 a transferable certification of completion. allowing PAS to move between roles while demonstrating knowledge of the needs of our community. We developed 13 modules in total: 1. Introduction to neuromuscular conditions 2. Independence and the social model of disability 3. Neuromuscular conditions and common emergencies 4.Common equipment used by people with neuromuscular conditions 5.Ventilation 6. Posture. skin and position 7. Swallowing and nutrition 8. Physiotherapy and exercise 9.Wor*ing in someone's home and workplace 10. Supporting disabled people as parents 11. Respect, intimacy and personal care 12.Supporting people with sex and relationships 13.Supporting people with their emotional health bss r4 ie KSS The modules were all led by people with muscle-weakening conditions, with specialists contributing where appropriate, and were delivered across a range of training days. I've been employing carers for over 10 years and I've never come across training that is so relevant and up-to-date for someone with a muscle wasting condition. I frequently send carers on mandatory training which does not cater for any of my specific care needs. I feel this can have a negative impact on the quality of my care and staff morale. I can honestly Say that there has been a buzz in the air with my care team over the past few weeks because of thi5 training. Following the end of this project, these modules are available for free online for anyone to take- whether a PA or carer, a friend, a family member. or a professional. offering a range of information in what muscle- weakening conditions are and how they affect people. Pathfinders Neuromuscular Alliance ANNUAL REPORT 2021-22

Prepared by jamie Hale fof the Board of Trustees, November 2022 With thanks to: The staff, trustees and volunteers who keep Pathfinders going. and the members who generously share their advice and support in our facebook groups and at our events, Thank you for your continued support of Pathfinders Contact: General - infotDpathf indersalliance.org.uk Trustees - trusteesdjpathf indersalliance.org.uk CEO - jamie Hale jamieopathfindersalliance.org.uk Pathfinders Neliromuscular Alliance ANNUAL REPORT 2021-22

Charity Name No (if any) Pathfinders Neuromuscular Alliance 1155884 Receipts and payments accounts For the period from Period start To Period end 6th April 2021 5th April 2022	CC16a

Section A Receipts and payments

----- Start of picture text -----
Unrestricted Restricted Endowment Total Last year
to the nearest to the to the nearest to the to the nearest
£ nearest £ £ nearest £ £
A1 Receipts
Fundraising 5,463 - - 5,463 4,149
Grants 37,565 195,837 - 233,401 78,789
Reimbursements 5,199 - - 5,199 3,651
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross 48,226 195,837 - 244,062 86,589
A2 Asset and
- - - -
- - - - -
Sub total - - - - -
Total receipts 48,226 195,837 - 244,062 86,589
A3 Payments
Bank interest and charges 102 12 X - 114 69
Employment costs 29,396 79,995 - 109,391 49,419
Insurance, governance, and 4,078 2,045 - 6,123 2,693
Office, equipment and 7,799 - - 7,799 3,500
Project and event costs 53 11,682 - 11,735 354
Promotional activity 210 - 210 168
Payment and transaction costs 2 - - 2 1,030
- - - - -
- - - - -
Sub total 41,430 93,944 - 135,374 57,233
CORRECT CORRECT
A4 Asset and
- - - -
- - - -
Sub total - - - - -
Total payments 41,430 93,944 - 135,374 57,233
Net of receipts/(payments) 6,795 101,893 - 108,688 29,356
A5 Transfers between funds - - - - -
A6 Cash funds last year end 37,952 32,478 - 70,430 41,073
Cash funds this year end 44,747 134,371 - 179,118 70,429
----- End of picture text -----

Section B Statement of assets and liabilities at the end of the per	Section B Statement of assets and liabilities at the end of the per	Section B Statement of assets and liabilities at the end of the per	Section B Statement of assets and liabilities at the end of the per
Categories Signed by one or two B5 Liabilities B3 Investment assets B4 Assets retained for the charity’s own use B2 Other monetary assets B1 Cash funds	Signature Details Unpaid invoice to NJC Secretarial Unpaid invoice to Luca Buccella Details Details (agree balances with receipts and payments account(s)) Details *Total cash funds* Details	Unrestricted Restricted to nearest £ to nearest £ 44,747 134,371 - - - - 44,747 134,371 OK OK Unrestricted funds Restricted funds to nearest £ to nearest £ - - - - - - - - - - - - Fund to which asset belongs Cost (optional) - - - - - Fund to which asset belongs Cost (optional) - - - - - - - - - Fund to which Amount due PTC Research 58 PTC Research 1,156 - - - Print Name	Endowment to nearest £ - - -
			-
			OK
			Endowment funds to nearest £ - - - - - - Current value (optional) - - - - - Current value (optional) - - - - - - - - - When due 13/10/22 30/11/22 Date of

INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES OF PATHFINDERS NEUROMUSCULAR ALLIANCE

I report to the trustees on my examination of the accounts of Pathfinders Neuromuscular Alliance (‘the charity’) for the year ended 5 April 2022.

Responsibilities and basis of report

As the charity’s trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities and Trustee Investment (Scotland) Act 2005 (the ‘2005 Act’), the Charities Accounts (Scotland) Regulations 2006 (as amended), and the Charities Act 2011 (‘the 2011 Act’). You are satisfied that your charity is not required by charity law to be audited and have chosen instead to have an independent examination.

I report in respect of my examination of the Trust’s accounts carried out under section 44 (1) (c) of the 2005 Act and section 145 of the 2011 Act. In carrying out my examination I have followed the requirements of Regulation 11 of the Charities Accounts (Scotland) Regulations 2006 (as amended) and all applicable Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.

Independent examiner’s statement

I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

accounting records were not kept as required by Section 44 (1) (a) of the 2005 Act and Regulation 4 of the Charities Accounts (Scotland) Regulations 2006 (as amended) and section 130 of the 2011 Act; or
the accounts do not accord with those records; and
the accounts do not comply with the accounting requirements of Regulation 8 of the Charities Accounts (Scotland) Regulations 2006 (as amended).

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.

Mr J P Foxwell FCCA FCIE independent-examiner.net

39 Enfield Road, Poole, BH15 3LJ

Date: 13 December 2022

Charity Name No (if any) Pathfinders Neuromuscular Alliance 1155884 Receipts and payments accounts For the period from Period start To Period end 6th April 2021 5th April 2022	CC16a