2023-04-05-accounts

Trustees’ Annual Report for the period

From 06/04/2022 To

05/04/2023

Charity name: Pathfinders Neuromuscular Alliance

Charity registration number:1155884

Objectives and Activities

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SORP
reference
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Summary of the purposes of the charity as set out in its governing document	Para 1.17	Our charitable objectives are: 1. The promotion of social inclusion of people with neuromuscular conditions who are socially excluded from society, or parts of society as a result of having Muscular Dystrophy and related neuromuscular conditions by: 1. Providing a network of groups that encourage and enables them to participate more effectively with the wider community; 2. 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; 3. Raising public awareness of the issues affecting them in all areas relating to having a neuromuscular condition; 4. Providing support to those between the age of 18 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. The aims for Pathfinders Neuromuscular Alliance are as follows: To provide a voice for adults living with Muscular Dystrophy and related neuromuscular conditions. (Objects 1.1 & 1.3) We have engaged on matters of policy, including those around the COVID-19 pandemic, housing, and access to treatments for Spinal Muscular Atrophy To provide a forum for adults living with Muscular Dystrophy and related neuromuscular conditions to share experiences, ideas and opinions in complete confidence. (Objects 1.2 & 1.3) We have continued to manage peer facilitated support through our online forum, as well as expanding our social events, kicking off our youth development project,_Uplift,_starting a peer facilitate

space for people using direct payments to employ a PA or carer, and delivering sessions to people with neuromuscular conditions in schools and alongside other organisations. To provide information, advice and peer support to adults living with Muscular Dystrophy and related neuromuscular conditions. (Objects 1.2 & 1.3) We have created and updated website resources, 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. We have created new peer support spaces to reach a wider number of people. To identify, promote, and develop best practice, innovative treatments and technologies for adults living with Muscular Dystrophy and related neuromuscular conditions. (Object 1.2) We have carried out research into the process of transitioning to adulthood for people with DMD and are currently disseminating those findings and looking to utilise them for policy influence. We have also engaged with research projects looking to support people with muscle-weakening conditions with tools for upper limb function. We have promoted and supported a range of research projects including: –scoping review of social care and support priorities for young people with neuromuscular conditions, University of York --chaplaincy services and spiritual care of children, young people and parents facing end of life,University of York –attitudes towards treatment of DMD, Newcastle University –sexual functioning and fertility in DMD,Newcastle University – assistive Technology, University College London – supporting genders project, University of Northumbria – Bone health for patients with DMD, University of Glasgow – supporting the functioning of Pfizer patient boards To campaign and influence treatments for adults living with Muscular Dystrophy and related neuromuscular conditions within health and local authorities, government, relevant professionals, disability organisations and charities. (Objects 1.1 & 1.2) We have been involved with a range of campaigns, with a particular focus on housing, social care, and personalised care. We hope to boost our campaign work further next year. To work with health and local authorities, government, disability organisations and charities in improving care, support and services for adults living with Muscular Dystrophy and related neuromuscular conditions. (Objects 1.1, 1.2 & 1.3) As well as our direct support and advocacy work and our housing research and campaigns, we have participated in the Campaign for Personalised Care, our own Crafting for Change campaign, and developed training for people with muscle-weakening conditions in employing their own carers or PAs. To increase awareness of adults living with Muscular Dystrophy and related neuromuscular conditions. (Object 1.1)

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Through our campaign work, and wider events we have increased
awareness of adults living with neuromuscular conditions. With
the Keyfort Group naming us their charity of the year and an
expansion in community fundraising work and media work next
year, we hope to see that expand.
Summary of Para 1.17 PTC Skills Online
and 1.19
the main We completed the Online Skills Project, through which we worked
activities in with a cohort of young people with DMD, supporting them to
relation to develop skills in online speaking, and organising and running
those informational sessions for other young people with DMD.
purposes for
the public PTC Research
benefit, in The Pathfinders Research Team reached the final stages of data
particular, the collection, analysis and dissemination planning for the transition
activities, to adulthood with the DMD project. Peer researchers had the
projects or opportunity to enhance their research skills while contributing to
services the applied and theoretical understanding of transition issues for
identified in young adults.
the accounts.
Uplift
Our Youth Development Project got properly underway, with a
wide range of events run for young people aged 18-30 with
muscle-weakening conditions, including social, informational, and
community events online and offline. We built relationships with
other partners, and strengthened our connections with members
in the target age group, working towards our first residential in
2023-24.
Skills for Care Employer Training
We designed a training course for people with muscle-weakening
conditions (and people with high support needs more broadly) in
employing and managing their own PA teams. This has given
people far more confidence in their ability to live independently
and manage their care. We are delivering this going forward into
2023-24.
Skills for Care PA Training
We completed a training project for the PAs and carers of people
with muscle-weakening conditions. This offers them training in the
support needs of people with this family of conditions, and has
improved job performance, recruitment, and retention as part of
this. This remains on our website going forward.
Core Work
Through our core capacity, we supported the above projects,
applied for a range of grants successfully, including the Skills for
Care employer training, a further year of PTC Research, and a
Tudor Trust development grant, and have other applications
outstanding. We also moved to a new project management
system, CRM, membership process, and transformed our social
media engagement.
Statement Para 1.18 The trustees have observed the work carried out by Pathfinders
confirming closely and agree that it meets the public benefit test.
whether the
trustees have
had regard to
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the guidance issued by the Charity Commission on public benefit

Additional information (optional) You may choose to include further statements where relevant about:

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SORP
reference
We would not be able to carry out the work we do
Para 1.38 without the endless commitment of our volunteers,
Contribution made by especially the trustees, and those members who share
volunteers their experiences and knowledge generously within our
facebook group.
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Achievements and Performance

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SORP
reference
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	SORP reference
Summary of the main achievements of the charity, identifying the difference the charity’s work has made to the circumstances of its beneficiaries and any wider benefits to society as a whole.	Para 1.20	Our main achievements have been as follows: Completing the first year of the Uplift project, which reached a total of approximately 60 young people with muscle-weakening conditions, giving them skills which will both benefit their own expertise in self-advocacy, and also in building campaigns with wider social benefit. Completing delivery of our PA training programme, which is now hosted on our website and available for all PAs to take. Securing funding for, and beginning, our sibling training designed for people employing PAs, to give them the skills they need to recruit, manage, and support their care team. Completing the second year of our PTC-funded research on transition to adulthood for people with DMD, and securing the funding for the third year of this research project, which will have national benefit for people with neuromuscular conditions transitioning to adulthood. Securing funding to upgrade our web presence, advice, and guidance, to further professionalise as an organisation. We wish to register particular thanks to several people, including co-founder Jon Hastie, who moved on to a new role in July 2022 and to remember with gratitude a number of people who passed away during this year, including co-founder Mark Chapman, current trustee Anthony Price, former trustee and Chair of Trustees

Lucy Watts, former trustee Alan Pockley, and members including Harry Thompson and Philip Carroll.

Additional information (optional) You may choose to include further statements where relevant about:

Achievements against objectives set
	Para 1.41	The objectives we set in our strategic plan were: Internal work: IDEAS Improving our governance We intended to carry out a full policy review, drafting outstanding policies and sending them to trustees for approval, as well as updating our risk register and scheduling policy and risk register reviews. We have drafted the majority, and only have a few outstanding. We have updated our risk register and scheduled reviews. We also intended to strengthen our board of trustees, and have continued to promote the role to members, adding more information to the website about the role, mapping skills informally and have recruited a trustee and an advisor who do not have neuromuscular conditions themselves. Demonstrating our impact We have developed ways of mapping impact in our projects, including collection of formal and informal feedback, which has informed our website, reports, and funding bids. We will put case studies on our website next year alongside our web development. We are carrying out our annual survey, but have decided not to join any accreditation schemes due to our size and the potential workshop. Expanding our membership We have improved and clarified our membership application process. We have commissioned design for our information packs and will finish those in the upcoming year, along with welcome information. As we have carried out more in-person events this has

improved our outreach, and we are almost ready to
launch our new member sign-up process.
Aligning our branding
We have reviewed and improved our social media
presence, commissioned graphic design through a
different provider (Katy Etherington), and have secured
funding to rewrite all our website information in a
consistent tone and style in the upcoming year.
Securing financial sustainability
We have improved community links and therefore
fundraising, including raising £4517.76 through
donations, including an excellent event by Hayleigh
Barclay, a number of fundraising platforms such as
Amazon Smile and EasyFundraising, and funds raised at
member funerals.
We have benefited from a corporate partnership with
bPerfect Cosmetics and Tess Daly, which raised £5630,
and has taught us a lot about managing corporate
partnerships and relationships
We have brought in successful grants including from
PTC to continue our research, Skills for Care to run
employer training, the Tudor Trust for development, and
through a Wellcome funded project on users of long-
term ventilation, as well as a commission from Action
Duchenne.
External work: SCORE
Setting up campaigns and events
We intended to run the following events:
Informational:
- Accessible travel
- Managing your care
- Living independently
- Managing emergencies
-
Social
- Online quiz
- Drop-in space
- Themed event
Campaigns
- Care and support, considering workforce
challenges
Supporting members with their campaigns, where we
have supported Sarah Rose’s_Crafting for Change_, and
the work of members including Fleur Perry’s work on
housing and home ventilation, and Sanjeev Mann and
Jamie Hale’s work on access to arts venues in Scotland
and England respectively.
_Crafting for Change_encouraged a range of members to
craft and create items for sale - which was an excellent
example of community fundraising. Similarly, Hayleigh
Barclay organised an incredibly successful local

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fundraising event, which again we felt privileged to be
the recipients of support from.
Continuing our projects
We have continued our Youth Development Project,
Uplift, our research on Transition to Adulthood with
DMD, our Content Creators Academy work producing
information and advice resources (which we will
complete in 2023-24), and our PA Training Programme.
Offering information, advice, and support
We have explored funding for an advocacy service and
whilst grants were unsuccessful we anticipate funding
this for a short period from our reserves to prove
demand, making it easier to seek further funding.
We have refreshed some of our information and advice
resources, thanks to the Content Creators project, and
have recruited someone to transform old resources
using our new templates in 2023-24.
We have been involved in small-scale resource creation,
but not through funding partnerships.
Raising awareness
We have delivered two What It’s Like articles and intend
to continue using the same format. We have also
delivered three social media takeovers demonstrating
the reality of living with a muscle-weakening condition.
We have pitched original content to the media and
worked on outreach to press and media contacts. This
includes Jamie undertaking media spokesperson
training, which will show benefits in the upcoming years.
Engaging members and organisations
We have not encouraged significant volunteering due to
limited resources to support volunteers. We have had
regular events through the Uplift project and are looking
at other ways of holding regular events in the next year.
We hoped to organise a neuromuscular round-table but
were unable to do so due to capacity.
Overall we have achieved the vast majority of our
objectives. The majority of those we could not achieve,
we have postponed for the next year, due to staff
capacity.
Our objective was to apply for two grants of £50,000-
£100,00, two grants of £20,000-£50,000 and four grants
Performance of of £0-£20,000.
fundraising activities Para 1.41
against objectives set We received funding for two projects of £0-£20,000,
including a series of webinars for Action Duchenne, and
a Tudor Trust Development Grant. We are awaiting the
outcome of a further two grants of this scale.
We made six grant applications for £20,000-£50,000
(against a target of two), of which three were successful
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- the Skills for Care PA Employer Training, an additional
year of the PTC-funded transition to adulthood with
DMD, and support on a Wellcome funded project called
Cripping Breath were successful. Two were
unsuccessful, and one is outstanding.
We focused on smaller grant applications and on grants
that fitted more closely with member and organisational
needs, and therefore have not applied for the two grants
of £50,000-£100,000. We are currently writing
applications for projects at this scale and have
developed a way of finding appropriate funding and
tracking our funding applications more smoothly, which
will also speed up writing and submitting them.
We did not have investment objectives set.
Investment Para 1.41
performance against
objectives
Other
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Financial Review

Review of the charity’s financial position at the end of the period	Para 1.21	Pathfinders Neuromuscular Alliance is in a strong position, with grants ongoing throughout the next financial year for all job roles, an increase in fundraising, and applications open with a range of funders.
Statement explaining the policy for holding reserves stating why they are held	Para 1.22	We currently hold reserves in excess of policy and are in the process of creating a job role in advocacy and engagement, which will spend reserves whilst also demonstrating the need for this to receive funding in future. We will also carry out a staff pay review against inflation and cost of living.
Amount of reserves held	Para 1.22
Reasons for holding zero reserves	Para 1.22	N/A
Details of fund materially in deficit	Para 1.24	N/A
Explanation of any uncertainties about the charity continuing as a going concern	Para 1.23	None

Additional information (optional) You may choose to include further statements where relevant about:

The charity’s principal sources of funds (including any fundraising)	Para 1.47	Our principle sources of funds are: ● National Lottery Grant for our Youth Development Project ● Funds for our Research Officer role from PTC Therapeutics ● Funds for the employer and the PA training through Skills for Care ● Core costs grant from the Tudor Trust ● Development grant from the Tudor Trust ● Partnerships and community fundraising
Investment policy and objectives including any social investment	Para 1.46	We do not have an investment policy.

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policy
adopted
The principal risks facing the charity are:
● Death or serious illness of a trustee or staff member, with
A Para 1.46 especial reference to our co-Chair of Trustees, Sarah
description Rose, or our CEO, Jamie Hale due to them being the only
of the signatories on a bank mandate requiring two signatures,
principal which we are managing by updating the bank mandate
risks facing and ensuring we have robust leave policies in date
the charity ● Withdrawal of funding by a major funder such as the
National Lottery or PTC Therapeutics, where we ensure
that we are up to date with all reporting and maintain open
communications with funders if we have concerns
● Loss of staff members, where significant project
knowledge is held by individuals, which we are managing
by transferring all project management to software where
deadlines and information can be held and accessed
communally
● A failure to secure core funding to replace the £30,000 p/a
funded by Tudor Trust from FY 2024-25 onwards, where
we are in the process of exploring alternative funders.
Other
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Structure, Governance and Management

Description of charity’s trusts:		N/A
Type of governing document (trust deed, royal charter)	Para 1.25	Constitution
How is the charity constituted? (e.g unincorporated association, CIO)	Para 1.25	CIO
Trustee selection methods including details of any constitutional provisions e.g. election to post or name of any person or body entitled to appoint one or more trustees	Para 1.25	Trustees are advertised for publicly, and can be appointed to the board by a majority vote of existing trustees. This has been invaluable given the turnover of trustees we have experienced.

Additional information (optional) You may choose to include further statements where relevant about:

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We have an onboarding process for new
trustees to ensure that they understand the
Policies and procedures role and significance of being a trustee, and
adopted for the induction and Para 1.51 training on the platforms and systems we
training of trustees use.
We are overseen by a trustee board
comprising two Co-Chairs of Trustees, Sarah
The charity’s organisational Rose and Vicky Mozley.
structure and any wider Para 1.51
network with which the Since Jon Hastie’s departure, Pathfinders
charity works has been run by a sole CEO, Jamie Hale,
with Michaela Hollywood as a Deputy CEO.
We currently share a storage locker with
CRIPtic Arts, also managed by Jamie Hale,
Relationship with any related Para 1.51 because this enabled us to access a storage
parties locker at lower cost than we otherwise would
have been able to.
Other
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Reference and Administrative details

Charity name	Pathfinders Neuromuscular Alliance
Other name the charity uses	Formerly known as DMD Pathfinders
Registered charity number	1155884

Charity’s principal address	℅ Sarah Rose 103 London Road Hailsham BN27 3AH

Names of the charity trustees who manage the charity

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Nam
e of
perso
n (or
body)
Dates acted if not for whole entitl
Trustee name Office (if any)
year ed to
appoi
nt
truste
e (if
any)
1 Sarah Rose Co-Chair of Trustees Whole year
2 Vicky Mozley Co-Chair of Trustees Whole year
3 Hayleigh Barclay SMA Rep Whole year
4 Sanjeev Mann DMD Rep From 09/08/2022-Present
Karen Hoe From 17/08/2023-
5
Present
Anthony Price Until his death in Feb
6
2023
7
8
9
10
11
12
13
14
15
16
17
18
19
20
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– Corporate trustees names of the directors at the date the report was approved

Director name

Name of trustees holding title to property belonging to the charity

Trustee name Dates acted if not for whole year

Funds held as custodian trustees on behalf of others

Description of the assets None held in this capacity Name and objects of the charity on whose behalf the assets are held and how this falls within the custodian charity’s objects Details of arrangements for safe custody and segregation of such assets from the charity’s own assets

Additional information (optional)

Names and addresses of advisers (Optional information)

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Type of Name Address
adviser
Informal Andrew Tunks
Name of chief executive or names of senior staff members (Optional information)
Matthew James Robinson-Hale - CEO; Michaela Hollywood - Deputy CEO
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Exemptions from disclosure

Reason for non-disclosure of key personnel details

Other optional information

Declarations

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Signature
Full name Sarah Rose Vicky Mozley
Position Co-Chair of Trustees Co-Chair of Trustees
Date 29/08/2023 30/08/2023
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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 2023.

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:

1. 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

2. the accounts do not accord with those records; and

3. 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: 15 September 2023

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Pathfinders Neuromuscular Alliance 1155884
Receipts and payments accounts CC16a
For the period 06/04/2022 05/04/2023
To
from
Section A Receipts and payments
Unrestricted Restricted Endowment
Total funds Last year
funds funds funds
to the nearest £ to the nearest £ to the nearest £ to the nearest £ to the nearest £
A1 Receipts
Consultancy 6172 - 6,172 -
Fundraising (donations) 10147.76 - 10,148 5,463
Fundraising (events) 76 - 76 -
Grants 30180 130,655.13 - 160,835 233,401
Interest 229.86 - 230
Reimbursements 2276.55 360 - 2,637 5,199
- -
Sub total (Gross income for 49,082 131,015 - 180,097 244,063
AR)
A2 Asset and investment sales,
(see table).
- - - -
- - - - -
Sub total [ - ] - - - -
Total receipts 49,082 131,015 - 180,097 244,063
A3 Payments
Bank interest and charges 78 - 78 114
Employment costs 25178.18 91,549.17 - 116,727 109,391
Insurance, governance and digital 3597.4 2312.54 - 5,910 6,123
Office costs, equipment and stationary 2019.33 3938.61 - 5,958 7,799
Payment and transaction costs - - 2
Project and event costs 415.56 39589.12 - 40,005 11,735
Promotional activity 2140.55 - 2,141 210
Volunteer and staff expenses 366.31 631.76 - 998 -
- - - - -
Sub total 31,655 140,162 - 171,817 135,374
A4 Asset and investment
purchases, (see table)
- - - -
- - - -
Sub total - - - - -
Total payments 31,655 140,162 - 171,817 135,374
Net of receipts/(payments) 17,427 - 9,147 - 8,281 108,689
A5 Transfers between funds - - - - -
A6 Cash funds last year end 44,747 134,371 - 179,118 70,429
Cash funds this year end 62,174 125,224 - 187,399 179,118
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CCXX R1 accounts (SS)

15/09/2023

1

Section B Statement of assets and liabilities at	Section B Statement of assets and liabilities at	the end of the period
Categories Signed by one or two trustees on behalf of all the trustees B4 Assets retained for the charity’s own use B2 Other monetary assets B3 Investment assets B5 Liabilities B1 Cash funds	Details Details Accounts Payable Signature Restricted funds Details Details Details Total cash funds (agree balances with receipts and payments account(s)) Unrestricted funds	Unrestricted funds Restricted funds to nearest £ to nearest £ 62,174 125,224 - - - 62,174 125,224 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 liability relates Amount due (optional) Restricted project costs 1,000 - SARAH ROSE Vicky Mozley Print Name	Endowment funds to nearest £ - - -
			-
			OK
			Endowment funds to nearest £ - - - Current value (optional) - - - Current value (optional) - - - When due (optional) 30 April 2023 Date of approval 29/08/2023 30/08/2023

CCXX R2 accounts (SS)

15/09/2023

2