## 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