**Trustees’ annual report (including Directors’ report) for the period From: Period start date 01/01/2021 To: Period end date 31/12/2021 Charity name: Hypermobility Syndromes Association (working name: HMSA) Charity registration number:** 1186735 **Company number: n/a**
## **Objectives and activities**
||SORP reference||
|---|---|---|
|Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|We support all hypermobile people and the
professionals who work with them.
The object of the Hypermobility Syndromes
Association, as set out in our governing
document, is to preserve and protect good
health among, and relieve the needs of,
people affected by Hypermobility
Syndromes, in particular by:
a. Providing validation, education,
rehabilitation and positive self-management
advice for people with hypermobility related
disorders and their entire support network,
including their families, teachers, friends
and colleagues. Encouraging a culture of
support while raising awareness, knowledge
and self-determination.
b. Improving the quality of life, and enabling
effective self-management for affected
individuals through a variety of resources,
including (but not limited to): self-
management programs, support groups,
social media, publications, helpline and
support from our expert patient volunteers.
c. Working with and educating the relevant
medical, social and health professionals in
developing awareness and understanding of
the biopsychosocial impact of hypermobility
related disorders for individuals and their
entire support network.|
|||d. Supporting and encouraging individuals in
their pursuit of diagnosis and treatment, via
signposting to appropriate services where
necessary.
e. Providing an environment which enables
people affected by a hypermobility
syndrome to volunteer, furthering the
charity’s aims whilst developing their own
workplace skills and confidence.
f. Maintaining the Information Standard, as
was accredited by NHS England, so as to
ensure the high standard of all HMSA
publications in whichever format deemed
suitable.
g. Working with other organisations to
undertake and promote research into
hypermobility related disorders, the useful
results of which will be published for the
public benefit. To seek to be the patient
partner and to disseminate research,
surveys and investigations whilst
maintaining our high standard of
information.
h. Collaborating with other organisations on
policies, strategies and projects, which are
synergistic with the CIO’s own strategy and
values.|
|---|---|---|
|Summary of the main
activities in relation to those
purposes for the public
benefit, in particular, the
activities, projects or services
identified in the accounts.|Para 1.17 and
1.19|The HMSA’s main activities include:
• Provision of evidence-based
resources, information and support
to anyone affected by hypermobility
and the professionals and that
support them.
• Free support given via helpline, email
and social media feeds to anyone
that needs it.
• Running our membership scheme to
provide extra, tailored support for
the hypermobile community.
• Local groups providing additional
peer to peer support for members.
• Bi-annual production of journal for
members.
• Organising and leading regular
events for both professionals and
those affected byhypermobility.|
|||• Running thriving social media feeds
to raise awareness of hypermobility
and the HMSA and to provide timely
information and support. For
example, our Facebook page had a
reach of around 100,000 in the latter
months of 2021.
• Working closely with our group of
Medical Advisors.
• Delivering the HMSA Professional
Educational Model and wider
professional education.
• Contributing to and keeping abreast
of the latest research and supporting
multiple research projects - assisting
researchers in finding participants
and disseminating results.
• Liaising with, working in partnership
or alongside other relevant partners
such as ARMA, EDS UK or PoTS UK.|
|---|---|---|
|Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|The Hypermobility Syndromes Association’s
board takes seriously the Charity
Commission’s guidance on public benefit.
All our activities are relevant to improving
health outcomes, wellbeing, and support for
people with hypermobility in line with our
stated charitablepurposes stated above.|
## **Additional information (optional)** You may choose to include further statements where relevant about:
||SORP reference||
|---|---|---|
|Policy on grant making|Para 1.38|n/a|
|Policy on social investment
including program related
investment|Para 1.38|n/a|
|Contribution made by
volunteers|Para 1.38|Our team of around 40 volunteers make a
vital contribution to the work of the
Hypermobility Syndromes Association
(HMSA). We do a huge amount with very
limited resources thanks to our amazing
volunteers who cover a wide range of roles
from social media, to fundraising, to running
localgroupsproviding peer-led support,to|
editing our journal, to supporting and leading our work with professionals. Almost all our volunteers have personal experience of hypermobility and their lived experience and insight, combined with an ethos of practical self-management, enables the HMSA to provide validation, support, and practical advice that cannot come from theoretical understanding alone. “Volunteering with the HMSA has meant working with people where I am completely understood and accepted – where I don’t have to explain my limits or why I need to do something differently. Where I can be who I am, how I am… But the best part is that through the work of the charity I am providing that same sense of safety and belonging for the hypermobile community the charity supports.” We are also extremely lucky to have a voluntary group of Medical Advisors, led by Dr Philip Bull, who bring expertise, skills and knowledge across a range of specialist fields relevant to hypermobility ensuring that the information we provide is up to date, rigorously checked and comprehensive. The HMSA is run by 2 paid, part-time staff Other whose total hours do not equate to 1 fulltime role. All other work is carried out by volunteers.
## **Achievements and performance**
|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|The HMSA is here to support_everyone_with
symptomatic hypermobility – whatever the
cause – and however mildly or severely they
may be affected.
In a year where the effects of COVID-19
continued to be felt, especially by many in
the hypermobile community who were
especially vulnerable, the HMSA continued
to be responsive and adapt rapidly to
changing circumstances.
The HMSA maintained - and even expanded
- service provision while many other services
pulled back and the NHS was under extreme
pressure. For a charity staffed mainly by
volunteers, many with their own health
needs, this continuity of service, at a time
when people needed it most, was a major
achievement.
As a small charity led by people with lived
experience, we were able to be very agile
and quickly pivot our services to provide the
expert, specialist services our members, the
professionals who support them and the
wider hypermobile community needed.
•_“_You help me to understand things
I’ve been going through for 20
years...”
•“Thank you. That was the most
informative, helpful support session
I’ve ever attended.”
For example, weekly online relaxation
classes introduced during COVID-19
continued to support wellbeing and reduce
isolation as did the monthly online ‘ask the
Occupational Therapist’ sessions. The
#HypnOT (‘Living Well with Hypermobility) 5
week course was also a great success again
and was well attended with excellent
feedback.|
|---|---|---|
Feedback after ‘Ask the OT’ session: “I am always so impressed and grateful for the amount of useful information and tips that are in these sessions. It's so nice to have ideas for making day to day living that bit better.” Additionally, our local regional groups successfully continued their transition to online delivery providing much needed support, connection and information for our members with 7 groups regularly running with 2 more in the pipeline. Feedback to local group leaders: “I couldn't be more grateful for your emails. Your first was so kind and thoughtful, thank you. And to receive another with more considered responses and detail. I am deeply touched by your kindness and efforts. Thank you so much. I really appreciate all the time you have taken to help me. I am truly blown away!” “Would just like to say thank you for all you've done running the group over the last few months. You always seem to have a smile on your face. I have learnt some useful stuff and it is nice to realise we are not alone.” Our professional education team ran a successful well attended Masterclass for the professionals in September. Sessions were led by 5 guest speakers, all of whom, volunteered their time live to answer any questions from the audience in addition to their presentations. A range of topics were covered including - the link between Neurodiversity and Hypermobility; the latest diagnostic and management guidelines for PoTs and its relationship with dysautonomia; and the SPIDER – a multi system diagnostic tool. Our social media team continued to be very active providing information not only about hypermobility but also information on COViD-19, vaccines and shielding – as well as self-management through these difficult times. Over 100 individuals were directly supported with confidential 1:1 advice via Facebook, in addition to the high levels of
public engagement with our posts. For a small charity, our reach on social media (c.42k on Facebook, c. 11k on twitter and 3k on Instagram) continues to be impressive. Additional help was provided by our trained helpline team led by volunteers helping to support over 200 more people via email and phone. We worked jointly with EDS UK to coproduce an online toolkit for schools with EDS UK which was launched in Summer 2021. The schools hub will improve the support given to children with hypermobility in schools. The toolkit provides clear, practical information for schools on how best to enable and support hypermobile pupils. The HMSA supplied several sections for the toolkit and helped to guide the use of language and overall approach to ensure it was both accurate and inclusive. By the end of November 2021, the online toolkit had reached 11,187 unique visitors and usage levels continue to grow. Many of the key achievements in 2021 were around maintaining stability and ensuring that the HMSA was building the foundations for future growth and development. A key element of this work was the creation of a new HMSA website which was completed in December 2021 and officially launched at the start of January 2022. Website feedback: “I do love your site. I will continue to use it. You have the most information _[on hypermobility]_ I've been able to find. I really appreciate that.” The HMSA was also pleased to welcome four new trustees during the course of 2021 – Mark Austin, Nichola Gardner, Zoe Lomax and Gil Hilleard – who had previously provided pro bono organisational support and advice to the charity. The varied skills and very extensive experience that they jointly bring mean that the HMSA’s board will be even stronger and fully able to meet any challenges ahead while continuing to shape and helping to develop the HMSA’s future strategy.
The HMSA was sad to lose Executive Manager, Jane van Velsen, during 2021 but would like to thank her for all the fantastic work that she did and the invaluable changes and developments she instituted while she was in post. The Board was also like to thank Hannah Turner* (then Chair) for her tireless work and her amazing contribution covering Jane’s position on a voluntary basis while a replacement CEO was successfully recruited. The post was filled in the autumn of 2021 and the new CEO started in January 2022 and will be able to build on the excellent work achieved in 2021. (Note: *Hannah Turner is also known professionally, under her pen name, as Hannah Ensor.)
## **Financial review**
|**Financial review**|||
|---|---|---|
|Review of the charity’s
financial position at the end
of the period|Para 1.21|See financial information attached:
Income for period: £35,125
Expenditure for period: £34,752
Unrestricted funds at year end: £20, 630
Restricted funds at year end: £6217.
Total funds at year end: £26,847|
|Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|The HMSA's Reserves Policy takes in account
potential risks and liabilities. The HMSA aims
to hold a minimum of 3 months running
costs in reserves. In 2021 the charity aimed
to keep £5000 for essential expenditure and
emergency or closure costs, plus a £5000
buffer that can be used to cover temporary
income reduction or to provide initial funds
for setting up new projects.|
|Amount of reserves held|Para 1.22|£10,000|
|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|**n/a**|
## **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|The HMSA’s principal sources of income are
fundraising, membership and grant income.
We would like to thank everyone who
supported the HMSA in 2021, including the
Albert Hunt Trust and the National Lottery
CommunityFund. n/a|
|---|---|---|
|Investment policy and
objectives including any
social investment policy
adopted|Para 1.46|**n/a**|
|A description of the principal
risks facing the charity|Para 1.46|The trustees review a detailed and regularly
updated risk register at each quarterly
trustee meeting. The risk register outlines
key risks and ensures that any action needed
to ameliorate risks is taken quickly and on
the basis of full information.|
|Other|||
## **Structure, governance and management**
|Description of charity’s
trusts:||**n/a**|
|---|---|---|
|Type of governing document:
for example,trust deed,
memorandum and articles of
association etc|Para 1.25|Constitution|
|How is the charity
constituted?
for example limited company,
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|Elected by other trustees|
||||
## **Additional information (optional)**
## You may choose to include further statements where relevant about:
|Policies and procedures
adopted for the induction and
training of trustees|Para 1.51|References, and detailed checks are
provided before trustees start. The HMSA
has an induction procedure including
provision of all relevant documents and
policies and can offer additional support for
new trustees,as required.|
|---|---|---|
|||**n/a**|
The charity’s organisational Para 1.51 structure and any wider network with which the charity works **n/a** Para 1.51 Relationship with any related parties **n/a** Other
## **Reference and administrative details**
|Charity name|**The Hypermobility Syndromes Association **|
|---|---|
|Other name the charity uses|**HMSA**|
|Registered charity number|**CIO 19863**|
|Charity’s principal address|**49 Greek Street, London W1D 4EG**|
## **Names of the charity trustees who manage the charity**
|1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year**|**Name of person (or body) entitled**
**to appoint trustee(if any)**|
|---|---|---|---|---|
||Rachel King|Trustee|From December 2020||
||Hannah Turner|Chair|Until December 2021||
||Gil Hilleard|Trustee|June 2021||
||Nichola Gardner|Trustee|May2021||
||Zoe Lomax|Trustee|May2021||
||Mark Austin|Trustee (Acting
Chair from March
2022)|December 2021||
||Keith Diaper|Trustee|Until July2021||
||||||
||||||
||||||
||||||
||||||
||||||
||||||
||||||
||||||
||||||
||||||
||||||
||||||
– Corporate trustees names of the directors at the date the report was approved
**Director name n/a**
Name of trustees holding title to property belonging to the charity
|**Trustee name**|**Dates acted if not for wholeyear**|
|---|---|
|**n/a**||
|||
|||
|||
|||
|||
## **Funds held as custodian trustees on behalf of others**
|Description of the assets
held in this capacity|n/a|
|---|---|
|Name and objects of the
charity on whose behalf the
assets are held and how this
falls within the custodian
charity’s objects|n/a|
|Details of arrangements for
safe custody and
segregation of such assets
fromthe charity’s ownassets|n/a|
## **Additional information (optional)**
## **Names and addresses of advisers (optional information)**
|**Type of**
**adviser **
**Name**
**Address**|**Type of**
**adviser **
**Name**
**Address**|**Type of**
**adviser **
**Name**
**Address**|
|---|---|---|
||||
||||
||||
||||
|**Name of chief executive or names of senior staff members (optional information)**|||
||||
## **Exemptions from disclosure**
Reason for non-disclosure of key personnel details
## **Other optional information**
## **Declarations**
**The company has taken advantage of the small companies’ exemption in preparing the report above.**
**The trustees declare that they have approved the trustees’ report (including directors’ report) above.**
**Signed on behalf of the charity’s trustees/directors**
**Signature(s) Full name(s)** Mark Haddon Austin **Position (for example** Chair **Secretary, Chair, etc)**
**Date** 16/8/22
|**Hypermobility Syndromes Association**|**Hypermobility Syndromes Association**||**1186735**||
|---|---|---|---|---|
|**Receipts andpayments accounts**||||**CC16a**|
|**For the period**
**from**|01/01/2021|**To**|31/12/2021||
## **Section A Receipts and payments**
||**Unrestricted**
**funds**||**Restricted**
**funds**||||**Endowment**
**funds**|**Endowment**
**funds**|||**Total funds**||**Last year**||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
||**to the nearest**
**£**||**to the nearest**|**£**|||**to the nearest**|**£**|||**to the nearest £**||**to the nearest**|**£**|
|**A1 Receipts**|||||||||||||||
|Donations and Legacies|**11,686**|||**-**||||**-**|||**11,686**||**4,913**||
|Charitable Activities|**19,712**|||**-**||||**-**|||**19,712**||**5,322**||
|Trading|**2,911**|||**-**||||**-**|||**2,911**||**2,628**||
|Other Income|**816**|||**-**||||**-**|||**816**||**34,619**||
||**-**|||**-**||||**-**|||**-**|||**-**|
||**-**|||**-**||||**-**|||**-**|||**-**|
||**-**|||**-**||||**-**|||**-**|||**-**|
||**-**|||**-**||||**-**|||**-**|||**-**|
|**_Sub total_**_(Gross income for_
_AR)_|**35,125**|||**-**||||**-**|||**35,125**||**47,482**||
||||||||||||||||
|**A2 Asset and investment sales,**|||||||||||||||
|**(see table).**|||||||||||||||
||**-**||||**-**||||**-**||**-**||||
||**-**||||**-**||||**-**||**-**|||**-**|
|**A1 Receipts**|**Unrestricted**
**funds**
**to the nearest**
**£**
**11,686**
**19,712**
**2,911**
**816**
**-**
**-**
**-**
**-**
**35,125**|**Restricted**
**funds**
**to the nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**Endowment**
**funds**
**to the nearest £**|**Total funds**
**to the nearest £**
**11,686**
**19,712**
**2,911**
**816**
**-**
**-**
**-**
**-**
**35,125**|**Total funds**
**to the nearest £**
**11,686**
**19,712**
**2,911**
**816**
**-**
**-**
**-**
**-**
**35,125**|**Last year**
**to the nearest £**|
|---|---|---|---|---|---|---|
|Donations and Legacies|**11,686**|**-**|**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**11,686**||**4,913**|
|Charitable Activities|**19,712**|**-**||**19,712**||**5,322**|
|Trading|**2,911**|**-**||**2,911**||**2,628**|
|Other Income|**816**|**-**||**816**||**34,619**|
||**-**|**-**||**-**||**-**|
||**-**|**-**||**-**||**-**|
||**-**|**-**||**-**||**-**|
||**-**|**-**||**-**||**-**|
|**_Sub total_**_(Gross income for_
_AR)_|
**35,125**|**-**||**35,125**||**47,482**|
|**A2 Asset and investment sales,**
**(see table).**|**-**
**-**|**-**
**-**||**-**
**-**|||
||**-**|**-**|**-**
**-**|**-**|||
||**-**|**-**||**-**||**-**|
|**_Sub total_**|**-**|**-**|**-**|**-**||**-**|
|**_Total receipts_**
**A3 Payments**|||||||
||||**-**|**35,125**||**47,482**|
||||||||
|Charitable Activities|**29,833**||**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**32,976**||**21,008**|
|Governance Costs|**1,776**|||**1,776**||**-**|
||**-**|||**-**||**-**|
||**-**|||**-**||**-**|
||**-**|||**-**||**-**|
||**-**|||**-**||**-**|
||**-**|||**-**||**-**|
||**-**|||**-**||**-**|
||**-**|||**-**||**-**|
|**_Sub total_ **|**31,609**|||**34,752**||**21,008**|
||||||||
|**A4 Asset and investment**
**purchases, (see table)**|||||||
||**-**||**-**
**-**
**-**|**-**|||
||**-**|||**-**|||
|**_Sub total_ **|**-**|||**-**||**-**|
|**_Total payments_**
**_Net of receipts/(payments)_**
**A5 Transfers between funds**
**A6 Cash funds last year end**
**_Cash funds this year end_**|||||||
||||**-**|**34,752**||**21,008**|
||||||||
||**3,516**||**-**|
**373**||**26,474**|
||**1,166**||**-**
**-**|**-**||**-**|
||**15,948**|||**26,474**||**-**|
||**20,630**||**-**|**26,847**||**26,474**|
CCXX R1 accounts (SS)
20/12/2022
1
## **Section B Statement of assets and liabilities at the end of the period**
|**Categories**
**B5 Liabilities**
**B3 Investment assets**
**B2 Other monetary assets**
**B4 Assets retained for the**
**charity’s own use**
**B1 Cash funds**|**Details**
**Details**
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
Bank
Stripe
**Details**
**Details**
**Details**|**Unrestricted**
**funds**
**to nearest £**
**20,313**
**317**
**-**
**20,630**
OK
**Unrestricted**
**funds**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**asset belongs**
**Fund to which**
**asset belongs**
**Fund to which**
**liability relates**|**Restricted**
**funds**
**to nearest £**
**6,217**
**-**
**-**
**6,217**
OK
**Restricted**
**funds**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Amount due**
**(optional)**
**-**
**-**
**-**
**-**
**-**|**Endowment**
**funds**
**to nearest £**|
|---|---|---|---|---|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||OK|
|||||**Endowment**
**funds**
**to nearest £**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**Current value**
**(optional)**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**Current value**
**(optional)**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**-**|
|||||**When due**
**(optional)**|
||||**-**||
||||**-**||
||||**-**||
||||**-**||
||||**-**||
Signed by one or two trustees on behalf of all the trustees
Signature
Print Name
Date of approval
CCXX R2 accounts (SS)
20/12/2022
2
## **Independent examiner's report on the accounts**
**Section A**
**Independent Examiner’s Report**
## **Report to the trustees/ members of**
## Hypermobility Syndromes Association
> **On accounts for the year** 31 December 2021 **Charity no** CIO19863 **ended (if any) Set out on pages** 1-2
I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended **DD / MM / YYYY** 31 December 2021.
**Responsibilities and** As the charity trustees of the Trust, you are responsible for the preparation **basis of report** of the accounts in accordance with the requirements of the Charities Act 2011 (“the Act”).
I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.
**Independent** I have completed my examination. I confirm that no material matters have **examiner's statement** come to my attention (other than that disclosed below *) in connection with the examination which gives me cause to believe that in, any material respect:
- accounting records were not kept in accordance with section 130 of the Act or
- the accounts do not accord with the accounting records
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable a proper understanding of the accounts to be reached.
* _Please delete the words in the brackets if they do not apply._
**Signed: Date:** 19th August 2022 **Name:** Virginia Santer **Relevant professional** FCCA **qualification(s) or body (if any):**
**Address:** Sovereign House, 22 Shelley Road, Worthing, West Sussex, BN11 1TU
**October 2018**
1
**IER**
**Section B Disclosure**
Only complete if the examiner needs to highlight matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners).
**Give here brief details of any items that the examiner wishes to disclose** .
**October 2018**
2
**IER**