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. |
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| 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. |
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| 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) |
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| - | ||||
| - | ||||
| - | ||||
| - | ||||
| - | ||||
| Current value (optional) |
||||
| - | ||||
| - | ||||
| - | ||||
| - | ||||
| - | ||||
| - | ||||
| - | ||||
| - | ||||
| - | ||||
| When due (optional) |
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| - | ||||
| - | ||||
| - | ||||
| - | ||||
| - |
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