Trustees’ annual report (including Directors’ report) for the period
From: Period start date 01/01/2022 To: Period end date 31/12/2022 Charity name: Hypermobility Syndromes Association (working name: HMSA) Charity registration number: 1186735
Company number: n/a
Objectives and activities
| SORP reference | ||
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| 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 strategyand 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 by hypermobility. • Running thriving social media feeds to raise awareness of hypermobility and the HMSA and to provide timely information and support. • 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 charitable purposes stated above. |
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| Additional information (optional) You may choose to include further statements where relevant about: |
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| 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 local groups providing 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. “I volunteer because I want to make a difference. If I can use my experience to help one person to feel supported and that they are not alone, then it is all worth it!” “Volunteering for the HMSA has meant that I can help others who have had similar experiences AND help people to actually manage their conditions like I have now learnt to. It’s so lovely to pop into any of the local groups and meet people all over the country and hear their stories and share support hints and tips.” 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. |
| Other | The HMSA is run by 2 paid, part-time staff whose total hours do not equate to 1 full-time role. All other work is carried out byvolunteers. |
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. We promote a holistic, solution-focussed approach to living well, providing self-management tools and support including: • Patient Support Groups • Education Programmes • Information and Advice for hypermobile people • Evidence-based information and advice for healthcare professionals Our Mission:To improve the support and access to treatment for anyone affected by hypermobility so they can live well. Our Values:Empowering, inclusive, collaborative, community-led, trustworthy. “The Hypermobility Syndromes Association … works so hard to support individuals and families struggling to cope with the various related syndromes that can be profoundly life-impacting but are still not widely understood.” (member) In a year where the long-term effects of COVID-19 still continued to be felt, especially by many in the hypermobile community who were especially vulnerable, we continued to provide responsive community-led support. While the NHS was under extreme pressure, with waiting lists growing, we helped to reduce the burden on statutory services by delivering support when it was not available elsewhere. Our medical advisors have been at the forefront of research in this area and have conducted research into the links between hypermobility and Long Covid – for publication in 2023. Our lead Medical Advisor also led an extremely useful session on Long Covid and hypermobility and other related conditions with tips and advice for treatment and management of symptoms. As a small charity led by people with lived experience, we are 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 communityneed. |
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In April 2022, we initiated a new series of monthly patient events on a wide range of topics from nutrition to exercise to help people with hypermobility selfmanage their condition better, so they are able to live well. Session content was shaped by feedback from members and volunteers. This series of events has been extremely well attended and received with over 330 people attending live events – and many more watching them on playback. “Just a little message to say how reassuring it is to be in a room with such well-informed, understanding and compassionate hosts. So much gratitude for you and all HMSA does, thank you.” (Post event feedback) For a charity staffed mainly by volunteers, many with their own health needs, this level of service provision, at a time when people needed it most, was a major achievement. “ You guys have always been my favourite source of information in the last 24 years of being diagnosed. Your [message board] page saved my life .” (Feedback about our online support.) The ‘Living Well with Hypermobility 5 week course for members at the start of the year was also a great success again and was extremely well attended with excellent feedback. The sessions included: Anxiety and mental health; Pain management; Sleep management; Weight management and an open Q&A session. We also run a helpline and deliver online support. • “So much of a relief to speak to someone who has it and knows how I feel. So helpful, answers lots of questions that I had.” (Helpline feedback) • “I wanted you to know how empowered I feel talking to you. You’ve understood completely.” (Helpline feedback) As well as offering support via a wide range of sessions and events including weekly online relaxation classes to support wellbeing, we also run monthly online ‘ask the Occupational Therapist’ sessions. Feedback after ‘Ask the OT’ session: “ Thank you that was the most informative, helpful support session I've ever attended! All the answers were multi-faceted, and
I learned something from each one, not just the .” response to my question Additionally, our local regional groups successfully continued their transition to hybrid delivery providing much needed support, connection and information for our members with 7 groups regularly running with 2 new groups starting soon. Feedback: “ I find all of the information and resources that you provide useful. It also helps to remind me that no matter how hard living with hypermobility can be – I am not going through it alone.” Our social media team continued to be very active providing information not only about hypermobility but also a wide range of related conditions. Over 150 individuals were directly supported with confidential 1:1 advice via Facebook, in addition to the very 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 300 more people via email, online and phone. During 2022, we continued to work closely in partnership with relevant charities in the field. Together we worked hard behind the scenes to ensure that key hypermobility services remain open and that more healthcare professionals are better informed about hypermobility. This important work is necessary so that patients can access earlier diagnosis as well as better support in their local area in the future. Many of the key achievements in 2022 were around maintaining stability and ensuring that the HMSA was building the foundations for future growth and development. The board and CEO reviewed the charity’s strategy and future plans. The key priority for the short-term remains focussing on strengthening and stabilising the organisation and raising vital funds so that the charity can extend and further develop its work. Key changes: The HMSA was delighted to welcome a new trustee during the course of 2022 – Zoe Walker. Zoe brings experience of working in both the civil service and the charitable sector. Zoe was diagnosed with Joint Hypermobility Syndrome in her mid-20s. Having a diagnosis helped to explain the chronic pain and fatigue she had over the years. Our helpline was
incredibly helpful when she needed someone to speak to who would understand. Zoe told us: “ The HMSA was the first charity I came across that provided vital information .” Mark Austin, an existing trustee, took over as Chair with the unanimous support of the board. Mark has a track record of delivering commercial success for a range of financial and payment related companies. His expertise includes business development, marketing and product management. Mark’s daughter lives with hypermobility. We are lucky to have a strong trustee board and the varied skills and very extensive experience that they jointly bring means that the charity is fully able to meet any challenges ahead while continuing to shape and develop the HMSA’s future strategy. The HMSA was pleased to appoint a new CEO in 2021. Lisa Bone brings experience from both the commercial and charitable sector and started in January 2022. Lisa has been able to build on the excellent work achieved in 2021 and is actively working on the future growth and reach of the charity.
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: £29,228 Expenditure for period: £39,541 Unrestricted funds at year end: £13,892 Restricted funds at year end: £2,642 Total funds atyear end: £16,534 |
| Statement explaining the policy for holding reserves stating why they are held |
Para 1.22 | The charity aims to keep 3-6 months in reserves. In 2022 the charity aimed to keep £6000 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 | £11,000 |
| 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, sponsorship and grant income. We would like to thank everyone who supported the HMSA in 2022. |
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| 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 regularly at trustee meetings. 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 | |
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| 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: |
Additional information (optional) You may choose to include further statements where relevant about: |
Additional information (optional) You may choose to include further statements where relevant about: |
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| 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. |
| The charity’s organisational structure and any wider |
Para 1.51 | n/a |
| network with which the charity works |
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| Relationship with any related parties |
Para 1.51 | n/a |
| Other | n/a | |
| 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 |
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| 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 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 - present |
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| Gil Hilleard | Trustee | From June 2021 - present |
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| Nichola Gardner | Trustee | From May2021 -present | ||
| Zoe Lomax | Trustee | From May2021 -present | ||
| Mark Austin | Trustee (Chair from November 2022) |
From December 2021 - present |
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| Zoe Walker | Trustee | From March 2022 - present |
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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 |
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| 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)
| ional information (optional) Names and addresses of advisers (optional information) |
ional information (optional) Names and addresses of advisers (optional information) |
ional information (optional) Names and addresses of advisers (optional information) |
|---|---|---|
| Type of adviser Name Address |
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| Name of chief executive or names of senior staff members (optional information) | ||
| Lisa Bone, CEO |
Exemptions from disclosure
Reason for non-disclosure of key personnel details
N/A
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 Austin Position (for example Chair Secretary, Chair, etc) Date 24/7/23
CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A ndgpendent Examiner's Report Report to the trusteesl mgmbers of Hypemiobilily Syndrornes Association On accounts forthe year 9nded 31 December 2022 Charlty no lif any 1186735 Set out on pages 14-15 I report lo the trustees on my examination of the accounts of the above charity I'the Trust") lor the year ended 31 Dember 2022. Responsibilities and As the charity trustees of the Trust. you are responsibk for the preparation bas18 of report of the acwunls In accordance wth the requirements of the Charities Act 2011 1.the Acl'l 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 8pplicable Direc110115 given by the Charity Commission under section 14515llbl of the Act. I have completed my examination I confirm that no material matters have come lo my attention (other than that disclosed telow'l In connection with the examination which gives me cause to believe that in, any material respect. accounting reeords were not kept in accordance with section 130 of the Act or the accounts do not accord wth the accounting records Independent examiner's 5tatgment I have no cOnrn$ and have come across no other matters In connection with the examination to which attention should L* drawn in order lo enable a proper understanding ol the accounts to be reached. Please delete the words the brackets rfthey do not apply. Signed.. Date: 14107123 Name: Virginia Sanler Relovant professlonal qualificatlonlsl or body Ilf any): FCCA Addrets8.' Monetaire Accountants Limited. Sovefeign House, 22 Shelley Road Worthing, Wesl Sussex, BN11 1TU Sèction B Disc105ure Only complete If the examiner needs to highlight matters of concern Isee CC32, Independent examination of charity accounts.. directions and guidance for examinersl. IER October 2018
Givg here brlel delai18 of any Item8 that the examlner wl8hg8 to dls¢lose. IER October 2018
| Hypermobility Syndromes Association | Hypermobility Syndromes Association | Hypermobility Syndromes Association | 1186735 |
|---|---|---|---|
| Receipts andpayments accounts | |||
| For the period from |
01/01/2022 | To | 31/12/2022 |
CC16a
| For | the period from |
01/01/2022 | To | 31/12/2022 |
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| Section A Receipts and payments | Section A Receipts and payments | |||||
|---|---|---|---|---|---|---|
| A1 Receipts | Unrestricted funds to the nearest £ 10,021 16,092 3,053 62 - - - - 29,228 - - - 29,228 34,690 1,276 - - - - - - - 35,966 - - - 35,966 - 6,738 - 20,630 13,892 |
Restricted funds to the nearest £ - - - - - - - - - - - - - 3,575 - - - - - - - - 3,575 - - - 3,575 - 3,575 - 6,217 2,642 |
Endowment funds to the nearest £ - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - |
Total funds to the nearest £ 10,021 16,092 3,053 62 - - - - 29,228 - - - 29,228 38,265 1,276 - - - - - - - 39,541 - - - 39,541 - 10,313 |
Last year to the nearest £ |
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| Donations and Legacies | 10,021 | 11,686 | ||||
| Charitable Activities | 16,092 | 19,712 | ||||
| Trading | 3,053 | 2,911 | ||||
| Other Income | 62 | 816 | ||||
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| - | - | |||||
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| - | - | |||||
| Sub total(Gross income for AR) |
29,228 | 35,125 | ||||
| A2 Asset and investment sales, (see table). |
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| - | ||||||
| - | - | |||||
| Sub total | - | - | ||||
| Total receipts A3 Payments |
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| 35,125 | ||||||
| Charitable Activities | 34,690 | 32,976 | ||||
| Governance Costs | 1,276 | 1,776 | ||||
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| **Sub total ** | 35,966 | 34,752 | ||||
| A4 Asset and investment purchases, (see table) |
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| - | ||||||
| - | ||||||
| **Sub total ** | - | - | ||||
| Total payments Net of receipts/(payments) A5 Transfers between funds A6 Cash funds last year end Cash funds this year end |
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| 34,752 | ||||||
| - 6,738 | - 3,575 | - | - 10,313 | 373 | ||
| - | - | - | - | - | ||
| 20,630 | 6,217 | - | 26,847 | 26,474 | ||
| 13,892 | 2,642 | - | 16,534 | 26,847 |
CCXX R1 accounts (SS)
27/07/2023
1
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 B5 Liabilities B3 Investment assets B2 Other monetary assets B4 Assets retained for the charity’s own use B1 Cash funds |
Details Details Details Total cash funds (agree balances with receipts and payments account(s)) Details Bank Paypal Details Signature December payroll costs December payroll costs |
Unrestricted funds Restricted funds to nearest £ to nearest £ 13,631 2,642 261 - - - 13,892 2,642 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) General 1,668 Restricted 325 - - - Print Name |
Endowment funds to nearest £ |
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| - | |||
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| OK | |||
| Endowment funds to nearest £ |
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| Current value (optional) |
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| When due (optional) |
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| 03/01/23 | |||
| 03/01/23 | |||
| Date of approval |
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CCXX R2 accounts (SS)
27/07/2023
2