Trustees Annual Report
01 January 2022 – 31 December 2022
Charity name Lipoedema UK
Other name the charity uses Lip UK
Registered charity number 1181312 Charity’s principal address Foxfield House Chichester Road West Wittering West Sussex PO20 8QB www.lipoedema.co.uk info@lipoedema.co.uk
Founding Member of the Lipedema World Alliance
Contents
Contents .................................................................................................................................................. 2 Introduction ........................................................................................................................................ 3 Purpose of Lipoedema UK ............................................................................................................... 3 Main Activities of Lipoedema UK .................................................................................................... 3 Our Team ............................................................................................................................................ 4 Trustees ........................................................................................................................................... 4 Patrons, Clinical & Medical Advisory Teams ................................................................................... 4 Key Activities In 2022 – Delivering Our Aims & Purpose .................................................................... 5 Weekly Webinars for Lipoedema UK Members.............................................................................. 6 International Collaboration ............................................................................................................. 6 Founding of the Lipedema World Alliance (LWA) ........................................................................... 7 NICE Interventional Procedures Guidance: Liposuction for chronic lipoedema [IPG721] Published 29 March 2022 ............................................................................................................... 9 Diet and Lifestyle Research De Montfort University and Lipoedema UK ..................................... 10 Social Media Activities .................................................................................................................. 10 Updating our website: www.lipoedema.co.uk ............................................................................. 11 Healthcare Professional Events .................................................................................................... 11 Legal structure & compliance ........................................................................................................... 12 Principal risks facing us as a charity .................................................................................................. 12 Finances ............................................................................................................................................ 12 Member Fundraising ..................................................................................................................... 12 Membership .................................................................................................................................. 12 Sponsorship ................................................................................................................................... 12 Review of Accounts ....................................................................................................................... 13 Investment and Reserves .............................................................................................................. 13
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Introduction
This report has been compiled by the Trustees to provide an update of activities in 2022 for members & funders, and to comply with the charity’s reporting obligations to the Charity Commission. We would like to thank everyone who donated or supported our activities though sponsorship as they made all these activities and achievements possible.
As trustees we understand that public benefit is part of what it means to be a charity. We took account of the Charity Commission guidance on requirements for public benefit in determining our purposes and activities when our charity was set up, and we are aware of the existence of the guidance on running our charity in a compliant manner to deliver public benefit. We refer to this guidance as our charity evolves and grows, to ensure that we remain appropriately focussed and managed.
We have taken account of the Charity Commission guidance on public benefit reporting in the creation of this annual report and in consideration of our other communications to beneficiaries and potential funders.
Purpose of Lipoedema UK
To relieve the needs of people with Lipoedema, in particular, but not exclusively, by the provision of services, advice, information and support; and to advance the education of the public, in particular those involved in the diagnosis, treatment and care of those suffering Lipoedema.
Main Activities of Lipoedema UK
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Provision of services, advice information and support
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Advance the education of the public
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Advance the education of those involved in the diagnosis, treatment and care
This report has been approved by the Board of Trustees, and is signed on their behalf on 20 October 2023 by:
Sharie Fetzer, Chair
Kate Forster, Treasurer & Secretary
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Our Team
Trustees
| ur Team ustees |
|
|---|---|
| Role | Trustee |
| Chair | Sharie Fetzer |
| Secretary & Treasurer | Kate Forster, Chartered FCIPD |
| Trustee | Suzanne Evans, BA (Hons) |
| Trustee | Kris Jones, RGN |
| Trustee | Sara Percival, MSc |
Our trustee recruitment comes from our membership and our advisory teams. All our current trustees have a personal connection to lipoedema. In 2022, we were delighted to welcome Sara Percival to the Board as a new Trustee. Sara is both one of our long-term members and an especially talented and experienced Lymphoedema and Lipoedema healthcare professional.
Patrons, Clinical & Medical Advisory Teams
| Role | Name | Contact Address |
| Patrons | Professor Peter M. Mortimer MD FRCP Dr Kristiana Gordon MBBS MRCP MD(Res) CLT |
St George’s NHS Trust, Blackshaw Road, Tooting, London, SW17 0QY |
| Nurse Consultants & Clinical Advisors |
Mary Warrilow RGN, BSc(Hons), QN Kris Jones RGN, ENB931, ENB N34, Post Graduate Diploma Lymphoedema Practice Rhodri Harris RGN Sara Percival MSc |
Care of Lipoedema UK Lymphcare UK, The Lodge, Mary Stevens Hospice, 221 Hagley Road, Stourbridge, DY8 2JR Care of Lipoedema UK Care of Lipoedema UK |
| Medical Advisors |
Dr Dirk Pilat FRCGP, PgDipGP (Otago) Dr Sarah Pledger FFSRH, MRCGP, MBBS, DRCOG Dr Vaughan Keeley PhD, FRCP |
Care of Royal College of General Practitioners 30 Euston Square, London Fitzallen Medical Group, Fitzalan Road, Littlehampton, West Sussex, BN17 5JR Royal Derby Hospital, Uttoxeter Road, Derby, DE22 3NE |
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Key Activities In 2022: Delivering Our Aims & Purpose
2022 proved to be a continuing challenging year to resume many of our usual activities prior to covid and lockdowns. Our support and advisory activities continued to experience new levels of demand as patients found it difficult to resume and access previously traditional primary care services. In this environment we decided to continue increasing our online
support for patients who reported difficulties in obtaining appointments with either their GPs or other primary care providers. Numbers of planed healthcare professional events remained low and our team also found it difficult to combine their return to normal working conditions with attending events as volunteers.
We witnessed continuing strains of loneliness and isolation from our members, so the team adapted our activities and focus to find new ways of alleviating the lack of face to face contact and continuing stressful conditions following reduced services throughout lockdown. Our email help line enquiries reflected the lack of medical attention experienced by our members. To meet this increased demand we spent more time and resources on one to one advice through our helpline and also by increasing the range of topics in our online webinars.
In addition to all our usual activities we also devoted considerable internal resources to the aftermath of the NICE review, including a feature on the BBC Radio 4 programme Woman’s Hour.
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Weekly Webinars for Lipoedema UK Members
Following the 2020 launch of our on-line Health & Wellbeing community in 2022 we evolved the format to increase the content of medical advice and motivational support, along with the opportunity to ‘meet’ in a safe and secure environment. Our Nurse Consultant/Clinical Advisor team of Kris Jones, Sara Percival, Rhodri Harris and Mary Warrilow provided a regular feature of presentations and advice to approximately 50 members and the weekly session went from strength to strength during 2022.
Many of our members told us our sessions continued to be a lifeline for them since lockdown, especially if they experienced worsening of their pre-existing medical conditions. We were delighted when the team’s success was acknowledged by a Silver Award at the British Journal of Nursing’s Chronic Oedema Nurse of the Year awards 2022.
International Collaboration
The situation for patients regarding the provision of healthcare services is almost identical both in the UK and internationally, with many people experiencing similar challenges in accessing lipedema diagnosis and treatment, despite their different healthcare systems and countries.
In 2022, Lipoedema UK strengthened its ties with other international patient organisations and healthcare experts. In June 2022, as part of Lipoedema Awareness
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Month, we took part in a series of international webinars featuring experts from around the world and also hosted our own webinar which we shared with the international community featuring the impact of lipoedema on younger patients. These webinars were organized by a triumvirate of lipedema charities: Lipoedema UK, LIO Lipedema Italia (based in Italy) and andLINFA (based in Portugal).
We regard international collaboration as an essential part of our work, to raise awareness of the experience of patients in the UK and to also bring information into the UK on the activities of non-UK healthcare professionals and researchers.
We approach this work always with our goal in mind that #TogetherWeCanBeatLipoedema and believe that it is essential to have the voice of patients not only heard, but also involved in addressing the challenges of living with lipoedema and determining research priorities.
Founding of the Lipedema World Alliance (LWA)
Building on the success of our international collaboration, we were delighted to formalise our relationships with over 100 respected international clinicians, healthcare professionals, scientific associations and other patient associations by helping to found the Lipedema World Alliance, an international not-for profit association. LWA was registered on 22 July 2022.
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The Lipedema World Alliance Board brings us together with several of our sister lipoedema associations and a range of international lipoedema practitioners/researchers:
Sandro Michelini (President), Karen Herbst (Vice-President), Manuel Cornely, Gabriele Faerber, Isabel Forner Cordero, Mojtaba Ghods, Philipp Kruppa, Serena Michelini, José Luis Simarro, Thomas Wright, and then two representatives from each of: LIO Lipedema Italia, Lipoedema UK and andLINFA.
As there are multiple different spellings of lipoedema, it was decided to use Lipedema, without the o, in the title of the LWA and so when we issue or author LWA publications we will use lipedema; but continue to use the UK spelling of lipoedema in our own domestic activities.
Founding the LWA was a significant activity for us in 2022, and we are very pleased to collaborate with over 100 other passionate people and organisations. We feel that this collaboration amplifies all our own individual efforts and will be transformative for people living with lipoedema.
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NICE Interventional Procedures Guidance: Liposuction for chronic lipoedema [IPG721] Published 29 March 2022
The National Institute for Health and Care Excellence (NICE) carried out a rapid review of the evidence into the provision of liposuction for lipoedema in the UK in 2021-2022.
Lipoedema UK were actively engaged in all stages of NICE’s review process and submitted detailed evidence of the effects of lipoedema on patients’ long term health and their experiences of liposuction, including the feedback of over 900 respondents to our 2021 survey.
The final recommendations published by NICE were:
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1.1 Evidence on the safety of liposuction for chronic lipoedema is inadequate but raises concerns of major adverse events such as fluid imbalance, fat embolism, deep vein thrombosis, and toxicity from local anaesthetic agents. Evidence on the efficacy is also inadequate, based mainly on retrospective studies with methodological limitations. Therefore, this procedure should only be used in the context of research.
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1.2 Further research should report:
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patient selection, including age, effects of hormonal changes (which should include effects seen during puberty and menopause) and the severity and site of disease
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details of the number and duration of procedures, the liposuction technique used (including the type of anaesthesia and fluid balance during the procedure), and any procedure-related complications
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long-term outcomes, including weight and body mass index changes
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patient-reported outcomes, including quality of life.
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1.3 Patient selection should be done by a multidisciplinary team, including clinicians with expertise in managing lipoedema.
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1.4 The procedure should only be done in specialist centres by surgeons experienced in this procedure.
This classification of a procedure as only to be used in the content of research is defined by NICE as: NICE consider there to be unresolved uncertainties or that a procedure is still considered experimental, so they recommend clinicians only carry out the procedure in formal research studies which were approved by ethics committees.
NICE’s recommendations effectively stopped almost all liposuction operations in the UK leaving patients either half-way through treatments or having to seek surgery outside the UK.
Whilst Lipoedema UK is disappointed that NICE are not yet in a position to fully recommend the provision of liposuction for lipoedema by the NHS, there was clear recognition given by the review committee to the impact that lipoedema has on peoples’ quality of life. Our thanks go to all our members and those who responded to our survey with their stories, which enabled us to help the NICE committee understand the need for better treatment options than the current highly limited provision. Those personal stories led them to conclude that lipoedema is still under-recognised and can be “extremely debilitating”.
Furthermore, NICE make several references to lipoedema being distinct from obesity and lymphoedema; and acknowledge the limited range of treatment options for lipoedema at this time. These are both important conclusions and we know NICE support our desire for better care for those living with lipoedema, and understand how hard it can be as they also state: “The size and shape of legs and the resultant mobility issues and pain, can have a profoundly negative effect on quality of life and physical and mental health” .
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Our survey and our report to NICE can be downloaded from the liposuction area on our website.
We all recognise that there is currently limited long-term research data into liposuction for lipoedema and that NICE have rigorous expectations for the design of research that they consider to be the “gold standard”. NICE acknowledge the research currently published and that underway, and have committed to reviewing their guidance after a randomised control trial in Germany is completed and published. Lipoedema UK continues to campaign and seek more evidence to present to NICE at their next review in March 2025, or earlier, and continues to communicate with NICE.
Diet and Lifestyle Research De Montfort University and Lipoedema UK
Work continued with Dr Jessica Jin, Senior Lecturer in Nutrition, on our joint research project to investigate the effect of diet and lifestyle on Lipoedema. The project is still seeking direct funding to enable it to continue and recruit a PhD student to assist with the project. Dr Jinn and Lipoedema UK continue to be committed to the project but other commitments and priorities for both parties have made it difficult to devote time to the project in 2022.
Social Media Activities
Social media, continues to be an effective way to reach new members and raise awareness amongst women who may not be aware that they have undiagnosed lipoedema. Our social media reach continues to grow along with our presence on other organisations’ social media as we become more integrated in a wider lipoedema network.
During June, Lipoedema Awareness month we spread word of our international initiatives and shared webinars, including live streaming them on Facebook and You Tube. As part of our collaboration with LIO and andLINFA, and thanks to the support of a range of sponsors, we were able to have sessions streamed with live translation so that people could hear the presentations in English, Portuguese or Italian, and we were also able to translate presenters who were not presenting in English, such as Dr Simarro who gave an update in Spanish on his work in Spain.
Using a variety of social media to stream these sessions helped us all reach a range of healthcare professionals and patients, and generated some useful discussions and participation.
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Updating our website: www.lipoedema.co.uk
Our website continues to provide a wealth of information for both patients and health care patients seeking information on symptoms and treatments and is referenced by other reputable websites such as that of the NHS.
As always, we spent time and resources adding content to ensure we keep our website up to date.
Healthcare Professional Events
Lipoedema UK attended and exhibited at several significant Healthcare Professional events in 2022, including The British Journal of Community Nursing Lymphoedema conferences in London and Manchester which were both chaired by our own Chair, Sharie Fetzer. Others we attended included The British Association of Dermatologists (BAD) Conference in Glasgow in July and the British Lymphology (BLS) Conference in Staffordshire in October.
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Legal structure & compliance
We are incorporated as a Foundation Charitable Incorporated Organisation since 20 December 2018, building on our work as an unincorporated charity, Lipoedema UK 1157716, founded in 2012.
Our trustees are recruited from within our wider membership and all currently are people living with Lipoedema. Our structure is a simple one with a small group of trustees and a larger team of volunteers.
Principal risks facing us as a charity
Resources. We remain significantly constrained by volunteer capacity and our finances. As our reputation grows we are asked to speak at more and more events or participate in working groups, all of which involve expenses for us or our volunteers.
In order to take full advantage of all the opportunities that are increasingly available to us, we need to increase our income and our pool of suitably skilled people able to participate on our behalf.
Finances
Member Fundraising
We are always profoundly grateful for fundraising from our members and supporters and acknowledge and celebrate their fundraising on our social media and in our news emails to members. Our membership fees and members fundraising has grown along with our activities and support for individuals, although as lipoedema is a chronic condition it frequently impinges on a patient’s earning power. Lack of NHS support for treatments continues to leave patients forced to fund their own, often expensive, treatments, which has become more complex since the NICE review. We continue to seek indirect funding through sources such as Give as you Live and other fundraising platforms.
Membership
By providing our online sessions as closed zoom calls to our members, we maintain the investment of our resources into these sessions for those who join us as members, both making the space safer for them and helping encourage enquirers to become members.
Our members provide us both with important funds for our work and with their stories and experiences, and we appreciate the value of these non-financial and financial contributions.
Sponsorship
We are extremely grateful to the loyalty and support shown to Lipoedema UK from our core sponsors. Sponsorship and other income was reduced from the previous year due to the fact we did not hold a conference. Compression garments companies remain a crucial part of our financing and we value our partnership with them and their willingness to develop new products to alleviate specific symptoms. They also provide links, connections and partnerships for awareness raising with healthcare professionals.
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Review of Accounts
Our financial position is outlined in our attached accounts. Activities in historical prior years are captured in the accounts of the unincorporated charity Lipoedema UK, registered charity number 1157716.
The lack of physical events for healthcare professional in 2022 enabled us to dedicate our time and resources to providing increased patient support for members and also dealing with many general enquiries, providing a lifeline for patients who were increasingly distressed and demoralised by the lack of support from their local primary care services.
As so much contact was remote, it remained important to maintain and enhance our website so that it continued to provide an educational tool and resource for both healthcare professionals and patients researching the symptoms and treatments for lipoedema.
We wish to further increase our income in the future, in order to increase our resources available to deliver projects to support healthcare professionals and people with lipoedema. Running a national charity from a volunteer base is always challenging and especially as demand for our support activities becomes more complex and we need to collaborate internationally. We are not limited by our ambitions but by our resources, both financial and people.
Investment and Reserves
We monitor our annual income in order to ensure we can meet commitments as they arise. Our funds are managed through our bank account. We do not invest funds elsewhere as our cash reserves are relatively small and we use our income to meet our expenses, rather than investing for the long term.
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Lipoedema UK
A Charitable Incorporated Organisation Number 1181312
Accounts
31 December 2022
Lipoedema UK
Approval statement
I approve the accounts which comprise of the Income and Expenditure Account, the Balance Sheet and the related notes. I acknowledge my responsibility for the accounts, including the appropriateness of the applicable financial reporting framework as set out in note 1, and for providing with all information and explanations necessary for their compilation.
Sharie Fetzer Chair 12th May 2023
1
Lipoedema UK
Income and Expenditure Account for the year ended 31 December 2022
| Income Sponsorship & Donations Conference and Exhibitor payment Membership Publications Expenses Design and Print Administration Expenses Conference and AGM Healthcare Professional Awareness Events Membership and Healthcare Professional Support CRM & IT Systems Website Accountancy, Insurance and other professional fees Surplus |
2022 £ 32,032 - 15,472 1,775 49,279 5,035 2,150 3,177 2,966 17,227 6,888 3,586 1,688 42,717 6,562 |
2021 £ 40,891 10,587 14,221 1,103 |
|---|---|---|
| 66,802 | ||
| 3,876 1,002 13,505 2,682 26,838 6,019 8,165 1,453 |
||
| 63,540 | ||
| 3,262 |
2
Lipoedema UK Balance Sheet as at 31 December 2022
| Assets Bank/building society balances Liabilities Other liabilities and accruals Net business assets represented by Capital account: Balance at start of period Net Surplus |
2022 £ 22,772 22,772 600 600 22,172 15,610 6,562 22,172 |
2021 £ 16,210 |
|---|---|---|
| 16,210 | ||
| 600 | ||
| 600 | ||
| 15,610 | ||
| 12,347 3,263 |
||
| 15,610 |
3
Lipoedema UK Notes to the Accounts for the year ended 31 December 2022
1 Accounting basis
The accounts have been compiled on a basis that enables a deficit or surplus to be calculated in accordance with UK Generally Accepted Accounting Practice and that provides sufficient and relevant information to enable the completion of a tax return.
4
Cknrity N•Mber I IlJ1312
I reF%)rt on the ofth¢ TTPASt for yeuentsl 31* De¢
Lipoedema UK
A Charitable Incorporated Organisation Number 1181312
Accounts
31 December 2022
Lipoedema UK
Approval statement
I approve the accounts which comprise of the Income and Expenditure Account, the Balance Sheet and the related notes. I acknowledge my responsibility for the accounts, including the appropriateness of the applicable financial reporting framework as set out in note 1, and for providing with all information and explanations necessary for their compilation.
Sharie Fetzer Chair 12th May 2023
1
Lipoedema UK
Income and Expenditure Account for the year ended 31 December 2022
| Income Sponsorship & Donations Conference and Exhibitor payment Membership Publications Expenses Design and Print Administration Expenses Conference and AGM Healthcare Professional Awareness Events Membership and Healthcare Professional Support CRM & IT Systems Website Accountancy, Insurance and other professional fees Surplus |
2022 £ 32,032 - 15,472 1,775 49,279 5,035 2,150 3,177 2,966 17,227 6,888 3,586 1,688 42,717 6,562 |
2021 £ 40,891 10,587 14,221 1,103 |
|---|---|---|
| 66,802 | ||
| 3,876 1,002 13,505 2,682 26,838 6,019 8,165 1,453 |
||
| 63,540 | ||
| 3,262 |
2
Lipoedema UK Balance Sheet as at 31 December 2022
| Assets Bank/building society balances Liabilities Other liabilities and accruals Net business assets represented by Capital account: Balance at start of period Net Surplus |
2022 £ 22,772 22,772 600 600 22,172 15,610 6,562 22,172 |
2021 £ 16,210 |
|---|---|---|
| 16,210 | ||
| 600 | ||
| 600 | ||
| 15,610 | ||
| 12,347 3,263 |
||
| 15,610 |
3
Lipoedema UK Notes to the Accounts for the year ended 31 December 2022
1 Accounting basis
The accounts have been compiled on a basis that enables a deficit or surplus to be calculated in accordance with UK Generally Accepted Accounting Practice and that provides sufficient and relevant information to enable the completion of a tax return.
4
Cknrity N•Mber I IlJ1312
I reF%)rt on the ofth¢ TTPASt for yeuentsl 31* De¢