Trustees Annual Report
01 January 2021 – 31 December 2021
Charity name Lipoedema UK Other name the charity uses Lip UK Registered charity number 1181312 Charity’s principal address Foxfield House Chichester Road West WiDering West Sussex PO20 8QB
info@lipoedema.co.uk
| Contents |
|---|
| IntroducOon ............................................................................................................................................3 |
| Purpose of Lipoedema UK ..................................................................................................................3 |
| Main acOviOes of Lipoedema UK ........................................................................................................3 |
| Our team ................................................................................................................................................4 |
| Trustees ..............................................................................................................................................4 |
| Patrons and medical advisory team ...................................................................................................5 |
| Key acOviOes in 2021 – delivering our aims and purpose in Omes of covid-19 and lockdown ...............6 |
| Weekly sessions of Lipoedema UK’s virtual Health and Wellbeing Community .................................7 |
| Members conference .........................................................................................................................7 |
| NICE IntervenOonal Procedures Guidance: Non-cosmeOc liposucOon in the treatment of chronic |
| lipoedema IP1843 ...............................................................................................................................7 |
| Diet and lifestyle research between De Mon`ort University and Lipoedema UK ..............................8 |
| Social media .......................................................................................................................................8 |
| Website: www.lipoedema.co.uk .........................................................................................................9 |
| Healthcare professional events ..........................................................................................................9 |
| Legal structure and compliance ..........................................................................................................9 |
| Principal risks facing us as a charity ..................................................................................................10 |
| Finances ................................................................................................................................................10 |
| Member fundraising .........................................................................................................................10 |
| Sponsorship ......................................................................................................................................10 |
| Review of accounts ...........................................................................................................................10 |
| Investment and reserves ..................................................................................................................11 |
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Introduc-on
This report has been compiled by the Trustees to provide an update of acOviOes in 2021 for members and funders, and to comply with the charity’s reporOng obligaOons to the Charity Commission.
We would like to thank everyone who donated to us, gave us sponsorship or donated their Ome and/or resources. This support made all these acOviOes and achievements possible.
As trustees we understand that creaOng public benefit is integral to being a charity. We took account of the Charity Commission guidance on requirements for public benefit in determining our purposes and acOviOes 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 reporOng in the creaOon of this annual report and in consideraOon of our other communicaOons to beneficiaries, stakeholders and potenOal and exisOng funders.
Purpose of Lipoedema UK
To relieve the needs of people with Lipoedema, in parOcular, but not exclusively, by the provision of services, advice, informaOon and support; and to advance the educaOon of the public and medical community, in parOcular those involved in the diagnosis, treatment and care of those suffering Lipoedema.
Main ac-vi-es of Lipoedema UK
-
Provision of services, advice informaOon and support in relaOon to lipoedema
-
Advance the educaOon of healthcare professionals and the public
-
Advance the educaOon of those involved in the diagnosis, treatment and care of Lipoedema paOents
Sharie Fetzer, Chair
Kate Forster, Treasurer & Secretary
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Our team
Our team comprises of our trustees, members, volunteers and our medical advisors. Together this team supports our member acOviOes, deals with enquiries and provides input to our materials and website.
Members of our team also advocate for us, present at our conferences, deal with the press and work Orelessly to raise awareness of lipoedema amongst the general public and the medical profession.
RecruiOng addiOonal volunteers to respond to the opportuniOes and demands placed on us, and to deliver our charitable purposes, is a key acOvity and constraint, due to the debilitaOng effect that lipoedema has on many of our members.
Volunteer Nicola Kenworthy, Chair Sharie Fetzer, Nurse Consultants Mary Warrilow and Kris Jones
Trustees
| Trustees | |
|---|---|
| Role | Trustee |
| Chair | Sharie Fetzer |
| Secretary & Treasurer | Kate Forster, CharteredFCIPD |
| Trustee | Suzanne Evans, BA (Hons) |
| Trustee | Kris Jones (appointed 23 September 2021) |
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Patrons and medical advisory team
| Role | Name | Contact address |
|---|---|---|
| Patrons | Professor Peter M. MorOmer MD FRCP Dr KrisOana Gordon MBBS MRCP MD(Res) CLT |
St George’s NHS Trust, Blackshaw Road, TooOng, London, SW17 0QY St George’s NHS Trust, Blackshaw Road, TooOng, London, SW17 0QY |
| Nurse Consultants |
Mary Warrilow RGN, BSc (Hons), QN Kris Jones RGN, ENB931, ENB N34, Post Graduate Diploma Lymphoedema PracOce Sara Percival MSc Rhodri Harris RN, BSc (Hons |
Care of Lipoedema UK Lymphcare UK, The Lodge, Mary Stevens Hospice, 221 Hagley Road, Stourbridge, DY8 2JR East Sufolk and North East Essex NHS Trust Mill Road Therapy Centre, Mill Road, Colchester. EssexCO4 5LJ Accelerate CIC St Joseph’s Hospice, MareStreet,London,E8 4SA |
| 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 PracOOoners, 30 Euston Square, London Fitzalan Medical Group, Fitzalan Road, LiDlehampton, West Sussex, BN17 5JR Royal Derby Hospital, UDoxeter Road, Derby, DE22 3NE |
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Our long-awaited members conference – finally held in after lockdowns lifted in 2021
2021 proved to be a challenging year with conOnued restricOons on our acOviOes due to covid-19 and lockdowns. There was also increased pressure on our support and advisory acOviOes as paOents found it increasingly difficult to access support from tradiOonal primary care channels. Our conference was parOcularly stressful to plan with confidence with numbers, speakers and exhibitors difficult to predict.
Many plans to aDend and present at healthcare professional events remained on hold and we conOnued to delay the introducOon of our Ambassador programme designed to increase our trained team of volunteers. In addiOon to all our usual acOviOes, we also devoted considerable resources to represenOng paOent interests in the NICE review (see secOon: Nice IntervenOonal Procedures Guidance).
As we witnessed conOnuing stress and strains on our members, the team adapted our acOviOes and focus to find new ways of alleviaOng the isolaOon and lack of medical aDenOon experienced by our members. One key new way of doing this was through the conOnuaOon of our weekly online health and wellbeing sessions – see below.
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Weekly sessions of Lipoedema UK’s virtual Health and Wellbeing Community Following the 2020 launch of our on-line Health and Wellbeing community, in 2021 we evolved the format to increase content focussed on medical advice and moOvaOonal support, along with the opportunity for people to ‘meet’ in a safe and secure environment. Our Nurse Consultant team of Kris Jones, Sara Percival, Rhodri Harris and Mary Warrilow provided a regular feature of presentaOons and advice to approximately 50 members and the weekly session went from strength to strength during 2021. Many of our members told us that the sessions were a lifeline for them during lockdown and beyond.
Members conference
Originally, we had planned to hold our biggest ever conference in June 2020 for 200 people. We hoped this would substanOally increase our income and lead to relaOonships with new sponsors. Due to covid-19, we aDempted to reschedule to October 2020, but had to cancel this date due to the second lockdown. However, we were heartened by the way that members chose to wait for the rescheduled dates rather than cancel their places. The twoday conference eventually took place in October 2021 and was highly successful and well supported by both members, expert presenters on lipoedema and exhibitors.
NICE Interven-onal Procedures Guidance: Non-cosme-c liposuc-on in the treatment of chronic lipoedema IP1843
In 2020 NICE issued an invitaOon to Lipoedema UK to:
-
Provide an organisaOonal submission to share views on the procedure by 01 May 2021
-
Publicise the paOent quesOonnaire with our network to encourage people that have had the procedure to share their individual views and experiences
-
Comment on the drap guidance
-
Publicise the public consultaOon
Despite the restricOons of lockdown, the NICE review into liposucOon was potenOally the most significant iniOaOve for UK Lipoedema paOent care to date as it provided a great opportunity to present the wider case for provision of services for Lipoedema on the NHS. Out of necessity, it became the focus of a great deal of Ome and effort to respond in the most effecOve and appropriate way for significant part 2021. In order to gather the most wide-ranging evidence, Lipoedema UK devised an online paOent survey. This had an overwhelming response with 902 responses received in just two weeks. The depth of this
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informaOon enabled us to compile a detailed report not only of paOents experiences of liposucOon but also the wide ranging and open devastaOng effects that lipoedema has on a paOent’s quality of life. The survey data was analysed with specific reference to the format of the NICE review documentaOon. Lipoedema UK’s Chair Sharie Fetzer and Dr KrisOana Gordon were called as the two ‘expert witnesses’ interviewed by the NICE CommiDee during the first public review.
Following the submission to NICE and the CommiDee meeOngs Sharie Fetzer and Mary Warrilow published a detailed review covering the data submiDed to NICE. This is available as a download on our website: - hDps://www.lipoedema.co.uk/wp content/ uploads/2021/11/LUK-NCL-Bklt-Sept21WEBv9.pdf
Diet and lifestyle research between De MonSort University and Lipoedema UK Work conOnued with Dr Jessica Jin, Senior Lecturer in NutriOon, and Lipoedema UK on our joint research project to invesOgate the effect of diet and lifestyle on Lipoedema and to seek an opOmal diet for Lipoedema. It is envisaged that this project will conOnue for several years and lead to publishing various papers on the methods and findings. We are in the process of recruiOng a PhD student to assist with the project.
Social media
Social media, especially our Facebook page, conOnues to be an effecOve to way to reach new members and raise awareness amongst women who have developed lipoedema and may not be aware that it is a medical condiOon. Led by our Social Media Ambassador Tessa Sanderson, our social media figures are constantly growing and enable us to share up to date informaOon and receive feedback on the most relevant issues.
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Healthcare professional events
Nurse consultant Mary Warrilow (left) manning the stand to help educate health professionals
Lipoedema UK did manage to aDend a few significant Healthcare Professional events in 2021.
The first Lympoedema/Lipoedema live and online event aper lockdown was the BriOsh Journal of Community Nursing Lymphoedema conference on 10th June. Sharie Fetzer Lipoedema UK chaired the hybrid programme and gave a presentaOon on Lipoedema UK’s latest paOent survey on diet and Lifestyle. There was a noOceable sense of joy amongst the parOcipants to be meet and aDend an event in person aper so long being restricted to video-conferencing or being in isolaOon.
On July 9th Sharie was back in London to speak on Hormonal Changes: ContracepOon, Pregnancy, Childbirth and Menopause, to the Margaret Pike Trust at the Royal College of Physicians.
In September, we had a stand at the BriOsh Dermatological Nursing Group conference in Harrogate.
The final event we were able to aDend was the InternaOonal Lymphoedema FoundaOon conference in Denmark in November. This is an important internaOonal event and we were able to meet representaOves of many other paOent groups and significant internaOonal experts on lipoedema.
Legal structure and compliance
We have been incorporated as a FoundaOon Charitable Incorporated OrganisaOon since 20 December 2018. This builds on our work as an unincorporated charity, Lipoedema UK 1157716, founded in 2012.
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Our current trustees are people living with or treating Lipoedema who are all elected/ r e-elected at our AGM by our Members. 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 reputaOon grows we are asked to speak at more and more events or parOcipate in working groups, all of which involve expenses for us or our volunteers.
In order to take full advantage of all the opportuniOes that are increasingly available to us, we need to increase our income and our pool of suitably skilled people able to parOcipate on our behalf.
Finances
Member fundraising
We are always profoundly grateful for fundraising from our members and supporters. We celebrate their fundraising on our social media and in our news emails to members. We hope to see this source of income grow further as more people become aware of lipoedema and the devastaOng effect it has on both paOents and their families. As lipoedema is a chronic condiOon it frequently impinges on a paOent’s finances. This occurs in two major ways. First, issues related to the condiOon, such as pain or mobility issues, limit earning potenOal. Second, paOents are forced to fund their own, expensive treatments, such as conservaOve therapies or non-cosmeOc liposucOon. This situaOon creates financial hardship for many of our members and means many have insufficient funds to provide much direct financial support. However, many choose Lipoedema UK as their charity of for indirect funding sources such as Give as You Live.
Sponsorship
We are extremely grateful for the loyalty and support shown to Lipoedema UK from our core sponsors during the pandemic and very pleased to acquire new sponsors in 2021. Compression garments companies remain a crucial part of our financing and we value our partnerships with them and their willingness to develop new products that will alleviate specific symptoms. They also provide links, connecOons and partnerships for awareness raising withe the Healthcare profession.
Review of accounts
Our financial posiOon is outlined in our aDached accounts. AcOviOes in prior years are captured in the accounts of the unincorporated charity Lipoedema UK, registered charity number 1157716.
Covid-19 and its related lockdowns meant we were unable to offer many physical events for healthcare professional in 2021. Instead, we increased paOent support for members and
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general enquiries to provide a lifeline for paOents who were increasingly distressed and demoralised by the lack of support from their local primary care services.
Our spend on technology and website increased significant to provide an educaOonal tool and support for both healthcare professionals and paOents researching the symptoms and treatments for lipoedema.
We wish to further increase our income in the future, in order to increase the resources we have available to deliver projects to support healthcare professionals and people with lipoedema. Running a naOonal charity from a volunteer base is a struggle as the opportuniOes for our parOcipaOon challenge the resources we have available. It is also challenging to conOnue to staff an organisaOon when so many key roles – such as chairperson, treasurer and secretary – have been done voluntarily for so many years, and volunteers may find it challenging to conOnue providing such a high level of financial and pracOcal support into the future.
We are not limited by our ambiOons, 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 relaOvely small and we use our income to meet our expenses, rather than invesOng for the long term.
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Lipoedema UK
A Charitable Incorporated Organisation Number 1181312
Accounts
31 December 2021
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 25th July 2022
1
Lipoedema UK
Income and Expenditure Account for the year ended 31 December 2021
| 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 |
2021 £ 40,891 10,587 14,221 1,103 66,802 3,876 1,002 13,505 2,681 26,838 6,019 8,165 1,453 63,539 3,263 |
2020 £ 26,205 - 10,951 - |
|---|---|---|
| 37,156 | ||
| 1,555 533 2,070 3,878 12,903 5,841 5,994 827 |
||
| 33,601 | ||
| 3,555 |
2
Lipoedema UK Balance Sheet as at 31 December 2021
| Assets Bank/building society balances Liabilities Other liabilities and accruals Net business assets represented by Capital account: Balance at start of period Net Surplus |
2021 £ 16,210 16,210 600 600 15,610 12,347 3,263 15,610 |
2020 £ 17,582 |
|---|---|---|
| 17,582 | ||
| 5,235 | ||
| 5,235 | ||
| 12,347 | ||
| 8,791 3,556 |
||
| 12,347 |
3
Lipoedema UK Notes to the Accounts for the year ended 31 December 2021
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
Imdep¢•drni rvrt tts the tr¥Jl¢u of tAPOtde• UK Cbarity N••ber 1IST118 I relrt on of tk Tru# forthe yr t 31. Decanbu 2021. which ¥¢ sa wes I 4 in the attxheA swements Th¢chan'ty's ¢¢$ I res1£ f(x the weFrnt oftr Tr ¢h•rity'stru5ttts c(rtbiderth awjii Is rquiTrl fLYthI"5 vetr 5e£tion 144(21 of thE ClwrtK5 Aa X)I l {th¢ 2011 Aciitylth ex•mine the alUll l45 of the 2011 A¢t I4y5Xbl of the 2011 A • to statr wh#lKr Iwticul8r Mt¢S lo my •ityiiion of nde•dent ex•rniA¢r'i report Commissio depad¢nt eumi#tr' Jlat¢•ut {11 whKh ¥ivcs m¢ l¢Vet in any the keep recsyds in rdIKe 5tthiott 130 of the 2011 Ati reqwr¢rnentsof the 2011 Ad l•ve been ( 12)to whic14 in ryinm •tiry*ion sk#Mld b¢ orthrw ethk a TXOF¢r oftht NAme: lkn¥ld M MacKerÈzK Bsc CA 52 Crrfi Dn've. InVeD IV2 3 31° 2022
Lipoedema UK
A Charitable Incorporated Organisation Number 1181312
Accounts
31 December 2021
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 25th July 2022
1
Lipoedema UK
Income and Expenditure Account for the year ended 31 December 2021
| 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 |
2021 £ 40,891 10,587 14,221 1,103 66,802 3,876 1,002 13,505 2,681 26,838 6,019 8,165 1,453 63,539 3,263 |
2020 £ 26,205 - 10,951 - |
|---|---|---|
| 37,156 | ||
| 1,555 533 2,070 3,878 12,903 5,841 5,994 827 |
||
| 33,601 | ||
| 3,555 |
2
Lipoedema UK Balance Sheet as at 31 December 2021
| Assets Bank/building society balances Liabilities Other liabilities and accruals Net business assets represented by Capital account: Balance at start of period Net Surplus |
2021 £ 16,210 16,210 600 600 15,610 12,347 3,263 15,610 |
2020 £ 17,582 |
|---|---|---|
| 17,582 | ||
| 5,235 | ||
| 5,235 | ||
| 12,347 | ||
| 8,791 3,556 |
||
| 12,347 |
3
Lipoedema UK Notes to the Accounts for the year ended 31 December 2021
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
Imdep¢•drni rvrt tts the tr¥Jl¢u of tAPOtde• UK Cbarity N••ber 1IST118 I relrt on of tk Tru# forthe yr t 31. Decanbu 2021. which ¥¢ sa wes I 4 in the attxheA swements Th¢chan'ty's ¢¢$ I res1£ f(x the weFrnt oftr Tr ¢h•rity'stru5ttts c(rtbiderth awjii Is rquiTrl fLYthI"5 vetr 5e£tion 144(21 of thE ClwrtK5 Aa X)I l {th¢ 2011 Aciitylth ex•mine the alUll l45 of the 2011 A¢t I4y5Xbl of the 2011 A • to statr wh#lKr Iwticul8r Mt¢S lo my •ityiiion of nde•dent ex•rniA¢r'i report Commissio depad¢nt eumi#tr' Jlat¢•ut {11 whKh ¥ivcs m¢ l¢Vet in any the keep recsyds in rdIKe 5tthiott 130 of the 2011 Ati reqwr¢rnentsof the 2011 Ad l•ve been ( 12)to whic14 in ryinm •tiry*ion sk#Mld b¢ orthrw ethk a TXOF¢r oftht NAme: lkn¥ld M MacKerÈzK Bsc CA 52 Crrfi Dn've. InVeD IV2 3 31° 2022