PMR Polymyalgia Rheumatica & Giant Cell Arteritis UK Accounts and Annual Report 2023-2024
Message from Chair of Trustees
Whenever I write this annual message I am amazed how much has changed in a year. although our core aims to support our members and facilitate improvements in the management of PMR and GCA remain unaltered. It has been a busy year again.
At the �me of our annual general mee�ng last year we said goodbye to Candy Horsbrugh who was our director for over five years, steered us through the Covid-19 years, and did so much to innovate and to improve what we do. But we were very lucky to a�ract Sophie Boyce as our new director and she is proving a brilliant choice. We have also had changes on the trustee board. We said goodbye to Chris Young who in par�cular steered the helpline for many years, and Sara Muller who provided invaluable scien�fic advice to the board and shaped our research agenda, and last but not least we also said goodbye to Penny Denby who not only chaired the board of trustees, but was immensely ac�ve in organising events and expanding groups in Kent and South London. We miss them but have been very pleased to welcome new trustees – Fiona Johnson, Gail Booth and Bill Mansfield – and their biographies can be found on the website.
named the PMR Paradox, looking at why there seem to be fewer cases of PMR in the north of England compared with the south. With Dr Sarah Mackie from Leeds, well known to most of you from her webinars and contribu�ons to Newswire, we were successful in our applica�on to the pres�gious NIHR, the Na�onal Ins�tute for Health Services Research, to look into this. As a result we now have a research fellow, Lucas Cou�n, in the team.
The research projects we funded ourselves, thanks to a very generous dona�on from one of our members, have come to frui�on. Dr Max Yates, in Norwich, has completed his research into exactly how cor�costeroids are being used in the treatment of polymyalgia rheuma�ca, and we have published the evidence-based exercise advice leaflet created by Dr Anne O'Brien and her colleagues in Keele University.
Please look into the details of everything we do in this report. But when I say 'we', we are of course dependent on all of you, especially those of you who volunteer in so many different ways. We are hugely grateful for all that help. But we always seek to recruit more, especially for our telephone helpline and group organisers. If you are interested, please drop us an email – info@pmrgca.org.uk.
Humphrey Hodgson
Chair of Trustees
Membership
Membership – our driving force.
Our members aren’t just vital to the work we do, they are the reason we exist. Our members shape our services and strategy, they are our best ambassadors, and we are always bowled over by their generosity in sharing their �me and experience to help others. They volunteer, par�cipate in research, raise awareness and fundraise.
We keep our membership fee as low as possible, and by the end of March 2024 we had 1600 members, of which 449 were new members during 2023/2024. This includes pa�ent, friend and professional members.
suffering was a great comfort to me. Knowing you were there if I wanted you!’
‘It made me feel that I was heard. It helped me understand my condi�on be�er. It altered my mindset that I should be able to do everything I was able to do before I was diagnosed. it helped me to explain to others how the condi�on affected me.’
‘Knowing I'm not alone. Having never heard of PMR and being diagnosed during lockdown the charity and Kate Gilbert's book became my support system.’
‘Easy and comprehensive access to a wealth of informa�on whether from fellow sufferers/the professionals and the charity itself has been invaluable. I never feel as if I’m alone in this.’
Members’ Day
Our 2023 Members’ Day and AGM took place online again. Our speakers were Dr Lorraine Watson, Professor Hector Chinnoy and Will Gregory, and Dr Leah Bousie.
Dr Lorraine Watson, Clinical Die�cian from Keele University Medical School, spoke about managing appe�te and maintaining a healthy weight. The talk touched on por�on control, balanced meals and healthy snacking, with a Q&A that included discussions about comfort ea�ng and ea�ng the right foods to limit the increased hunger some people experience while on steroids.
Professor Hector Chinnoy, Consultant Rheumatologist at Salford Royal NHS Founda�on Trust, and Will Gregory, Consultant Physiotherapist at Salford Royal and Vice President of the Bri�sh Society of Rheumatology, gave a talk on muscle weakness and improving muscle strength, general fitness and balance through exercise.
Dr Leah Bousie, Clinical Psychologist at Central London Community NHS Trust, spoke about the affects steroid use can have on our ability to regulate mood, the way our bodies regulate emo�on, and steps we can take to manage and improve our mood and mo�va�on.
All of our speakers were so generous in giving their �me to make Members’ Day varied and informa�ve for those that a�ended or watched the recording a�erwards.
‘I found it all interes�ng and par�cularly found the mindfulness presenta�on useful.’
‘It was a very well balanced and informa�ve event. Excellent to have it on Zoom. Good Q&A via chat. Each guest was excellent. Good to have experts in their field. The �mings were good so that people didn't waffle, were concise but got points across.’
‘Being able to ask ques�ons in the chat from the experts, par�cularly the two guys from Salford about muscle, bone, exercise. Not o�en you get direct access to such experts!’
‘All speakers were excep�onally good, thank you, with "down to earth" language everyone could understand. It made me realise that I am not just imagining all the things I suffer from.’
PMRGCAuk Week 2023
PMRGCAuk week 2023 remained online in June. We had two great guest speakers and more than 320 members and guests to our PMRGCAuk week webinars.
Nuffield Joint Pain Programme, which a number of PMRGCAuk members have taken part in. The programme is a clinically designed interven�on providing a mix of educa�on, physical ac�vity and wellbeing support designed to help people become more ac�ve. It is a free programme that runs for six months.
Dr Ben Mulhearn, Rheumatology Registrar and Academic Clinical Fellow at Bath University, spoke about GCA. His talk covered the poten�al causes of GCA, the progress being made on diagnosis, and research he is involved with into reducing the complica�ons of GCA.
Thank you to all our members who got involved with fundraising and awareness-raising efforts during PMRGCAuk week, which included coffee mornings, bake sales, an open studio art sale, obstacle runners and more.
‘This webinar was one of the very best I’ve seen. Dr Mulhearn was very approachable and used visuals and language that were easy to understand.’
‘I was par�cularly interested in the GCA seminar. The speaker was excellent and I learned a lot. I get a sense of the science moving on and we are privileged to hear about developments early. I sent the link to my rheumatologist.’
‘Well presented with helpful informa�on for self-help.’
Providing support and informa�on
We provide support through our Telephone Helpline, our na�onal network of Support Groups, through our online forum through HealthUnlocked, and on our own website and social media feeds.
Telephone Helpline
Our telephone helpline team take calls from Monday to Friday, 9am to 5pm, and callers are invited to leave their details for a call back if their call can’t be answered immediately. The team consists of six volunteers: Monica Alderton, Stephanie Beer, Trish Galli, Fiona Johnson, Yvonne McGowan and Chris Young who have all experienced PMR or GCA, and we can’t thank them enough for the vital support they provide to callers.
Un�l recently the organisa�on of the rotas for the volunteer team alongside other administra�ve tasks was undertaken by Chris Young who had been a member of the Helpline team since its original incep�on. Chris stepped down from this role in September 2023, but remains a key part of the team and Fiona Johnson who has taken on the administra�ve func�ons is very grateful for her con�nued commitment to the Helpline.
The Helpline team has con�nued to work with trainer Alice Hanscomb (thanks to grant support) and this has enabled the volunteers to develop their skills and to improve their prac�ce.
The Helpline volunteers spoke to 356 callers from April 2023 to March 2024, with slightly fewer calls received in December than the rest of the year.
Sta�s�cs
-
74% of callers had PMR; 16% GCA; 10% had both. This is a very similar spread to 2022/2023.
-
The average age of callers was 76 years old.
-
76% of callers were female; 24% male.
-
43% of callers were newly or recently diagnosed; 40% had been diagnosed between 1-4 years and 12% had been diagnosed over five years. 5% of callers did not disclose how long they had been diagnosed or were calling on behalf of someone else.
-
once.
-
88% of callers were seeking more informa�on and at the end of their call many were directed to our website for more informa�on or sent an informa�on pack.
-
45% of callers wanted to talk about prednisolone in general, with 51% wan�ng to talk more specifically about steroid tapering and 11% about steroid sparing drugs.
-
58% of callers expressed that they wanted to talk about their concerns with someone who understands what they are going through and has experience of the condi�on(s) and of being on long-term steroids. This is an increase from just under 50% last year.
-
28% of callers are recorded as being members of PMRGCAuk, which is an increase from 20% in 2022/2023.
Support groups
Our local support groups remain a valuable resource for members and non-members around the country. Not only do they offer much needed support to those that a�end, but they also help to grow the reach of the charity and spread awareness of PMR and GCA.
2022-2023 saw the re-emergence of more in-person support groups as we moved further away from the pandemic and 2023-2024 has seen many of these groups thrive and grow. There con�nues to be a great diversity in the make-up and organisa�on of the support groups. The preferred way forward seems to be the relaxed meet-up – o�en in a local coffee shop or small community venue – where members can talk about their shared experiences in a relaxed and friendly environment. Some groups con�nue to organise guest speakers and workshops, which are immensely valued by those that a�end, especially when there is a suppor�ve local rheumatology department that is able to engage with mee�ngs.
Online mee�ngs con�nue to be important, especially for those that don’t have a local support group or aren’t able to a�end their local group in-person.
organisers by Neelam Russell, funded by grants from Kent Community Founda�on (£4857) and Sevenoaks Community Founda�on (£1400). We con�nue to update our website with details of each group’s next mee�ng and support GOs to adver�se their groups locally.
We are always warmed to hear the posi�ve impact people have felt from a�ending a support group and we cannot thank our GOs enough for making them possible.
‘The mee�ngs are very good and con�nue to develop.’
‘The group I a�end is excellent. Literature is available and we hopefully help and support each other by talking about our experiences.’
‘I went to one and everyone was friendly and suppor�ve.’
PMRGCAuk Informa�on Packs
Our informa�on packs con�nue to be a popular resource, with the total number of packs requested in 2023-2024 represen�ng a 52% increase on 2022-2023’s figures. The informa�on packs can be requested online through our website, and requests also come in through the telephone helpline and direct to the office via email or telephone.
The packs are available as a digital copy – which is sent automa�cally when a request is made through the website, and in hard copy. They consist of informa�on about the charity, our Symptoms and How We Can Help leaflets, booklets produced in conjunc�on with Versus Arthri�s, Bri�sh Society for Rheumatology (BSR) guidelines on PMR and GCA, and details of how to join the charity.
2020/2021
Total informa�on packs requested: 603
Hard copy: 171 Digital copy: 432
2021/2022
Total informa�on packs requested: 866
Hard copy: 303 Digital copy: 563
2022/2023
Total informa�on packs requested: 1046
Hard copy: 342 Digital copy: 704
2023/2024
Total informa�on packs requested: 1590
Hard copy: 349 Digital copy: 1241
Our thanks go to Laurene Brooks, who volunteers her �me to send out all hard copy informa�on packs and track the informa�on and figures on packs sent out.
HealthUnlocked Forum
Our PMRGCAuk forum is provided through the HealthUnlocked pla�orm. It is a pa�ent-led community that allows members to share their experiences and seek support from others who have, or have had, PMR/GCA.
You don’t have to be a member of the charity to access the forum and it has members from around the globe. It is a very ac�ve forum with a mix of longstanding and regular users, and those that drop in more irregularly.
At the end of March 2024, we had 4,513 ac�ve members. This number is based on the number of people that have logged onto HealthUnlocked in the past month, and it fluctuates throughout the year. There was an average of around 195 new members signing up each month.
In March 2024, there were 348 posts (threads) made on the forum, invi�ng a total of 6293 replies from members.
very grateful for all the support we receive on HealthUnlocked, but par�cularly to our volunteers known as PMRPro and DorsetLady who work �relessly to ensure the smooth running of the forum.
‘This was a lifesaver for me. I found it a�er reading Kate Gilbert's book, which I ordered on Amazon. I had never heard of PMR before ge�ng diagnosed by my GP.’
‘I have learnt more from the contributors to HealthUnlocked than anyone else.’
PMR Myth Bus�ng Campaign
In August 2023 we launched the PMR Myth Bus�ng Campaign – a digital campaign to raise awareness of PMR in general, and specifically to dispel some of the myths that pa�ents o�en encounter.
We worked on the project with Dr Sarah Mackie and an involved pa�ent group to understand which myths and misconcep�ons we should focus on. We worked with graphic designer Vince Walden, who generously volunteered his �me, to produce four infographics that were promoted across our website, social media and email.
We are very grateful to everyone who got involved whether it was in the pa�ent focus groups, or sharing our emails, tweets and posts. We reached tens of thousands of people, generated in excess of 2,500 clicks on our website and generated lots of discussion.
We give par�cular thanks to Joan Binns, a former member, who made this work possible by leaving a legacy dona�on to us in her will.
‘Thanks so much for trying to bring PMR into everybody's radar as it is an unknown illness for the majority of the population.’
‘Brilliant, just seen the post on Twitter and I liked and retweeted it straight away.’
Research and awareness
In 2021, PMRGCAuk received a generous dona�on from one our members who wanted to fund research into PMR. This year saw the frui�on of the work funded by this dona�on.
In January, we were delighted to launch the new booklet Maintaining movement, ac�vity and exercise with PMR produced by Dr Anne O’Brien, Senior Physiotherapy Lecturer at Keele University, and developed alongside a team of professionals from Keele and Leeds Universi�es and pa�ent involvement. The booklet is available to download from our website with print copies available on request. Exercises included in the booklet are also suitable for those with GCA.
Dr Max Yates also completed his study of those living with PMR in England who are part of the ECLIPSE live database used by the NHS. The work looked to be�er understand steroid prescrip�ons for those with PMR, whether they fall in line with best prac�ce guidelines for long term steroid exposure, and how this data can be more easily tracked and monitored by healthcare professionals. Dr Yates is con�nuing to work with PMRGCAuk and ECLIPSE on future grant submissions to improve the way PMR is managed na�onally.
In September, we also began work on an NIHR funded research project in collabora�on with Keele and Leeds Universi�es. The PMR Paradox project will run un�l March 2025 and looks to be�er understand why there are fewer diagnoses of PMR in the north of England than the south, when global data suggests that prevalence increases the further you go from the equator. We have employed Lucas Cou�n to work on the project as our Northern Outreach Lead.
‘The exercise booklet has been invaluable to me – could not possibly be improved!’
Financial Review
than last year (£26,185) and is consistent with our strategy of increasing services by u�lising the money received from legacies in earlier years.
Income
Income for the year was £116,645. Our main source of income is the subscrip�ons and dona�ons of the charity’s members and supporters which totalled £71,375 and represents a healthy increase of almost 20% over the previous year.
We received £14,513 from two legacies, £17,330 from the PMR Paradox project with Leeds University, £8,111 of interest on the investment of our surplus funds and £5,316 from fundraising and other ac�vi�es.
Expenditure
Expenditure for the year was £140,393 of which the major cost was salaries totalling £100,689. Expenditure on restricted funds included the funding for our support group networks in Kent and Sussex, a grant of £9,700 to Keele University for the produc�on of the PMR Exercise Booklet and funding the helpline volunteer training programme.
Balance Sheet
The trustees will con�nue to use these reserves and future income to support the needs of its members and to develop the services for its members in a sustainable way.
Reserves analysis
During the year the Legacy Reserve reduced by £7,575, Restricted Reserves reduced by £20,194 and the General Reserve increased by £4,021 to £73,334 and remains consistent with the reserves policy to maintain at least three to six months of opera�ng costs in line with Charity Commission guidance.
Reserves Policy
con�nue to meet their obliga�ons and to show that excess reserves are not being held. The trustees have resolved to maintain the following reserves out of unrestricted funds.
1. General Reserve
months of the charity’s ongoing opera�ng costs.
2. Legacies Reserve
enable the trustees to manage large unrestricted legacies in an efficient and effec�ve manner to best promote the charity’s objec�ves and the public benefit. This policy provides
for the steady and controlled release of such funds into the charity’s general reserves in order to avoid the financial distor�ons and instabili�es which can be created by the irregular and unexpected receipt of significant legacies.
The Trustees have established the following principles to apply to the Legacy Reserve:
-
General Reserve and any excess over £5,000 will be added to the Legacies Reserve.
-
previously added to the Legacies Reserve will be released to the General Reserve.
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Statement of Flnanclal Activltles CHARITY (OMMISSION FOR ENGLAND ANO WAIES PMRGCAuk Charity Trk> 112872J 67638Bg Amual accounts for t riod Olm2025 3110J12024 Section A Statement of financial activities (including summary income and expenditure account) Restrb•d UnrMtrtl•d nd Prk< y ttr¥ty nd¥ nds Tdal In¢omln9 r•#ou•S IP4ot• 3> F01 F02 F03 F04 FOS 11.749 1.983 3.809 799 8.112 799 8.112 ro R•¥our¢•¥ •xp•nthd INol• 41 W•ndiiur• M.. 116.645 116645 77.498 15.675 84.313 10.492 9.702 97.587 5242 120 199 5,242 140 393 3.69$ 103.683 N•t In¢om•ll•xp•nthr•l b•foTr t•x forth• r•portlng p•rlod Xl,194 23.748 26.185 N•t In¢om•ll•xp•n¢Mwr•l tsx b• Inv•stment gall1(10$81 23 748 Net Incomellexpendlur•l Exiraoydlnary ithms Tr•nsl•rs b••+n funds other recounlsed galnslllo88•81: .194 23.748 26.185 N•tmovwmertln fvn¢l• R8conclll•Won orrunds.. To1al szj 182.012 57.361 239 373 265.558
Balance Sh•o1 67SJ889 Section B Balance sheet Flxod assots FOI F03 F04 F05 Intan•1b aiA•t• Tanglbl• 3xsfrti In¥•¥tm•nts Current as•ets stocki D•btots Investm•nts ¢wh At bank and hand Tot•icwrnit#S•lS Blo INot• 71 29.329 1f6.779 23 166 219.274 8,283 181,272 52.740 242,295 138 032 14-,46 182 107 28.747 8420 37 167 Crndltorn.. •mounts f•Wth# du• wlthln y•4r INot• 81 3.649 3.649 2.922 Il•1 curnl•s••Trflktslll1rf •12 178.458 37.187 215.6 239.373 T?t•l ••Mtts I•M ¢rni 8fJ 178.458 37 167 215 625 239.)73 Cr•dltorn'. •mounts f•llng du• •ft•i on• ygaw Piovhlon•lvr Il•bllll1•• rol•l •M•t• •rllablNts Funds of the Charfty 816 178458 37,167 215.625 239.373 Ér0W•D1lUd ft•¥trkt•d In¢om• fund• INth• Unr•¥trlrl•d lund• INot• 111 A•vabJ*llon r•Mr¥• Bl 37.167 37.167 178.456 57.361 178.458 182Q12 TothlfwKIffj 178.458 37.167 215.625 239.373 Pn"rt Narr son G•off
Notes to the Financial Statements
1. Basis of Prepara�on
cost conven�on.
Standard applicable in the UK and Republic of Ireland (FRS 102). The Charity is a public benefit en�ty for the purposes of FRS 102 and therefore the Charity also prepares its financial statements in accordance with the Statement of Recommended Prac�ce applicable to chari�es preparing their accounts in accordance with the Financial Repor�ng Standard applicable in the UK and Republic of Ireland (The FRS 102 Chari�es SORP) and the Chari�es Act 2011.
Charity. Monetary amounts in these financial statements are rounded to the nearest pound.
Going concern
At the �me of approving the accounts, the trustees have a reasonable expecta�on that the charitable company has adequate resources to con�nue in opera�onal existence for the foreseeable future. Thus the directors con�nue to adopt the going concern basis of accoun�ng in preparing the accounts.
2. Accoun�ng Policies
Income Recogni�on
Income is recognised when there is en�tlement to the funds, the receipt is probable and the amount can be measured reliably. Income is recognised in the year to which it relates and on an accruals basis. Legacies are included when the legacy is received or when the charity is no�fied of an impending distribu�on which can be quan�fied and receipt is probable, whichever is the earlier. Recoverable taxa�on is accounted for on an accruals basis.
Expenditure
Expenditure is accounted for on an accruals basis and allocated directly to the expenditure headings as far as prac�cally possible to reflect the ac�vi�es of the charity. Charitable ac�vi�es comprise direct expenditure including direct staff costs a�ributable to the ac�vity.
are recognised as an expense when they are due. Amounts not paid are shown in accruals in the balance sheet.
Fund Accoun�ng
imposed by the donor or are raised by the charity for specific restricted purposes.
Unrestricted funds are funds which are available for use at the discre�on of the trustees in furtherance of the general objects of the charity.
effec�ve manner avoiding the financial distor�ons and instabili�es which can be created by the irregular and unexpected receipt of significant legacies.
Cash and cash equivalents
Cash and cash equivalents include cash in hand and bank deposits.
Cri�cal accoun�ng es�mates and areas of judgement
In the view of the trustees in applying the accoun�ng policies adopted, no judgements were required that have a significant effect on the amounts recognised in the financial statements nor do any es�mates or assump�ons made carry a significant risk of material adjustment in the next financial year.
3. Dona�ons and legacies
| 3. Dona�ons and legacies | ||
|---|---|---|
| Year to | Year to | |
| 31 Mar 24 | 31 Mar 23 | |
| £ | £ | |
| Membership fees | 23,741 | 21,280 |
| Donations | 39,696 | 32,730 |
| Gift Aid | 7,937 | 5,947 |
| 71,374 | 59,957 | |
| Legacies | 14,513 | - |
| 85,887 | 59,957 |
Membership fees and general dona�ons have increased by almost 20% year on year.
4. Charitable Expenditure
| 4. Charitable Expenditure | ||
|---|---|---|
| Year to | Year to | |
| 31 Mar 24 | 31 Mar 23 | |
| £ | £ | |
| Staff costs | 76,047 | 62,130 |
| Funding of research project | 9,702 | - |
| Other costs | 21,540 | 22,183 |
| 107,289 | 84,313 |
5. Trustees
None of the trustees received any remunera�on during the year. There were trustee expenses of £125 during the year (nil in 2022/23).
6. Employees
The average number of employees on a full �me equivalent basis was 3.1 (2022/23: 2.5).
7. Debtors
| 7. Debtors | ||
|---|---|---|
| Year to | Year to | |
| 31 Mar 24 | 31 Mar 23 | |
| £ | £ | |
| PMR Paradox project with Leeds University | 17,330 | - |
| PMR Exercise Booklet with Keele University | 299 | - |
| Gift Aid accrual | 7,500 | 6,000 |
| Investment Interest | 4,200 | 2,283 |
| 29,329 | 8,283 |
8. Creditors: Amounts falling due within one year
| Independent Examiner's fee Social security and pensions costs Other creditors |
Year to Year to 31 Mar 24 31 Mar 23 £ £ 750 700 372 266 2,527 1,956 |
|---|---|
| 3,649 2,922 |
9. Restricted Funds
| 9. Restricted Funds | ||||
|---|---|---|---|---|
| Restricted Income | ||||
| 2023/24 | Balance at | Income | Expenditure | Balance at |
| 01 Apr 23 | 31 Mar 24 | |||
| £ | £ | £ | £ | |
| Stone King Legacy | 18,686 | - | - | 18,686 |
| James Tudor | 100 | - | 100 - |
- |
| Anonymous Grantor | 1,575 | - | 875 - |
700 |
| Wellcome Trust | 5,981 | - | - | 5,981 |
| Kent Community Foundation | 5,437 | - | 5,437 - |
- |
| Sussex Community Foundation | 2,680 | - | 2,680 - |
- |
| Sevenoaks Distric Council | 1,400 | - | 1,400 - |
- |
| Member Donation | 11,502 | - | 9,702 - |
1,800 |
| Amalgamation with North East PMRGCA | 10,000 | - | - | 10,000 |
| 57,361 | - | 20,194 - |
37,167 | |
| Restricted Income | ||||
| 2022/23 | Balance at | Income | Expenditure | Balance at |
| 01 Apr 22 | 31 Mar 23 | |||
£ |
£ | £ | £ | |
| Stone King Legacy | 21,186 | - | 2,500 - |
18,686 |
| James Tudor | - | 1,500 | 1,400 - |
100 |
| Anonymous Grantor | - | 1,575 | - | 1,575 |
| Garfield Weston | 1,029 | - | 1,029 - |
- |
| Wellcome Trust | 5,981 | - | - | 5,981 |
| Kent Community Foundation | 5,025 | 4,857 | 4,445 - |
5,437 |
| SussexCommunity Foundation | 4,726 | - | 2,046 - |
2,680 |
| Tesco | 510 | - | 510 - |
- |
| Sevenoaks Distric Council | - | 1,400 | - | 1,400 |
| Member Donation | 11,502 | - | - | 11,502 |
| Amalgamation with North East PMRGCA | 10,000 | - | - | 10,000 |
| 59,959 | 9,332 | 11,930 - |
57,361 | |
| Purpose of each Fund | ||||
| Stone King Legacy | To be spent on new development | |||
| James Tudor Foundation | To fund the training and support for the member helpline | |||
| Anonymous Grantor | To fund the training and support for the member helpline | |||
| Garfield Weston | Information packs, marketing and PR | |||
| Wellcome Trust | Roadshows outside London | |||
| Kent Community Foundation | To fund a part-time co-ordinator of the Kent support groups | |||
| Sussex Community Foundation | To fund a part-time co-ordinator of the Sussex support groups | |||
| Tesco | To fund a part-time co-ordinator of the Kent support groups | |||
| Sevenoaks Distric Council | To fund a part-time co-ordinator of the Kent support groups | |||
| Member Donation | Funding for a research project | |||
| Amalgamation with North East PMRGCA | To fund GP awareness of PMR and GCA in the North East |
10. Legacies Reserve
| 10. Legacies Reserve | ||
|---|---|---|
| Year to | Year to | |
| 31 Mar 24 | 31 Mar 23 | |
| £ | £ | |
| Opening Balance | 112,699 | 128,799 |
| Additions in year | 6,513 | - |
| Transferred to General Reserve | 14,088 - |
16,100 - |
| Closing Balance | 105,124 | 112,699 |
The Legacies Reserve was established in 2020/21 following the receipt of a large legacy in relation to the size of the existing reserves. The amounts transferred to reserves are in accordance with the policy established when the reserve was created.
11. Reserves Summary
| 11. Reserves Summary | ||
|---|---|---|
| Year to | Year to | |
| 31 Mar 24 | 31 Mar 23 | |
| £ | £ | |
| Restricted Income | 37,167 | 57,361 |
| Legacies Reserve | 105,124 | 112,699 |
| General Reserve | 73,334 | 69,313 |
| Total Reserves | 215,625 | 239,373 |
12. Related party transactions
There were no related party transactions during the year.
ACKNOWLEDGEMENTS
The charity depends on the generosity and support of volunteers. We acknowledge and thank wholeheartedly all those who make the work of the charity possible. We are also extremely grateful to the people who have given their time and e�ort to raise funds for the charity and to all who have made donations or attended our events.
PMRGCAuk is a small charity with limited resources. Many of those seeking information and support from us do not realise that we are a very small team working remotely. We work hard to spend every penny of our fund wisely.
Appendix 1
Reference and administrative details of the charity
Name of Charity: Polymyalgia Rheumatica and Giant Cell Arteritis UK (PMRGCAuk) Charity
Registration No: 1128723
Company Registration No: 6763889 Registered Address: 10 Coldbath Square, London, EC1R 5HL O�ice/Correspondence Address: BM PMRGCAuk, London, WC1N 3XX Bank Details: HSBC, 13 Parliament Street, York
Trustee/Directors: Humphrey Hodgson (Chair), Janice Maddock (Deputy Chair), Geo� Holroyd (Treasurer), Penny Denby (until September 2023), Dr Vanessa Quick, Sara Muller (until February 2024), Christine Young (until September 2023), Wendy Morrison, Fiona Johnson, Gail Booth and
Independent Examiner: Katherine Gamage from Gamages Accountancy President: Professor Bhaskar Dasgupta
Patrons: Lord Robin Butler, Lady Wendy Levene, Dr Sarah Mackie, Dorothy Byrne Sta�: Candy Horsbrugh (Director until September 2023), Sophie Boyce (Director from August 2023), Fran Benson (Membership Secretary & Assistant Director), Neelam Russell (Kent Regional Organiser until March 2024 and National Support Group Manager until September 2023), Charon Balarabe (Administrative Assistant) and Lucas Coutin (Northern Outreach Lead).
About the charity
PMRGCAuk is the national charity for those with Polymyalgia Rheumatica and Giant Cell Arteritis. We were formed in 2008 by the ‘PMR Fighters’, a group of patients who came together determined to find out more about these little-known conditions and create a national network of support so that no one need face these diseases alone.
With the support of many wonderful volunteers, PMRGCAuk now supports over 3000 people a year through our national network of support groups, our telephone helpline, and our online forum. We have become a go-to source of information through our website. Reaching out to the medical research community, we have been instrumental in helping to shape and perform research, have lobbied for new treatments, and raised awareness on the front line of diagnosis – the GP surgery.
We campaign to raise awareness amongst the general public and healthcare professionals so the correct diagnosis and treatment can be rapidly reached by GPs and other healthcare professionals.
With an urgent need for support and information, the charity was set up over 10 years ago by a patient group – The PMR fighters – and remains governed today by Trustees the majority of whom live with one of the conditions, as well as being shaped by a membership of patients with either PMR or GCA. The charity ensures those diagnosed never need feel alone or unsupported. Empowered with information, those living with the conditions are better able to have informed discussions with their doctors and health professionals and feel more in control of their destiny.
The charity’s objects are:
a) To advance the education of the public through the collection, assimilation and recording of information and data relating to polymyalgia rheumatica and giant cell arteritis by the provision, establishment and maintenance of an educational website, and a network of support groups. b) To preserve and protect good health by the promotion of research into polymyalgia rheumatica and giant cell arteritis and the dissemination of the useful results thereof for the benefit of the public.
The charity’s activities
We provide information and support to people with PMR and GCA
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Support a national network of support groups.
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Provide a telephone helpline run by volunteers with experience of the conditions.
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Maintain an online forum for peer support.
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Produce a free information pack to people newly diagnosed with PMR and GCA
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Organise an annual members’ day with guest speakers and facilitated discussions.
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Publish a members’ magazine three times per year & send regular email and letter updates.
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Maintain and up to date website and improved social media.
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Distribute information to rheumatology departments and other relevant locations. We raise awareness within the public domain, medical profession and government.
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Conduct national press and media work to increase public awareness.
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Speak to groups of people over 50 and those who work with them.
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Attend meetings with health professionals and NHS England.
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Advocate for fast and e�ective diagnosis and treatment to prevent sight loss resulting from undiagnosed GCA.
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We support and promote research into PMR and GCA.
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Provide patient representation on international working groups, such as those to develop new guidelines for the management of PMR and GCA.
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Become actively involved in research projects undertaken by other organisations, primarily through patient representation.
For a small charity, we are proud of our impact, helping thousands of individuals each year through the services we provide, online, on the telephone and through our national network of support groups. Our work supporting the medical and research community through vital patient representation has also helped to drive change in diagnosis and treatment including the release of new international clinical guidelines for GCA, released in January 2020, developed to standardise diagnosis and treatment around the world.
Since forming, demand for the services of the charity has grown considerably and we are now supporting over 5,000+ people a year through our various services, run by a small core sta� team supporting a network of over 50 volunteers. The need for our work is clear to us, highlighted by our growth in membership; the growth of our national network of support groups and the increase in those accessing our information, as well as a wealth of positive stories from those using our services.
Appendix 2
Part A – Report from support groups
Not all groups choose to provide a report.
Dorset: We are a new group which started in March 2024 covering the Dorset area. We are growing slowly, with new people arriving each month. The overwhelming feeling for new members seems to be relief at realising they are not alone and isolated. This rare disease is li�le understood. Over the next few months we will be welcoming Dr M Khurshid Consultant Rheumatologist from Poole Hospital who fully supports our group. We are planning to invite other specialists from the Osteoporosis Society, a die��an, and will be inves�ga�ng alterna�ve ways of dealing with fa�gue and sleep problems.
Havant: The Havant (Portsmouth) support group has been up and running since May 2023 and our membership is now at 37, although not all members a�end at once! We have been superbly supported by the Rheumatology Team of our local hospital. Their senior nurse has been providing ques�on and answer sessions and arranging visits from a wide range of speakers on a variety of topics related to PMR and GCA. These include nutri�on, graded exercise, bone health and sleep. Two of the rheumatology consultants have also delivered sessions on current medical research and steroids and the adrenal glands. We are extremely grateful for the con�nued ac�ve support from the Rheumatology Team.
Brighton: The Brighton group is a small but very suppor�ve group who meet face to face with a Zoom op�on. We regularly have new members who find the informa�on from fellow PMRGCA sufferers really helpful, especially in answering their ques�ons. Equally we are very happy when members leave because they no longer need us because they are now be�er.
Plymouth: Plymouth Group had several meetups during the year, with li�le ac�vity during midwinter and mid-summer months. We met at the Discovery Café on selected Tuesday mornings at 11am. The café adjoins the Central Methodist Hall in Eastlake Street, Plymouth – well-placed for city centre shopping and lunches available. We’re open for sugges�ons and would like to get a speaker at some stage, and perhaps join with a neighbouring group on occasions.
Cumbria: The group is now well established in the sense of regular mee�ngs (approx. every 6 – 8 weeks) held in various café venues across the county but se�ling now mainly in Kendal and Sedbergh. They are a café and chat style of exchange of informa�on and support. A�endance varies from three to eight. There is a mix of men and women and ages range from 50s to 80s. Not everyone comes to every mee�ng – it’s a drop in arrangement to suit individuals. Mostly it’s about PMR but a few have GCA and one or two people have both. Most of our members now find out about the group online e.g. via the charity’s website though we have had one referral via a GP. People come from a wide area e.g. Carlisle, Richmond, Morecambe. Many are interested because they have been newly diagnosed and want to learn more about the condi�on. The main topics are about symptoms, GP/specialist diagnosis, steroid tapering, approaches to managing the illness and increasingly long-term effects of the condi�on and medica�ons. Experiences vary from very good support by health care professionals to poor monitoring and feelings of abandonment by medics. We hope to con�nue in the coming year along similar lines and always aim to offer support and welcome to anyone who a�ends.
Isle of Wight: The Isle of Wight support group started on May 8[th] with 11 people present. We all agreed we would like the group to con�nue, and we realised that considering we all live under one healthcare system everybody’s experiences have been very different. We have a range of
experiences, people who have had PMR/GCA for eight or nine years, people who have only been diagnosed in the last couple of months and everyone in between. What has been great is being able to share experiences of medica�on for people who may be about to experience it. We meet the first Wednesday evening of the month, we have plans for a consultant rheumatologist, a die�cian and an ophthalmologist to come and speak with the group.
Whitstable: Whitstable has become such a great support group – our a�endance ranges from seven to 17 at the mee�ngs. The group made a unanimous decision last year to hire a private room each month. We are very lucky with our venue as there are many available, all with Wi-Fi. This gives us more privacy and has made a significant difference to our discussions, just last month we had a recording on Mood and Wellbeing with Steroids which really opened up a topic we have not really covered before. We o�en have a seated exercise session and every month there is always Chat Round the Room where everyone joins in and benefits. Back in March we watched the recording based on our new exercise booklet – a great mee�ng ably supported by Neelam who we bade farewell to and presented her with something for her garden. We’ve been able to distribute 20 of the booklets and have sent a dona�on to HO for them. We are hoping for more guest speakers and, if all that fails, we will run a quiz! One of our members has offered to set up a WhatsApp group to help us stay in touch. What is so good is that we always end up having a laugh about something, such good medicine.
Maidstone: Maidstone support group has con�nued to meet monthly, welcoming quite a few new people to our social group this year. Mee�ngs are fairly informal, sharing experiences and offering mutual support. We have discussed a range of different topics relevant for pa�ents, using informa�on and resources from the PMRGCAuk website, and from other professional chari�es. In July 2023, we enjoyed a home fire safety talk from Kent Fire and Rescue Service, and in the spring we looked at the charity’s new exercise booklet, following its launch in January 2024. Members have also par�cipated in some of the webinars which have been organised by the charity throughout the year, as well as the regular online support group.
Yorkshire: This year saw our return to John Lewis Community Hub in Leeds on 12th June. Un�l then we did not have anyone who was able to lead the mee�ng. It was not as well a�ended as before and only four people came. We have not given up yet as I am sure there are a lot of people in Leeds with PMR/GCA who would benefit from the support group. We will try a few more �mes to see if the venue and loca�on are the issue or there are other reasons people cannot a�end. Yorkshire is a large area to cover; we support four loca�ons: Ilkley, Leeds, Sheffield and York. This year we have held 10 mee�ngs and 10 Zoom sessions. The group was founded in Ilkley in the summer of 2017 by two members who met at the charity’s research roadshow in Leeds in March of that year. It grew to cover more of Yorkshire for people in outlying areas. We also have Zoom sessions for those who can’t travel. Anyone is welcome to a�end regardless of postcode. The mindfulness session this year on Zoom was well a�ended and enjoyed by all those who joined in. There is an average of six to 10 people who a�end Ilkley and York. We have about 4-6 who come to Sheffield. The mee�ngs are informal, held in a café or community room. The aim is to provide a less structured approach for the group to put them at ease, enabling conversa�on and a ques�on-and-answer session. The Northern Outreach Lead, appointed in October, is based in Leeds and will help broaden our appeal to reach more people. We con�nue to forge �es with local rheumatologists at Leeds Teaching Hospital, ge�ng involved in research programmes and benefi�ng from their webinars. We look forward to working together in the future. The group has a good sense of community and provide support for each other in many ways that might not be PMRGCA related. They share ideas on cra�s, hobbies, health issues and other interests which is a good way to take your mind off the daily struggle of living
Luton & St Albans: Our group was formed following a pa�ent event held in December 2022 by Dr Quick at the Luton and Dunstable Hospital. We first met as a support group at 11.00 on Wednesday 1st February 2023 at The Rose Garden Cafe at the Her�ordshire Garden Centre in Redbourn and six people a�ended. It was agreed that our first venue was quite small therefore we looked for a venue that could accommodate a larger group so our second mee�ng was held at The Stockwood Park Discovery Centre Cafe in Luton. This venue proved popular and we then met every three months here. Following two newly diagnosed members joining us, the group decided it may be beneficial to meet more frequently and since May 15th of this year we have met every two months. We now have 12 people on our mailing list.
Sevenoaks, Tonbridge & Tunbridge Wells: We meet in the usual rhythm (every two months) but are currently looking for a new mee�ng place.
Chichester: Our group of usually 8–10 people is going very well and everyone says what a success and help our monthly mee�ngs are to them. Even though we all have PMR/GCA (with the excep�on of Val our tea lady who s�ll a�ends although it was her late husband who had the condi�on) we all find so much to laugh about and humorous stories to tell that everyone enjoys and looks forward to our mee�ngs. They all go away with a smile on their face which is a pleasure to see.
Worthing: The group is growing slowly – we get a steady trickle of new members almost balanced out by members leaving because they’re finally off steroids and in remission, which is good news for all of us, proving it can be done. It’s a pre�y sociable group too: we held a Christmas party which went so well that we’re holding a tea party in the summer.
Cheshire: The Cheshire group was established in September 2023 when one of our new members found the nearest support groups were in Shropshire, Cumbria or Yorkshire. It is a rela�vely small but growing and thriving group, a�rac�ng members from as far apart as Oldham, The Wirral, Derbyshire, Stoke and of course Cheshire. New members are always welcome. Due to this diversity the group alterna�ves its mee�ngs between face-to-face mee�ngs and online. The group is informal and provides, friendship, shared experiences and support. It is a privilege to lead this group. I’ve met a wonderful, interes�ng group of people and feel like it really makes a difference. One new member sent me a message a�er her first mee�ng ‘I just want to let you know how important that meet up was for me and thank you again for arranging. Listening to R and ge�ng the book H recommended encouraged me to act on my symptoms and I just had an ultrasound which confirmed GCA.’ Feedback like this makes it worthwhile and demonstrates the power of group mee�ngs.
Barnet : A�er a break of several years – last mee�ng February 2020 – we restarted this year with a mee�ng in March 2024. Seven a�ended and everyone had a chance to tell their story. A final few minutes of general discussion always produces fresh ideas which the group can add to their own knowledge of PMR – pill spli�ers, web sites and experiences with fast and slow reduc�ons to name a few.
Orpington: In 2012, following a meet up organised through HealthUnlocked I met with two people from Kent in a Dunelm Mills coffee shop. Eight HU members then met for lunch in a pub at Chelsfield. We have moved over the years from a church hall in Chelsfield, my house, a room at Community Links in Bromley, a local pub and then we se�led at St Paul’s Church where we have been mee�ng now for at least six years.
Welwyn Garden City: I live in Welwyn Garden City and a�er being diagnosed with PMR in 2017 and subsequently GCA in 2018, I thought it was �me I started a support group in my area as the nearest one was too far for me to travel at the �me. The PMRGCAuk website had been especially useful in
support group. The Welwyn Garden City support group’s first mee�ng took place on 5 September 2019 when Janice Maddock, Trustee, kindly joined us to explain the work of PMRGCAuk. The face-to-face bi-monthly mee�ngs con�nued in a hired local church hall un�l March 2020 when it became apparent that these mee�ngs were no longer feasible as Covid began to take its toll on the popula�on, so we reverted to monthly Zoom mee�ngs. I originally recorded 15 members, but many of those decided they either could not manage Zoom, or it just was not convenient, even though I offered to help them get to grips with the technology. The group subsequently dwindled but we con�nue to hold the Zoom mee�ngs for a select few who cannot, for various reasons, travel far or leave home. The offer s�ll stands for anyone in another part of the country to join in these sessions if they do not have the facility locally. The membership has gradually grown again, and there was a consensus for face-to-face mee�ngs to start up again. In November 2023 I chose a more central venue in a café on the first floor of the local cultural centre in Welwyn Garden City where there is a li� and an adjacent car park. We can sit separately from other members of the public quite comfortably, purchase something to drink or eat and chat about anything that can help members understand the various issues that arise from PMR or GCA. The common themes are the difficulty with tapering prednisolone and the paucity of GP or consultant appointments. We have had a steady year to date. The dates of the mee�ngs are confirmed in advance on the local support groups’ page of the PMRGCAuk web site in case there are any changes.
Pinner and Ruislip: The Pinner and Ruislip Group continues to support a steady number (approx 60 +) of people with PMR and GCA both online and face to face. The group has had a good year with a few speakers and the added benefit of Wendy Caines joining Janice as joint Group Organiser.
Part B – Report from PMR-GCA Scotland
SCOTLAND REPORT FOR UK CHARITY’S ACCOUNTS 2024
2023 saw us return to normal ac�vity a�er an extended period when we seemed to be wholly at the mercy of Covid-19. Our support groups have revived regular mee�ngs and they all have a full schedule in place for 2024. Membership stands at 331 members which is a sa�sfying increase from 311 last year.
Supporting people affected by PMR and GCA is a primary aim of the charity and this is best done through personal contact. We achieve this through our support groups and the helpline which both involve listening to problems, discussing them, and offering advice and reassurance where appropriate. We cannot give medical advice but the breadth of experience which can be tapped into can often help patients to engage more fully with their health professionals. The website is another fulltime support that we offer and even it has a personal touch. The sections with medical information, patients’ stories and the FAQ section all have a distinctly personal feel which makes them very usable. Our other personal interaction with members is through our AGM which is held online.
The other main objective of the charity is to support and promote treatment and research activities into PMR and GCA. This is done in a variety of ways including participation in committees and organisations involved with delivery of health services (governmental and non-governmental) and also participation in committees and projects involving themselves with research of various types. A list of such activities gives a flavour of these involvements, but doesn’t fully convey the time and effort which is expended on behalf of the charity. In this regard I must make specific mention of Lorna Neill who accounts for almost all of this work. She does enormous amounts for the benefit of patients worldwide and is unstinting in sharing her knowledge with our own membership. We had hoped to revive our practice of offering financial support to projects that meet our objectives but with no reportable outcome at this time – we will continue to pursue this aim.
About half of our members maintain contact with one of our local support groups. We have five groups operating currently which meet regularly in Aberdeen, Dundee, Glasgow, Edinburgh, and Inverness. For some members it is just not possible to attend meetings whether that be due to geography, employment, health issues or child-care commitments. Our online Zoom meetings have allowed some participation for such members and we plan to continue this activity on a more regular basis in the future.
All the work mentioned in this report would not be possible without the efforts of all our members to some degree or other. I must, however, give special thanks to our trustees, to our helpline volunteers, and to the organisers of our support groups. The trustees are extremely grateful to all those individuals and trusts who support the charity financially.