PMR Polymyalgia Rheumatica & Giant Cell Arteritis UK Accounts and Annual Report 2024-2025
Message from Chair of Trustees
The core ac�vi�es of the Charity are suppor�ng people with PMR and GCA, raising awareness, lobbying for improved services, and research. I think we can congratulate ourselves on con�nued ac�vity in all these areas – thanks to our members, our volunteers, our partners and our staff.
As this report shows, our support systems thrive with a number of new support groups being formed, importantly some in the north of England, although we s�ll remain ‘bo�omheavy’ in the south and west. Our helpline is in con�nuous demand, and we interact with over 4000 people via Health Unlocked; we owe a huge debt to those who man the telephones and who oversee the on-line conversa�ons.
Our website is con�nually updated, and allows access to our series of webinars, which we know are hugely appreciated. Some topics unfortunately never �re, such as the problems of prednisolone therapy, but we are delighted to have been asked to contribute to the NICE (Na�onal Ins�tute of Health Care Excellence) review of a new therapy for GCA. We have also engaged with the NHS England’s ‘Musculoskeletal Czar’, though we worry that subsequent decisions to dismantle that organisa�on may make na�onal efforts to improve services more difficult to achieve. Our ‘Freedom of Informa�on’ request to the Department of Health yielded important informa�on on the patchiness of rapid diagnos�c facili�es for GCA.
In research, together with Sarah Mackie in Leeds (one of our patrons and a huge supporter) this year saw the end of the informa�on-gathering phase of the research project funded by NIHR (the Na�onal Ins�tute of Health Services Research) on the PMR paradox, inves�ga�ng why PMR is less frequently recognised in the North of England. Next year should see the results published. Importantly we have also established ourselves as the go-to for consulta�on when academic researchers apply for grant funding in PMR and GCA.
Kate Gilbert, one of our founders, has agreed to update – it will be the third edi�on – her much appreciated book on Living with PMR.
Sophie Boyce se�led in rapidly and has been extremely effec�ve; and Fran Benson not only creates Newswire, but made a huge contribu�on by ini�a�ng the ‘marathon in a Month’ fundraising campaign, which has succeeded not only financially but also by crea�ng new friendships and interac�ons. Personally I cannot thank them, and our administrator Charon Baralabe, enough.
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 took the decision to raise our membership fee in October 2024, from £15 to £22. It had been a number of years since we last raised our fee, in which �me costs have risen steeply. We are very apprecia�ve of everyone that has supported us in this increase.
By the end of March 2025 we had 1800 members. This includes pa�ent, friend and professional members.
Members’ Day
Our 2024 Members’ Day and AGM took place online again. Our speakers this year were Dr Chris�an Selinger and Professor Emma Clark.
Dr Chris�an Selinger spoke about the case for and against stomach protec�on while on prednisolone. His talk covered proton pump inhibitors such as omeprazole and lansoprazole, why they might be used, their benefits and the poten�al risks.
Professor Emma Clark then spoke about the case for and against bone protec�on while on prednisolone. Her talk covered the risk factors for broken bones, including having a diagnosis of PMR or GCA, being on steroids, inflamma�on, and age, and how bisphosphonates, calcium and vitamin D can help to reduce the risk of breaking a bone.
Both talks were extremely well received and our thanks to Vanessa Quick for compering the talks.
PMRGCAuk Week 2024
We hosted two professional webinars for PMRGCAuk week in June 2024, and also presented a charity spotlight webinar. We had more than 320 members and guests to our PMRGCAuk week webinars.
Consultant Physiotherapist Will Gregory launched our inaugural Marathon in a Month with his webinar about improving outcomes through exercise and ac�vity. He spoke about the role of a physiotherapist, as well as the different benefits of exercise and how to maximise these.
Dr Sarah Mackie talked about the hidden complexi�es of PMR and GCA and talked through five approaches people can take to help themselves through.
trustees to talk about the different areas of work the charity is involved with, and the different ways we provide support.
Thank you to all our members who got involved with fundraising and awareness raising efforts during PMRGCAuk week.
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 currently working consists of four volunteers Stephanie Beer, 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. During the past year Trish Galli has re�red from working on the helpline and Monica Alderton is currently having a break. This means that the remaining four volunteers are having to do significantly more shi�s on the helpline and there is an urgent need for some new volunteers to enable the helpline to keep running.
The Helpline team has con�nued to work with trainer Alice Hanscomb (thanks to grant support) and this has enabled the volunteer team to develop their skills and to improve their prac�ce.
The Helpline volunteers spoke to 384 callers from April 2024 to March 2025 an increase of 30 from last year, with slightly fewer calls received in December and February than the rest of the year.
Sta�s�cs
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70% of callers had PMR; 20% GCA; and 10% had both. This is a very similar spread to 2022/2023.
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The average age of callers was 72 years old last year the average age of callers was 76.
-
81% of callers were female; 19% male this is a decrease of 5% from last year.
-
58% of callers were newly or recently diagnosed; 39% had been diagnosed between 1-4 years and 8% had been diagnosed over 5 years. 3% of callers did not disclose how long they had been diagnosed or were calling on behalf of someone else. This is a significant increase in newly diagnosed pa�ents calling the helpline which may reflect health prac��oners having insufficient �me to talk to newly diagnosed pa�ents.
-
than once (2% did not say). This is like last year.
-
90% 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 8% about steroid sparing drugs.
-
73% 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 58% last year.
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reduc�on of 3% from last year.
25% of callers are recorded as being members of PMRGCAuk, a decrease from 28% in 2023/2024.
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.
community rooms, with some hiring a dedicated space for each of their mee�ngs. We also have a growing number of online groups. Penny Denby’s dedicated online group has been joined by online groups run by a number of our regional GOs. These groups welcome those from outside of their areas who would otherwise find it hard to a�end a mee�ng.
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. Charon Balarabe has been suppor�ng the group organisers this year, making sure posters are sent out and details updated on the website. We hold regular mee�ng for our group organisers to a�end, which gives everyone a chance to share how things are going, troubleshoot challenging situa�ons, and keep up to date with charity news.
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. We share regular group news in NewsWire, which is published three �mes a year, and we try to feature a different group organiser in every edi�on to share how all of our groups work.
PMRGCAuk Informa�on Packs
Our informa�on packs con�nue to be a popular resource, with the total number of packs requested in 2024-2025 represen�ng a 9% increase on 2024-2024’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
2024/2025 Total informa�on packs requested: 1731
Hard copy: 425 Digital copy: 1306
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 2025, we had 4601 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.
In March 2025, there were 352 posts (threads) made on the forum, invi�ng a total of 6205 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.
MARATHON IN A MONTH
In July 2024 we introduced a new campaign called Marathon in a Month. As well as being a great fundraising and awareness spreading opportunity, it also saw our members benefit from increased exercise and ac�vity and, for those that took part in groups, allowed them to build and grow friendships with other members.
The event raised a phenomenal £11,000 for the charity and we received so much posi�ve feedback on the benefits members felt from taking part.
Research and awareness
In May 2024, we were invited to the launch of Charity President Professor Bhaskar Dasgupta and Dr Chris�an Dejaco’s study mee�ng, The GCA-PMR Spectrum; Moving on A�er 65 years. The day was primarily aimed at consultants to consider what is now considered best prac�ce for diagnosis and treatment of PMR, GCA and LVV, but charity members were also invited to a�end the event to share their viewpoints and experiences.
Since the mee�ng, Professor Dasgupta and others have gone on to carry out a DELPHI study on their proposals to reach a consensus on how these condi�ons should be approached going forward.
March 2025 saw the comple�on of our research project The Polymyalgia Paradox: Addressing north-south inequi�es in polymyalgia rheuma�ca using grassroots community connectors in a deprived urban area. The project involved Dr Sarah Mackie from University of Leeds, Dr Sarah Muller from Keele University, Dr Hanif Ismail from Leeds Teaching Hospitals NHS Trust, wider colleagues at all three ins�tutes, and Lucas Cou�n who was employed as the charity’s Northern Outreach Lead for the Project.
The project aimed to iden�fy barriers to diagnosis, care and support faced by people with PMR from under-served communi�es and create a roadmap for overcoming these barriers.
One of the key outputs from the project was the videos Lucas created with our members, sharing their varied experiences with PMR and GCA through diagnosis, treatment and recovery. These have already been used to aid clinician educa�on and awareness raising and give a rich insight into people’s experiences with these condi�ons.
dissemina�on, conclusions and future plans will be made public and shared with charity members once the final document has been signed off with the NIHR.
Lucas’s role with the charity came to an end in line with the comple�on of the project and since leaving the charity he has moved to Denmark where he will be studying for his Masters degree in Nordic Town Planning.
PMRGCA
Annual Report and Accounts for 2024/25
Financial Review
This year we recorded a surplus on all activities of £6,620 which is an improvement over last year which saw a deficit of £23,748.
Income
Income for the year was £143,688, a 23% increase over last year’s total of £116,645. Our main source of income is the subscriptions and donations of the charity’s members and supporters which totalled £93,532, an increase of 27% over the previous year.
project with Leeds University, £9,030 of interest on the investment of our surplus funds and £2,036 from other activities.
Expenditure
Expenditure for the year was £137,068 of which the major cost was salaries totalling £108,468. The only expenditure on restricted funds was £700 for the helpline volunteer training programme.
Balance Sheet
As a result of the surplus for the year total funds increased to £222,245. The trustees will continue 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 £9,055, Restricted Reserves increased by £1,085 and the General Reserve increased by £14,590 to £85,582 and remains consistent with the reserves policy to maintain at least three to six months of operating costs in line with Charity Commission guidance.
Reserves Policy
Charities are required to have a reserves policy to show they have su�icient reserves to continue to meet their obligations 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
The Trustees have resolved that the General Reserve should be su�icient to meet three to six months of the charity’s ongoing operating costs.
- Restricted Reserves
During the year the policy of allocating a proportion of the interest earned on surplus funds to restricted funds was introduced. This was applied retrospectively to the years 2022/23 and 2023/24. Prior to 2022/23 the amounts of interest earned were immaterial.
- Legacies Reserve
is to enable the Trustees to manage large unrestricted legacies in an e�icient and e�ective manner to best promote the Charity’s objectives 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 distortions and instabilities 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:
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General Reserve and any excess over £5,000 will be added to the Legacies Reserve.
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legacy previously added to the Legacies Reserve will be released to the General Reserve.
This policy was introduced with e�ect from 01 April 2020.
Independent Examiner's Report CHARITY COMMISSION FOR ENGLAND AND WALES Independent examinerfs report on the accounts Section A Independent Examinerfs Report Report to the trustees/ members of Polymyalgia Rheumatica and Giant Cell Arteritis UK On accounts for the year ended 31 March 2025 Charity no (rfary) 1128723 Set out on pages I report to the trustees on my examination of the accounts of the above charity ("the Trusy,) for the year ended 31/03/2025. Responsibilities and basis of report As the charity's trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 ("the Acff ). I report in respert of my examination of the Trusys accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.
Independent I have completed my examination. I confirm that no material matters have come examiner's statement to my attention in connection with the examination (other than that disclosed below.) which gives me cause to believe that in, any material respectr. the accounting records were not kept in accordance with section 130 of the Charities Act- or the accounts did not accord with the accounting records: or the accounts did not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a 'true and fairf view which is not a matter considered as part of an independent examination. I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understsnding of the accounts to be reached. Signed: Date: 6th August 2025 Name: Katherine Gamage ACMA Relevant professional qualification(s) or body (rf any): Associate Member of the Chartered Institute of manageffnt Accountants (ACMA, CGMA). Address: 8 Pemscott Close Alvescot Oxfordshire, OX18 2QE Section-B Disclosure Only complete if the examiner needs to highlight matetial matters of cOnM (see CC32, Independent examination of charity accounts: directions and guidance for examiners).
Give here brief details of any items that the examiner wishes to disclose .
Statement of Flnanclal Activltles PMRGCAuk Charity Trk> 112872J 67638Bg Amual accounts for t riod Olm2024 3110J12025 Section A Statement of financial activities (including summary income and expenditure account) Restrb•d UnrMtrtl•d nd Prk< y&v ttr¥ty nd¥ nds Tdal In¢omln9 r•#ou•S IP4ot• 3> F01 F02 F03 F04 FOS $0? sol 799 8.112 7.245 1.785 ro R•5our¢•¥ •xp•nthd INol• 41 W•ndiiur• M.. 141.3 1.785 143 688 116.645 27.862 97.567 97.419 3836 3,836 137(bg 5,2A2 140.393 700 N•t In¢om•ll•xp•nthr•l b•foTr t•x forth• r•portlng p•rlod 23.748 N•t In¢om•ll•xp•n¢Mwr•l tsx b• Inv•stment gall1(10$81 Net Incomellexpendlur•l Exiraoydlnary ithms Tr•nsl•rs b••+n funds other recounlsed galnslllo88•81: 23.748 N•tmovwmertln fvn¢l• R8conclll•Won orrunds.. To1al szj 176.116 39.5)9 215625 239.373
Balance Sheet
| Guidance Notes | Unrestricted funds |
Restricted income funds |
Endowment funds |
Total this year |
Total last year |
|
|---|---|---|---|---|---|---|
| £ | £ | £ | year £ |
year £ |
||
| Fixed assets | F01 | F02 | F03 | F04 | F05 | |
| Intangible assets | B01 | - - - - | - - - - | - - - - | - - - - | - |
| Tangible assets | B02 | - - - - | - - - - | - - - - | - - - - | - |
| Heritage assets | B03 | - - - - | - - - - | - - - - | - - - - | - |
| Investments | B04 | - - - - | - - - - | - - - - | - - - - | - |
| Total fixed assets | B05 | - - - | - - - | - - - | - | - |
| Current assets | ||||||
| Stocks | B06 | - - - - | - - - - | - - - - | - - - - | - |
| Debtors (Note 7) | B07 | 20,895 - - 20 | 895 - - 20 | 895 - - 20 | 895 - - 20,895 | 29,329 |
| Investments | B08 | 143,462 | 32,060 - 175 | 060 - 175 | 060 - 175,522 | 166,779 |
| Cash at bank and in hand | B09 | 19,197 | 8,534 - | 534 - | 27,731 | 23,166 |
| Total current assets | B10 | 183,554 40 | 554 40,594 - | 594 - | 224,148 | 219,274 |
| Creditors: amounts falling due within one year (Note 8) |
B11 | 1,903- - 1 | - - 1 | - - 1 | - - 1,903 | 3,649 |
| ~~ | ~~ | ~~ | ~~ | ~~ | ~~ | |
| Net current assets/(liabilities) | B12 ~~ |
~~ | 181,651 40 ~~ |
~~ | 651 40,594 - 222 ~~ |
~~ |
| ~~ | ~~ ~~ |
~~ | ~~ | ~~ ~~ |
~~ | |
| Total assets less current liabilities | B13 ~~ |
~~ | 181,651 40 ~~ |
~~ | 651 40,594 ~~ |
~~ |
| ~~ | ~~ | ~~ | ~~ | ~~ | ~~ | |
| Creditors: amounts falling due after one year |
B14 | - - - - | - - - - | - - - - | - - - - | - |
| Provisions for liabilities | B15 | - - - - | - - - - | - - - - | - - - - | - |
| Total net assets or liabilities | B16 | 181,651 40 | 651 40,594 - | 594 - | 222,245 | 215,625 |
| Funds of the Charity | ||||||
| Endowment funds | B17 | - | - 40,594 - 181,651 - |
- | ||
| Restricted income funds (Note 9) | B18 | 40,594 | 39,509 | |||
| (Note 9) Unrestricted funds (Note 11) |
B19 | 181,651 | - 181,651 | 176,116 | ||
| Revaluation reserve | B20 | |||||
| Total funds | B21 | 181,651 40 | 651 40,594 - 222 | 594 - 222 | 594 - 222,245 | 215,625 |
| Signed by two trustees on behalf of all the trustees |
Signature | Print Name | Date of approval dd/mm/yyyy |
|||
| ~~pike~~ | ~~Sc~~ ~~pike~~ |
Fiona Johnson ~~Sc~~ ~~[fr~~ |
~~Sc~~ ~~[fr~~ |
|||
| ~~pike~~ | ~~Sc~~ ~~pike~~ a |
Geoff Holroyd ~~Sc~~ ~~[fr~~ |
~~Sc~~ ~~[fr~~ |
Notes to the Financial Statements
1. Basis of Preparation
The financial statements have been prepared on a going concern basis under the historical cost convention.
The financial statements have been prepared in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102). The Charity is a public benefit entity for the purposes of FRS 102 and therefore the Charity also prepares its financial statements in accordance with the Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (The FRS 102 Charities SORP) and the Charities Act 2011.
The financial statements are prepared in sterling, which is the functional currency of the charity. Monetary amounts in these financial statements are rounded to the nearest pound.
Going concern
At the time of the approving the accounts, the trustees have a reasonable expectation that the charitable company has adequate resources to continue in operational existence for the foreseeable future. Thus the Directors continue to adopt the going concern basis of accounting in preparing the accounts.
2. Accounting Policies
Income Recognition
Income is recognised when there is entitlement 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 notified of an impending distribution which can be quantified and receipt is probable, whichever is the earlier. Recoverable taxation 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 practically possible to reflect the activities of the charity. Charitable activities comprise direct expenditure including direct staff costs attributable to the activity.
Employee benefits - Pensions
The Company operates a defined contribution plan for its employees. These contributions are recognised as an expense when they are due. Amounts not paid are shown in accruals in the balance sheet.
Fund Accounting
Restricted funds are funds which are to be used in accordance with specific restrictions 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 discretion of the trustees in furtherance of the general objects of the charity.
The Legacies Fund is to enable the Trustees to manage large legacies in an efficient and effective manner avoiding the financial distortions and instabilities 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.
Critical accounting estimates and areas of judgement
In the view of the trustees in applying the accounting policies adopted, no judgements were required that have a significant effect on the amounts recognised in the financial statements nor do any estimates or assumptions made carry a significant risk of material adjustment in the next financial year.
3. Donations and legacies
| 3. Donations and legacies | ||
|---|---|---|
| Year to | Year to | |
| 31 Mar 25 | 31 Mar 24 | |
| £ | £ | |
| Membership fees | 30,934 | 23,741 |
| Donations | 54,620 | 42,103 |
| Gift Aid | 7,978 | 7,937 |
| 93,532 | 73,781 | |
| Legacies | 4,085 | 14,513 |
| 97,617 | 88,294 |
Membership fees and general donations have increased by 27% year on year.
4. Charitable Expenditure
| 4. Charitable Expenditure | ||
|---|---|---|
| Year to | Year to | |
| 31 Mar 25 | 31 Mar 24 | |
| £ | £ | |
| Staff costs | 78,939 | 76,047 |
| Funding of research project | - | 9,702 |
| Other costs | 19,181 | 21,540 |
| 98,119 | 107,289 |
5. Trustees
None of the trustees received any remuneration during the year. There were no trustee expenses (£125 in 2023/24).
6. Employees
The average number of employees on a full time equivalent basis was 3.3 (2023/24: 3.1).
7. Debtors
| 7. Debtors | ||
|---|---|---|
| Year to | Year to | |
| 31 Mar 25 | 31 Mar 24 | |
| £ | £ | |
| PMR Paradox project with Leeds University | 8,750 | 17,330 |
| PMR Exercise Booklet with Keele University | - | 299 |
| Prepayments | 51 | |
| Gift Aid accrual | 8,200 | 7,500 |
| Investment Interest | 3,893 | 4,200 |
| 20,895 | 29,329 |
8. Creditors: Amounts falling due within one year
| Year to | Year to | |
|---|---|---|
| 31 Mar 25 | 31 Mar 24 | |
| £ | £ | |
| Independent Examiner's fee | 800 | 750 |
| Social security and pensions costs | 293 | 372 |
| Other creditors | 810 | 2,527 |
| 1,903 | 3,649 |
9. Restricted Funds
| 9. Restricted Funds | 9. Restricted Funds | 9. Restricted Funds | 9. Restricted Funds | |
|---|---|---|---|---|
| Prior to 2024/25 investment income had not been allocated to Restricted Income balances. | ||||
| In these accounts Investment Income has been allocated across all reserves with effect | ||||
| from 01 April 2022, causing an increase in the opening balace for 2023/24 (£58,094) compared | ||||
| with that reported in last years accounts (£57,361). | ||||
| 2024/25 | Balance at | Income | Expenditure | Balance at |
| 01 Apr 24 | 31 Mar 25 | |||
| £ | £ | £ | £ | |
| Stone King Legacy | 19,721 | 907 | - | 20,628 |
| James Tudor | - | - | - | - |
| Anonymous Grantor | 700 | - | 700 - |
- |
| Wellcome Trust | 6,306 | 290 | - | 6,596 |
| Kent Community Foundation | - | - | - | - |
| Sussex Community Foundation | - | - | - | - |
| Sevenoaks Distric Council | - | - | - | - |
| Member Donation | 2,239 | 103 | - | 2,342 |
| Amalgamation with North East PMRGCA | 10,543 | 485 | - | 11,028 |
| 39,509 | 1,785 | 700 - |
40,594 | |
| Restricted Income | ||||
| 2023/24 | Balance at | Income | Expenditure | Balance at |
| 01 Apr 23 | 31 Mar 24 | |||
| £ | £ | £ | £ | |
| Stone King Legacy | 18,994 | 727 | - | 19,721 |
| James Tudor | 100 | - | 100 - |
- |
| Anonymous Grantor | 1,575 | - | 875 - |
700 |
| Wellcome Trust | 6,073 | 232 | - | 6,306 |
| Kent Community Foundation | 5,437 | - | 5,437 - |
- |
| Sussex Community Foundation | 2,680 | - | 2,680 - |
- |
| Sevenoaks Distric Council | 1,400 | - | 1,400 - |
- |
| Member Donation | 11,680 | 261 | 9,702 - |
2,239 |
| Amalgamation with North East PMRGCA | 10,155 | 389 | - | 10,543 |
| 58,094 | 1,609 | 20,194 - |
39,509 | |
| 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 | |||
| 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 | |||
| 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 awareness in the medical professions | |||
| of PMR and GCA in the North East |
10. Legacies Reserve
| 10. Legacies Reserve | ||
|---|---|---|
| Year to | Year to | |
| 31 Mar 25 | 31 Mar 24 | |
| £ | £ | |
| Opening Balance | 105,124 | 112,699 |
| Additions in year | 4,085 | 6,513 |
| Transferred to General Reserve | 13,141 - |
14,088 - |
| Closing Balance | 96,069 | 105,124 |
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 25 | 31 Mar 24 | |
| £ | £ | |
| Restricted Income | 40,594 | 39,509 |
| Legacies Reserve | 96,069 | 105,124 |
| General Reserve | 85,582 | 70,992 |
| Total Reserves | 222,245 | 215,625 |
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 �me and effort to raise funds for the charity and to all who have made dona�ons or a�ended our events.
PMRGCAuk is a small charity with limited resources. Many of those seeking informa�on and support from us do not realise that we are a very small team working virtually. We work hard to spend every penny of our fund wisely.
Appendix 1
Reference and administra�ve details of the charity
Name of Charity: Polymyalgia Rheuma�ca and Giant Cell Arteri�s UK (PMRGCAuk) Charity
Registra�on No: 1128723
Company Registra�on No: 6763889
Registered Address: 10 Coldbath Square, London, EC1R 5HL Office/Correspondence Address: BM PMRGCAuk, London, WC1N 3XX Bank Details: HSBC, 13 Parliament Street, York Trustee/Directors: Humphrey Hodgson (Chair), Janice Maddock (Deputy Chair), Geoff Holroyd (Treasurer), Penny Denby (un�l September 2023), Dr Vanessa Quick, Sara Muller (un�l February 2024), Chris�ne Young (un�l September 2023), Wendy Morrison, Fiona Johnson, Gail Booth, Bill Mansfield and Margaret Bassendine.
Independent Examiner: Katherine Gamage from Gamages Accountancy
President: Professor Bhaskar Dasgupta
Patrons: Lord Robin Butler, Lady Wendy Levene, Dr Sarah Mackie, Dorothy Byrne Staff: Candy Horsbrugh (Director un�l September 2023), Sophie Boyce (Director from August 2023), Fran Benson (Membership Secretary & Assistant Director), Neelam Russell (Kent Regional Organiser un�l March 2024 and Na�onal Support Group Manager un�l September 2023), Charon Balarabe (Administra�ve Assistant) and Lucas Cou�n (Northern Outreach Lead).
About the charity
PMRGCAuk is the na�onal charity for those with Polymyalgia Rheuma�ca and Giant Cell Arteri�s. We were formed in 2008 by the ‘PMR Fighters’, a group of pa�ents who came together determined to find out more about these li�le-known condi�ons and create a na�onal 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 na�onal network of support groups, our telephone helpline, and our online forum. We have become a go-to source of informa�on 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 informa�on, the charity was set up over 10 years ago by a pa�ent group - ͚The PMR fighters - and remains governed today by Trustees the majority of whom live with one of the condi�ons, as well as being shaped by a membership of
pa�ents with either PMR or GCA. The charity ensures those diagnosed never need feel alone or unsupported. Empowered with informa�on, those living with the condi�ons are be�er able to have informed discussions with their doctors and health professionals and feel more in control of their des�ny.
The charity’s objects are:
a) To advance the educa�on of the public through the collec�on, assimila�on and recording of informa�on and data rela�ng to polymyalgia rheuma�ca and giant cell arteri�s by the provision, establishment and maintenance of an educa�onal website, and a network of support groups.
b) To preserve and protect good health by the promo�on of research into polymyalgia rheuma�ca and giant cell arteri�s and the dissemina�on of the useful results thereof for the benefit of the public.
The charity’s ac�vi�es
We provide informa�on and support to people with PMR and GCA
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Support a na�onal network of support groups.
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Provide a telephone helpline run by volunteers with experience of the condi�ons.
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Maintain an online forum for peer support.
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Produce a free informa�on 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 �mes per year & send regular email and le�er updates.
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Maintain and up to date website and improved social media.
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Distribute informa�on to rheumatology departments and other relevant loca�ons. We raise awareness within the public domain, medical profession and government.
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Conduct na�onal 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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A�end mee�ngs with health professionals and NHS England.
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from undiagnosed GCA.
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We support and promote research into PMR and GCA.
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Provide pa�ent representa�on on interna�onal working groups, such as those to develop new guidelines for the management of PMR and GCA.
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Become ac�vely involved in research projects undertaken by other organisa�ons, primarily through pa�ent representa�on.
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 na�onal network of support groups. Our work suppor�ng the medical and research community through vital pa�ent representa�on has also helped to drive change in diagnosis and treatment including the release of new interna�onal 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 suppor�ng over 5,000+ people a year through our various services, run by a small core staff team suppor�ng 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 na�onal network of support groups and the increase in those accessing our informa�on, as well as a wealth of posi�ve stories from those using our services.
Appendix 2 –
Part A - Report from support groups
Not all groups choose to provide a report.
Pamela Noble – East Dorset
Since spli�ng with west Dorset we are able to give more �me and support to our members which is much appreciated.
travel insurance.
Several members felt well enough to have taken holidays recently which is to be celebrated. Sylvie gave a short talk on Well Being.
We are very lucky that our local Consultant Rheumatologist Dr. Khurshid is so suppor�ve of the group and he is a�ending the next mee�ng in July. West Dorset are joining us on this occasion.
In future we are hoping to locate a Pharmacist to a�end our mee�ng to help us understand more about specific medica�ons and how they interact.
Once again we are planning to have a Christmas lunch in late November at the Garden Centre.
Chris�ne White
It has been great to welcome along quite a few new members this year, who have joined us for our monthly gatherings in Maidstone, and we've been able to share our many differing experiences. We've discussed everything from steroid tapering, managing fa�gue and pacing and the effect of medica�on on the adrenal glands and the HPA axis, as well as �ps about not ea�ng liquorice while taking prednisolone, because it can increase the amount of steroid in your body, and how to add medical informa�on and emergency contact/s to your phone's locked screen.
Service, which included details of the free home Safe and Well visits available for customers who may have par�cular needs or priori�es, including living with long term medical condi�ons. A couple of us were even able to be referred for a home visit there and then!
Joan Mowl & Sue Beesty – Shropshire
The Shropshire group meets regularly in the Community Room in Tesco Extra, Shrewsbury. Recently we have been able to discuss new research and moves to rename PMR and GCA (and LVV) to GPSD. This is an acronym for Giant Cell Arteri�s, Polymyalgia Rheuma�ca and Large Vessel Vasculi�s Spectrum Disease. All of which should be treated as part of a spectrum of the same disease.
We are hoping to arrange special guest speakers or an ac�vity. If you have any sugges�ons and would like to a�end any of our future support group mee�ngs, please email us on shropshire@pmrgca.org.uk.
Janice Maddock & Wendy Caines – Pinner & Ruislip
Both the Pinner and Ruislip groups con�nue to thrive with a core group of a�endees. We had one speaker from Age UK who came and spoke about the services they offer and about benefits that they can help with claiming. Discussions over the last year included issues such as the importance of moving, tapering, adrenal insufficiency, sick day rules and support from GP's (or lack of in some cases) Wendy and Janice enjoyed a lovely Christmas meal with some of our members and we look forward to our first Summer Lunch in July as well as our group effort comple�ng a Marathon in a Month.
Anne Smedley – Whitstable
We had a really lively start to 2025, everyone has something to talk about especially a�er Xmas.
Our mee�ngs usually a�ract about 11 members each month & we also encourage people to give their apologies.
discussed. This opened up a whole new range of topics not discussed before & possibly created some new members!
April had us watching a Zoom recording about our Stomach Protectors - an eye opener for some.
Lou Arnold was our guest speaker in May, we had 13 join her Ac�ve Body Ac�ve Mind class which focuses on improving balance, strength & coordina�on. Who knew children's playthings - bean bags, hopscotch (no jumping) & walking a �ghtrope line would cause so much laughter!
Tessa Tipp & Pauline Kenny – West Dorset
The West Dorset group was formed in March ’25 with a�endance from Beaminster/Bridport/Yeovil/Weymouth areas. Numbers a�ending the East Dorset group had grown too large and journey �me is now reduced for some members from 1hr+ to 30 mins each way. As members predominantly suffer from GCA, this move was welcomed. Ini�ally 11 members a�ended falling to 6 at subsequent mee�ngs, due to holidays and date clashes. It is jointly run by previous East Dorset members to allow con�nuity when absent.
We meet monthly at the PIP Poundbury café in a separate mee�ng room at a cost of £10/hr, which ini�ally is being privately funded. This is a lovely venue with big windows, comfortable sea�ng and self-catering coffee/tea available for £1. We meet from 11:00 to 12:30 monthly on a Tuesday and listen to members updates since the last mee�ng. This
gives individuals a chance to receive feedback from group members including Dorset Lady from Health Unlocked, whose support is highly valued. A�erwards we have pre-ordered lunch together from the cafe. We feel that the private space gives be�er opportunity to share our experiences and be heard, although we need funding to con�nue to use this space in the future. We aim to join with East Dorset for Consultant led mee�ngs.
Catherine Spencer – Brighton
The Brighton Support group con�nues to thrive. We have 15 members and we have bi monthly mee�ngs with the op�on of face to face or Zoom.
It is great that we can share things and mutually support each other.
Linda Evans – Havant
We currently have over 40 members who have joined us since the group was set up in May 2023. Not everyone a�ends all the mee�ngs but we have a regular core number of 15 to 20. Several members have opted to maintain contact electronically so we keep them informed of visits and talks.
Colin Beevor, Senior Nurse Matron, maintains constant support from the local Rheumatology Dept for our group. He has arranged various prac�cal sessions including informa�on about Osteoporosis and Exercise with PMR & GCA. In addi�on to these, two of the department consultants have shared valuable up to date informa�on about current research and treatments for both condi�ons. The ques�on and answer sessions which followed these sessions were invaluable.
Lucille Baldwin – Great Yarmouth & Lowesto�
We have at present 11 members with 3 ac�ve GO's - myself being Admin.
We have been busy handing out posters to local surgeries, library and Age Connected to announce our presence in the community. I have created a Facebook page with our contact details and some informa�on of the illnesses.
We have a member mee�ng on 11th June and another two scheduled for 10th September and 10th December. At the June mee�ng we have arranged for Consultant Rheumatologist Dr Makkuni to do a Q&A session for our members as it seems some have ques�ons to ask. We are working on a Yoga teacher to come to the September mee�ng to talk about the importance of exercise and the GO's are mee�ng on 3rd June to discuss ideas for the December mee�ng and therea�er.
Catherine Orr – Sevenoaks, Tonbridge & Tunbridge Wells
The group meet every other month at our new venue in Southborough. The new venue is quieter and easier for conversa�on.
The mee�ngs are usually on Wednesdays with occasional varia�on to accommodate anyone who cannot make this day.
Yvonne McGowan, Teresa Cook, Sue Barrass & Sue Hargreaves – Yorkshire
have held 16 mee�ngs and 12 Zoom sessions. The a�endance varied from 2 -10 also depending on loca�on for the face-to-face mee�ngs. These mee�ngs are informal with a set agenda, held in a café or community room. The aim is to provide a structured approach for the group and put them at ease, enabling discussion and ample �me for a ques�on-andanswer session
In January we had Dr Claire Vandevelde as a specialist speaker in January for our Zoom Session. The topic was Osteoporosis and Bone Health. She gave an in depth talk with an excellent presenta�on followed by a Q&A session. We had more than 40 a�end and it was very well received. Feedback was all posi�ve.
In April for our next Zoom session, we chose to have a talk on Steroids and Diet given by Teresa Cook. Again, this a�racted over 40 people as we extended our invita�on to those on HealthUnlocked. We will be looking to follow this up to see who benefi�ed from the talk and found the informa�on and support useful.
YSG has been working with Dr Sarah Mackie this year and her research team from Leeds Teaching Hospitals on the Paradox Project led by Lucas Cou�n, Northern Project Lead. This came to an end in March and Lucas has now le� the charity to work in Denmark. The Call-toAc�on dissemina�on event held in Leeds was put on to showcase the outcomes of the program.
It was good for our members to have the opportunity to be involved in this research. Now the final report has been submi�ed for the Paradox Project we hope more funding will become available for further research project like this. Dr Mackie and her team are pa�ent centred in their approach to research and treatment for PMR or GCA pa�ents. It’s not all about lab or test results it about the whole person as an individual. This a�tude toward pa�ents encourages par�cipa�on in the focus groups.
Tina Manolis – Chichester
Since last year we have had 3 ladies join our group who have quite a number of health problems including the original ones so a marathon isn’t an op�on for the Chichester group but at the end of the year we intend sending a dona�on from us all. At each and every group mee�ng they all say every �me how much they have enjoyed our discussions and that it helps them so much which is nice to hear.
We are all very pleased that I found an upgrade room for our mee�ngs which we tried out a couple of weeks ago with great success. So everyone is happy.
Derek White - Barnet
We have had several mee�ngs with two mee�ngs this year which were well a�ended for us (10 each ) and we covered experiences of prednisolone, rheumys and pill spli�ng. New a�endees were pleased to find the existence of the Charity and groups like ourselves.
Sue Stevens - High Wycombe
The High Wycombe group con�nue having meet ups on the second Wednesday of each month in the Riverside High Wycombe. We have three new members, two with GCA and one with PMR making a total of nine but not everyone comes every month.
Part B – Report from PMR-GCA Scotland SCOTLAND REPORT FOR UK CHARITY’S ACCOUNTS 2025
We have enjoyed another busy year in Scotland which has seen our membership rise to 419 which is a significant increase from 331 at this point last year. We are not aware of any par�cular reason for such an increase, but the significant overhaul of our website in 2023 has increased our visibility on computer search engines which will have led more browsers to our website. The site con�nues to be a useful source of informa�on for many people, both medical and non-medical, providing the ini�al point of contact for many new members.
We welcomed the addition of a new volunteer on the Helpline team during 2024 and since then another two new volunteers have come forward. This is a tremendous boost for such a vital service and we give our most sincere thanks to Helen and all of the team.
Five local support groups continue to meet regularly, monthly or bimonthly, in Aberdeen, Dundee, Glasgow, Edinburgh, and Inverness (Highland) and we estimate that about half of our members maintain contact with these groups. In addition, our online support group is now established and meets every three months replicating the ethos and content of our inperson groups.
At our AGM in 2024 we heard from Professor Neil Basu of the University of Glasgow who talked about his work on fatigue and different approaches to help patients cope with this common problem. He discussed various types of treatment including exercise, talking therapy, and education on control techniques. We also had a quick update from Dr Lisa Hutton on her involvement with setting up a Scottish site as part of the Sterling project which is investigating different drug treatments for relapsing PMR. These topics are extremely relevant to our everyday experiences as patients.
A main objective of our charity is to support and promote treatment and research activities into PMR and GCA. I am delighted to say that we have been able to resume our financial support of research work by making a grant payment of £2,000 to a project under the auspices of the University of Glasgow. The grant will go towards work looking at blood characteristics of GCA patients which may lead to new avenues of treatment other than steroids. This is exciting work but the bulk of our involvement in research is rather more mundane, but in some ways just as important. We are involved with a wide range of committees and working parties which contribute to research both domestically and internationally. Some of the committees and meetings support government planning and service delivery, whilst others are gathering patient data or views as part of research projects on diagnosis and treatments.
All the work mentioned above would not be possible without the efforts and support of all our members. I must, however, give special thanks to our Trustees, to our Helpline volunteers, and to the organisers of our support groups.