2025-12-31-accounts - PMR-GCA Scotland

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PMR-GCA SCOTLAND

Scottish Charity Number: SC051207

Report and Accounts

for the year ended 31 December 2025

PMR-GCA SCOTLAND

Scottish Charity Number: SC051207

ANNUAL REPORT AND ACCOUNTS

The Trustees present their Report together with the Accounts of PMR-GCA Scotland for the year to 31 December 2025.

Status PMR-GCA Scotland is a Scottish Charitable Incorporated Organisation Principal Office 28a Dulicht Court Grantown on Spey PH26 3AB Website www.pmrgcascotland.com Trustees DV Carrott Secretary RG Cuthbert Chair LM Neill RJ Williams Treasurer

PURPOSES

The organisation’s purposes are:

to provide support for people who have, or have suffered from, Polymyalgia Rheumatica and/or Giant Cell Arteritis (PMR and/or GCA), their relatives and carers; and
to raise awareness and advance the knowledge of the public, clinicians, researchers, and decision makers about all aspects of PMR and/or GCA; and
to support by way of grant or otherwise any charity, organisation, individual, activity or project which: provides treatment for; or undertakes research into; or provides educational resources about; PMR and/or GCA.

MEMBERSHIP

Membership is open to any individual aged 16 or over who supports the purposes of the charity.

ORGANISATION

PMR-GCA Scotland is managed by a Board of Trustees who are elected by Members at the Annual General Meeting to serve for one year but are eligible for re-election. Further Trustees may be appointed by the Board at any time to serve until the next Annual General Meeting, at which time they are eligible for re-election. Trustees must be Members of PMR-GCA Scotland.

The Board meets four times a year and has appointed office bearers to ensure the efficient running of the charity.

PMR-GCA SCOTLAND

Scottish Charity Number: SC051207

ANNUAL REPORT AND ACCOUNTS

OVERVIEW

Welcome to our Annual Report for the year to 31 December 2025. In some respects it has been a relatively quiet year, but only as regards major events. The most important thing is that we have maintained our core activity of supporting patients and others who are struggling with the impact of a diagnosis of polymyalgia rheumatica and/or giant cell arteritis. We achieve this through direct personal contact on the Helpline or at support group meetings, publication of information on our website, distribution of information by post or through medical contacts, and support for and participation in medical research and lobbying. When you think about each item in turn you realise that it hasn’t been a quiet year at all.

Our AGM in May enjoyed a talk from Dr Lisa Hutton who covered all aspects of a patient’s journey with PMR. It was interesting to hear a rheumatologist’s perspective on these matters because the condition is usually treated by local GPs, and members often feel slighted when only “atypical” cases are referred to a consultant. Lisa demonstrated the wealth of knowledge and understanding that a consultant can bring to the table, but sadly constraints of time and money mean that changes are unlikely to happen any time soon.

We get great satisfaction from work to support and promote treatment and research activities into PMR and GCA. The lists on pages 6 and 7 of this report show the wide range of activities in which we are involved which contribute to research both domestically and internationally. Some of the committees and meetings support government planning and service delivery, whilst some are gathering patient data or views as part of research projects on diagnosis and treatments. Sadly, the Toccata project being run from Leeds did not secure the funding necessary to proceed – not through any deficiency in the proposal, but simply because the expense involved in doing a water-tight blind random test of a drug was more than the funders were able to accept. On a more positive note we have had meetings with a drug company looking to get licencing in Scotland for a new treatment for GCA. There is not much information available at present but an expansion to the range of treatment options would be a welcome development. My thanks go to all our members who give time to these valuable activities. Please get in touch with me if you would like to be involved too, or simply want more information. Members are welcome to sit in on, and contribute to, our Trustee meetings which are held online – it is a good way to learn about the breadth of our activities.

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. If you would like to help with some aspect of our work please contact me – don’t wait to have your arm twisted!

LOCAL SUPPORT GROUPS.

We have currently five groups operating in person which meet regularly, monthly or bimonthly, in Aberdeen, Dundee, Glasgow, Edinburgh, and Inverness (Highland). As I write this report we are in the process of establishing a new group in Perth following an approach from a member in the area. Attendance at meetings averages around ten, although this can vary significantly depending on each member’s circumstances. Sharing experiences and mutual support whilst socialising over tea and coffee forms the core of the meetings and speakers might be invited from time to time on topics of interest. We estimate that about half of our members maintain contact to some extent with one of our local support groups. Our website has a page for each local support group containing a direct link to the relevant group organiser.

For some members it is just not possible to attend meetings whether that be due to geography, employment, health issues or child-care commitments. To assist such members our online support group meets every three months and replicates the ethos and content of our in-person groups. If you are not involved with any of our

PMR-GCA SCOTLAND

Scottish Charity Number: SC051207

ANNUAL REPORT AND ACCOUNTS

support groups then this could be an easy way to sample the experience. Members are welcome to be attached to online and in-person support groups at the same time.

Any member may start up a group if they would like to do so. The first step is to find a suitable venue, which may be a room in a supporter’s workplace, a local hall or, for 3 of our existing groups, a cafe – handy for coffee and a bun! The charity can then help by sending out invitations for an initial meeting to members in the local area. All it needs is a few members who wish to meet up and a group can be established – there is no minimum number requirement. We can provide help from someone who has done it before, and financial assistance can also be available should it be needed for room hire, speaker expenses, publicity etc., although all groups are encouraged to become self-sufficient when possible. Contact the Secretary by email if you would like to volunteer in this way.

Current information about all the groups, including meeting times and places, is available on the website.

HELPLINE

The Helpline is one of our most important activities and is operated by a committed team of volunteers. They are the first point of contact for many newly diagnosed patients and the support and information given out is very important. Most patients are bewildered by a diagnosis of PMR or GCA because they have never heard of the conditions before. It is a great comfort to many when they make contact with the Helpline and receive practical information to assist in those early days, and indeed throughout the later stages as fresh challenges arise.

The charity has seven volunteers located across Scotland who answer calls to the Helpline number at a rate of about 2 calls per week. Each volunteer is on duty for roughly one week per month (allowing for holidays and other commitments), during which they both give out information about the charity and the illnesses and act as a friendly and understanding listener as necessary. All have or have had PMR and/or GCA. Management of the team and the call handling system continues in the capable hands of Helen Faccenda. We welcome the addition of new volunteers during 2025 and give most sincere thanks to Helen and all of the team for this valuable service.

If you are interested in helping with this activity then please contact us through the website or by calling the Helpline number. There is no requirement for detailed medical knowledge, although as patients we do accrue quite a volume of knowledge. All new volunteers receive appropriate training funded by the charity.

INFORMATION PACKS, NEWSLETTERS and MEMBERSHIP

Information packs aimed at patients, family and friends are automatically sent out on completion of a membership application form on the website. The pack contains information regarding PMR and GCA with signposting to further reading, much of which is accessible through the website which has a wealth of information. For those without access to the internet help is on hand via the Helpline. A hardcopy of the information can be posted to non-internet users, but this is a rare occurrence today with most people using Smartphones or other electronic devices.

Our trifold leaflet contains basic information about PMR and GCA and the work of the charity. This is useful for distribution to medical facilities (hospitals, GPs, etc). If you would like to have some copies for your local hospital or medical centre, please contact the Secretary or Helpline.

New members also receive a copy of the NewsWire magazine, which is sent out to members three times a year, either by post or, increasingly, by email.

PMR-GCA SCOTLAND

Scottish Charity Number: SC051207

ANNUAL REPORT AND ACCOUNTS

We currently have 472 members which is a significant increase from 419 at this point last year. There is no one reason for such an increase, but we continue to benefit from the overhaul of our website in 2023 which increased our visibility on internet search engines.

With a view to efficient and economic operation, members are encouraged to use electronic communication to receive paperwork and thus reduce costs and administrative time, but hardcopies are sent by Royal Mail on request. Please contact our Secretary if you wish to switch to electronic communications.

WEBSITE – pmrgcascotland.com

The website continues to be a useful source of information for many people. Importantly it provides access to trustworthy medical information including medical guidelines, relevant research papers, and advice on healthy living for those with the conditions. Details of support group locations and meeting times can be found, as well as personal stories from members which help new patients realise that they are not suffering alone. It is the initial point of contact for many new members and although most visitors are UK based, we do get contacts from elsewhere in the world and endeavour to help where possible. Our website statistics also show an increasing use of mobile phones to access the site – maybe the Chair will need to succumb and get a smartphone to keep up with the membership !

Our website continues to be a very efficient vehicle for receipt of donations, proving beneficial to both the charity and the donor in terms of simplicity and efficiency. Our online service allows donations related to organised events and gatherings registered with us. We call this “Simply Sponsor” and more details can be found on the website. We also have a “Gift in Wills” option. With proper professional advice we continue to ensure our compliance with the regulatory issues that affect us.

FINANCIAL REVIEW

The Receipts and Payments Account shows a surplus for the year of £1,658 (2024: deficit of £1,375), all of which is in respect of Unrestricted Funds. There is no movement in Restricted Funds during the year.

During the year we received donations of £6,198, including donations from charitable trusts of £1,000. Other donations amounted to £5,198 which is a magnificent total made up of a variety of large and small individual amounts. Gift Aid of £393 continues to be a welcome bonus for us and total income was £6,591 (2024: £6,005).

Total costs at £4,933 are down from last year’s figure of £7,380 mainly due to the research grant of £2,000 paid out in 2024. Other costs were broadly in line with previous periods. Once again our online Members Day and AGM has helped to keep costs down.

The surplus means that our total funds, both Restricted and Unrestricted, now stand at £22,748 and we remain well placed financially to continue the work of the charity in the coming years.

The trustees are extremely grateful to all those individuals and trusts who have supported the charity financially in 2025 and we welcome all donations and fundraising efforts, big and small, regular and one-off.

Richard Cuthbert, Chair

10 May 2026

PMR-GCA SCOTLAND

Scottish Charity Number: SC051207

ANNUAL REPORT AND ACCOUNTS

WORKING WITH OTHERS

PMR-GCA Scotland representatives are involved in many areas of research and development of good practice, both nationally and internationally, and have participated in meetings with the following :

Health Improvement Scotland (HIS)

The STERLING trial (STEroid- reducing options for ReLapsING PMR)

The GCA/PMR International Study Group

St Andrews University Patient Partners

Leeds Patient and Public Involvement

OMERACT (Outcome Measures in Rheumatology) PMR Working Group

OMERACT Patient Research Partners

OMERACT Remission in Rheumatoid Arthritis Working Group

OMERACT POLOS (Patient Reported Outcomes in Longitudinal Observational Studies) Working Group

The TOCCATA trial ( TOCilizumab ContinuATion in giant cell Arteritis)

GCA-PMR Spectrum event in London plus online survey

Holyrood Cross Party Group on Arthritis and Musculo-skeletal Conditions

Scottish Systemic Vasculitis Network (SSVN)

ACR/EULAR (American College of Rheumatology/European Alliance of Associations for Rheumatology) Working Group on Response Criteria for GCA

International Taskforce on Imaging in PMR

OMERACT Working Group on Flare in Osteoarthritis

OSCR (Office of the Scottish Charity Regulator)

SIGN (Scottish Intercollegiate Guidelines Network)

The Scottish Medicines Consortium (SMC)

Throughout : members act as volunteer patients who help in the training of doctors in St Andrews Medical School and contribute to many areas of research as patient partners, in focus groups, or responding to questionnaires from researchers.

PMR-GCA SCOTLAND

Scottish Charity Number: SC051207

ANNUAL REPORT AND ACCOUNTS

OTHER ORGANISATIONS AND AFFILIATIONS

We are members of the following organisations:

PMRGCAuk : Although no longer formally affiliated, we attempt to work closely together but remain distinctly separate organisations. PMR-GCA Scotland continues to have a dedicated page in the tri-annual newsletter which is mailed or emailed to all our supporters.

The Health and Social Care Alliance Scotland (The Alliance): The ALLIANCE brings together 1500+ organisations and over 370 individual members to ensure the voice of people and unpaid carers, and the expertise of the voluntary sector, are influential in shaping policy and practice. PMR-GCA Scotland contributes to Scottish Government consultations where it feels that it is able to offer insight.

Holyrood Cross Party Group (CPG): PMR-GCA Scotland retains its membership of the Arthritis and Musculoskeletal Conditions group and attends regularly. The meetings are usually held in the Scottish Parliament building or online, are chaired by a Scottish Member of Parliament and look at areas of interest to the member organisations with the hope of bringing these to the attention of MSPs where action is needed.

The Helplines Association : Membership of this association, at “Our Community” level allows the charity to benefit from best practice experience and provides training courses for our volunteers.

Scottish Council for Voluntary Organisations (SCVO) : SCVO works in partnership with the voluntary sector to advance our shared values and interests. It has over 1500 members who range from individuals and grassroots groups to Scotland-wide organisations and intermediary bodies. Through lobbying and campaigning SCVO works to advance the interests of our members and the people and communities that they support. PMR-GCA Scotland is classified as a grassroots group and does not pay a membership fee but is able to benefit from their advice and literature.

Scottish Systemic Vasculitis Network (SSVN): This is a National Managed Clinical Network for Scotland which will provide expertise throughout the country for all systemic vasculitis illnesses, including GCA and Large Vessel Vasculitis (LVV) which are the commonest types in older people.

PMR-GCA SCOTLAND

Scottish Charity Number: SC051207

ANNUAL REPORT AND ACCOUNTS

Independent examiner’s report to PMR-GCA Scotland

I report on the accounts of the charity for the year ended 31 December 2025 which are set out on pages 9 to 11.

Respective responsibilities of trustees and examiner

The charity’s trustees are responsible for the preparation of the accounts in accordance with the terms of the Charities and Trustee Investment (Scotland) Act 2005 and the Charities Accounts (Scotland) Regulations 2006. The charity’s trustees consider that the audit requirement of Regulation 10(1) (d) of the 2006 Accounts Regulations does not apply. It is my responsibility to examine the accounts as required under section 44(1) (c) of the Act and to state whether particular matters have come to my attention.

Basis of independent examiner’s statement

My examination is carried out in accordance with Regulation 11 of the 2006 Accounts Regulations. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeks explanations from the trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently I do not express an audit opinion on the view given by the accounts.

Independent examiner’s statement

In the course of my examination, no matter has come to my attention:

which gives me reasonable cause to believe that in any material respect the requirements:
to keep accounting records in accordance with Section 44(1) (a) of the 2005 Act and Regulation 4 of the 2006 Accounts Regulations, and
to prepare accounts which accord with the accounting records and comply with Regulation 9 of the 2006 Accounts Regulations have not been met, or
to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.

Sheena Gibson FCCA James Hair & Co 59 Bonnygate Cupar KY15 4BY

13 May 2026

PMR-GCA SCOTLAND

Scottish Charity Number: SC051207

ANNUAL REPORT AND ACCOUNTS

RECEIPTS AND PAYMENTS ACCOUNT

FOR THE YEAR ENDED

31 DECEMBER 2025

2024 £	RECEIPTS	2025 £	2025 £	2025 £
Total		Unrestricted	Restricted	Total
5,663 342 -	Donations Gift Aid repaid Bank Interest	6,198 393 -	- - -	6,198 393 -
6,005	Total receipts	6,591	-	6,591
	PAYMENTS
767 1,259 52 62 - 50 - 257 363 743 - 1,149 258 2,000	Advertising/Information Postage Stationery Delegate Expenses Donations for Hall Donations/Presentations AGM and Annual Conference Support Groups Insurance Helpline Costs Volunteer Expenses Computer/website Subscriptions Research Grants Awarded	609 1,073 57 - - - - 110 371 861 - 1,281 115 -	- - - - - - - - - - - - - -	609 1,073 57 - - - - 110 371 861 - 1,281 115 -
6,960	Total payments for charitable activities	4,477	-	4,477
420	Examiner’s fee	456	-	456
7,380	Totalpayments	4,933	-	4,933
(1,375)	Surplus/(deficit) for period	1,658	-	1,658

Scottish Charity Number: SC051207

PMR-GCA SCOTLAND

ANNUAL REPORT AND ACCOUNTS

STATEMENT OF BALANCES AS AT 31 DECEMBER 2025


2024 £		2025 £
22,465 (1,375)	Bank and Cash Balances At beginning of period Surplus/(deficit) for period	21,090 1,658
21,090	At end of period	22,748
20,293 797	Reserves Unrestricted reserves Restricted reserves	21,951 797
21,090	Total Reserves	22,748

-	Assets Computer and website	-
- 420	Liabilities Advertising/Information – Newswires Independent Examiner's Fee	- 720
240	Debtors Gift Aid Repayment to 31 December 2025	330

Approved by the Management Committee and signed on its behalf on 10 May 2026

Richard Cuthbert, Chair

PMR-GCA SCOTLAND

Scottish Charity Number: SC051207

ANNUAL REPORT AND ACCOUNTS

NOTES TO THE ACCOUNTS

FOR THE YEAR TO 31 DECEMBER 2025

No member of the Management Committee received remuneration.
Mr Richard Cuthbert received reimbursement of £266 (2024 - £156) in respect of costs incurred by him during the year. Of these £251 related to operational costs and £15 related to travel expenses incurred carrying out duties in connection with PMR-GCA Scotland.

Mr David Carrott received reimbursement of £1,122 (2024 - £1,470) in respect of costs incurred by him during the year. Of these £1,122 related to operational costs (mainly postage and stationery) and £nil related to travel expenses incurred carrying out duties in connection with PMR-GCA Scotland.

Mrs Lorna Neill received reimbursement of £nil (2024 - £130) in respect of costs incurred by her during the year.

Mr Richard Williams received reimbursement of £8 (2024 - £8) in respect of costs incurred by him during the year. Of these £8 related to operational costs and £nil related to travel expenses incurred carrying out duties in connection with PMR-GCA Scotland.