2022-03-31-accounts

PMR GCAUK Polymyalgia Rheumatica & Giant Cell Arteritis UK Accounts and Annual Report 2021- 2022

Message from Chair of trustees

The last year has seen the charity, like so many others, emerge blinking into the light of not a postCovid but a with-Covid world. I think we probably all feel that the pressures of the pandemic have lifted, even though many of our members continue to be vulnerable, thanks to the remarkable achievements of the vaccination campaign. I also think the charity has become stronger whilst facing the challenges of the last two years.

So unapologetically I start with a tribute to our staff, our Director Candy Horsburgh and Deputy Director Fran Benson, for not only keeping the show on the road but also expanding our scope. Embracing on-line communication has kept many local groups going, and indeed enhanced the popularity and impact of the Annual General Meeting and provided well-attended webinars over the year. Our speakers at the 2021 AGM (Madeline Whitlock on the role of a specialist nurse, Chetan Mukhtyar on GCA and Justin Mason on PMR) were greatly appreciated; during the June PMRGCAuk

GCA’; huge thanks to all of those. We have increased our membership — although we still worry we don’t reach all who we might help — and these webinars have been an important driver to that.

At the group and individual level, a huge amount of work by volunteers and by my fellow trustees continues. The Helpline continues as a valuable resource, and we obtained and are very grateful for a grant from the James Tudor Foundation for Helpline Volunteer Training. Neelam Russell, our Kent Regional Organiser, has been tireless together with our former Chair Penny Denby - in expanding activities with new groups in Dartford, Whitstable and Sevenoaks and Neelam also coordinates the Phone Friends (formerly known as the ‘buddy’!) service we initiated. We have also raised support from the Sussex Community Foundation to recruit a Sussex Regional Organiser, and funds from Sevenoaks District Council, and are seeking to find local funds from other areas to expand our local support systems. We still feel our activities in some other parts of England and Wales need expanding and are seeking to do this perhaps someone reading this will feel they can help?

We were really delighted that, thanks to a generous donation, we could make a grant for research

• into PMR, and we awarded the grant after a formal ‘peer review’ process to Dr Max Yates and colleagues in Norfolk, for an ambitious project analysing nationwide prescribing practice to identify the true picture of steroid use in PMR. As part of the awarding process we were granted the status of non-commercial partner to NIHR, the National Institute for Health Research, which funds and coordinates research in the NHS in England. We look forward eagerly to the results of the research. We and many thanks to those of our members who contributed - have also been involved in a

s to be

done.

Finally, PMRGCAuk is totally dependent on our membership, and particularly on our active volunteers, to whom I and all my fellow trustees are hugely grateful.

tion about a condition that very few people

understand.”

Humphrey Hodgson Chair of Trustees

Membership

Membership - our driving force

Our members are vital to the work we do, from shaping our services and strategy to acting as ambassadors and fundraisers for the charity.

Our membership fee is still only £15 a year and by the end of March 2022 we had 1453 members. This includes patient, friend and professional members of which 381 were new members during 2021/2022.

While members come and go as people go into remission, 26% of our membership have been with us for five years or more.

� I have recovered but I stay a member in case it comes back and so I can inform others there is light at the end of the tunnel. �

• Membership is so important. Thank goodness for the expertise. �

�I �ill con�in�e �o ��ppor� �he chari�� �i�h m� member�hip e�en if I go in �o remi��ion �o I can follo� �he excellent work you do for people like me and I will help out where I can ��

Members ’ Day

O�� M��b���� Da� a�� AGM ��� 1 took place online. Our expert speakers from the medical and research community � ��� a�� ���� ��� ���� �� a����� ���� �� ��� ���b���� ���������� ���� Professor Justin Mason, Dr Chetan Mukhtyar and Madeline Whitlock.

Professor Justin Mason, consultant rheumatologist and professor of vascular rheumatology within vascular sciences at Imperial College talked on � PMR and GCA � Are we making progress? � . Madeline Whitlock, Clinical Nurse Specialist (CNS) in the muscular skeletal directorate at Mid and South Essex University Hospitals Group talked about the nursing perspective of managing patients with GCA and PMR. Our final speaker was Dr Chetan Mukhtyar, consultant rheumatologist at Norfolk and Norwich Hospital and PMRGCAuk trustee. Chetan talked about steroid (prednisolone) tapering, the history of steroids and dosing, and his own Norwich Regimen plan.

Feedback from attendees:

Excellent topics covered from all three presenters.

The expertise and different viewpoints of the speakers was enlightening.

Hearing the speakers talk about their interest and commitment to helping people with PMR/GCA.

All very good but the tapering of steroids was an interesting aspect for me.

Justin Mason's presentation, quite outstanding, best speaker I've heard so far on our illnesses!

And the talk from the Clinical Nurse Specialist in which she emphasized the more personal aspects of steroid treatment eg mood changes, ways to get support, etc.

The honesty of the speakers. No posturing or hiding behind stats.

Hearing my condition discussed in a professional way that reminds me to take it seriously, and also that I still have so much to learn.

Appreciating what an excellent organisation PMRGCAuk is. Feeling part of a well-run organisation and the speakers.

Being able to join from home and not travel a long way. The speakers were excellent and I liked the trustees' introductions. It was good to put faces to names and learn a little about them.

I enjoyed everything about Members' Day. It was a nice touch that each of the Trustees said something about themselves and their backgrounds.

To everyone at PMRGCAUK, thank you so much for your ongoing hard work and for making the Members Day so interesting and helpful .

PMRGCAuk Week 6 – 12 June 2021

PMRGCAUK WEEK

PMRGCAuk week 2021 celebrations remained online and took place in June. We were delighted to welcome our two guest speakers and more than 200 members and guests to our PMRGCAuk Week webinars.

The first talk, Living with GCA, was with Georgina Ducker, vasculitis and connective tissue disease (CTD) nurse at Norwich and Norfolk Hospital . Georgina spends about 60% of her time with giant cell arteritis (GCA) patients, working closely with our trustee, consultant rheumatologist Chetan Mukhtyar.

The second webinar, with Dr Vadivelu Saravanan, consultant rheumatologist at Queen Elizabeth Hospital in Gateshead, was a very comprehensive talk about steroids, covering recent PMR research which helped us to understand the challenges and importance of getting a good diagnosis and treatment as quickly as possible.

We also launched our 2022 calendar photo competition after the success of our 2021 calendar photo competition last year. This year we had over 45 entrants and 180 photos to choose from. Our 2022 calendar sold out within days, raising funds and awareness of the charity. We raised over £300 for the charity through its sales. Thank you to everyone who sent in a photo.

Thank you to all our members who gave donations for PMRGCAuk Week and for the lovely messages of thanks.

Feedback from attendees:

Excellent webinar. A lot learnt and extremely helpful thank you

Really enjoyed this webinar, very useful.

Brilliant informative talk, thank you very much

Excellent webinar. Clear and concise. Thank you so much.

Thank you - super helpful and food for thought.

Very interesting and informative, thank you.

Providing support and information

We provide support through our Telephone Helpline, our national network of Support Groups and through our online HealthUnlocked forum.

Telephone Helpline

The Helpline volunteers spoke to 403 callers from April 2021 - March 2022. The main reasons for calling are for information about PMR and/or GCA; questions and concerns about taking and reducing steroids; needing support generally with managing their condition and to talk to someone who understands through having had PMR or GCA.

Calls may last from 5 - 40 minutes each, with an average of 15- 20 minutes, depending on the need of the caller.

The helpline team consisted of six volunteers most of whom who have worked together for 4 � 5 years.

Statistics

• 74% of callers had PMR; 12% GCA; 14% had both

• The average age of callers was 71 and ¾ of callers were women

• 33% were newly diagnosed; 15% had been diagnosed less than a year; 37% had been diagnosed between 1-4 years and 8% over 5 years

• 78% of the people we speak to are first time callers and 22% of all callers have called more than once, with a small core who call several times

• 84% of calls were for information about PMR and/or GCA and at the end of their call they were either sent an information pack or directed to the website for more information

• Approximately ¾ of callers had questions or concerns about taking prednisolone and/or reducing it

• 8% of callers primarily rang to ask questions about steroid sparing medications

• 30% of callers wanted to talk about their symptoms and whether these were usual for PMR/GCA. Some of these callers felt especially unsupported with difficulty accessing their medical team or PMRGCAuk support groups. This appears to have increased since the pandemic.

• 18% of all callers are recorded as being members of PMRGCAuk

Many callers we speak to express their gratitude of being able to speak with someone who understands what it is like to have either condition and to be on steroids long term. We aim to answer most of the calls in person, but this is not always possible and not all callers feel able to leave a message which we regret as we will always call back if invited to.

We would like to acknowledge the much-appreciated help from Stephanie Beer who every month enters the information gathered from the Helpline calls onto an Excel spreadsheet and has

calculated the statistics on a monthly and yearly basis. Grateful thanks are also due to the James Tudor Foundation, without them we would not have valuable training to help us better support others while also feeling supported ourselves. A big thank you is also due to Alice Hanscomb, our expert Helpline trainer, for her patience, expertise, gentle humour and unfailing encouragement. Finally, and most importantly, our heartfelt thanks go to the wonderful Helpline team without whom the Helpline would not exist.

� I phoned for info. when I was fighting extreme lowness of spirit - but once I spoke to someone who understood - the depression lifted. �

Support groups

Our Network of Support Groups provides an opportunity for people to come together, share experiences and hear from expert speakers. I��� bee� �a�d f�� �a�� ��� be��� ab�e �� �e� �� meetings due to the Covid-19 pandemic and its fallout � b�� ���e� �e�be�� ��� �a�e��� e�e� bee� able to attend groups due to health issues or not having a group nearby, were able to attend groups online via Zoom.

We have 38 Support Groups across the country and one regular Zoom support group, supporting more than 500 people every year. New Groups set up include Sevenoaks, Tonbridge & Tunbridge Wells and Ruislip. We are still working to increase the number of groups in the north of England. A � number of our groups started to meet in person either outside or in very well-ventilated spaces, though many have continued on Zoom and will continue to do so until they feel confident to meet in person. We recruited Neelam Russell (who started working for the charity in May) as our new Kent Regional Organiser, supporting groups in Kent and setting up new groups as well as spreading the word about the charity in Kent. We were also successful in securing a grant for a Sussex Regional Organiser, who will start in September 2022, and our aim is to have Regional Organisers across the country supporting all of our support groups.

G���� f���a�d ���� important that we persuade those who attend meetings of the benefit of joining and becoming a member of the national charity, both for themselves and to amplify the significance of our voice in public discussions about the need for better treatment.

� The group I attend is very good. We have had excellent speakers and support from each other. � Member

� I am pretty satisfied and appreciate others organising them when I have felt too unwell to offer to � do so . Support Group member

�The s�pport gro�ps ha�e been a great blessing. Interacting with others and learning, getting advice from those �ho s�ffer in the same �a��� Support Group member

Neelam Russell, Kent Regional Organiser

I joined PMRGCA in May 2021, in a pilot role, as Regional Organiser for Kent. The main objective of the role was to assess the impact of having a dedicated resource to support local Group Organisers (GOs).

One of the first groups I was able to support was Whitstable who had been unable to meet for a variety of reasons. The group already had a superb venue and at the first meeting, we had a lovely volunteer who agreed to be the Group Organiser. Since then, the Group has met regularly and enjoyed a variety of sessions including seated exercise, lunches, webinars and a talk from the local Lions. Next, Dartford was set up from scratch, which involved finding a suitable venue and a willing GO. They are already meeting regularly and in May joined with another group to arrange a very successful garden centre tour and fundraiser. A new group was also started across Sevenoaks, Tonbridge and Tunbridge Wells, alternating venues, to support members travelling from different areas. We are still looking for a local GO, and so, for the moment, I continue to run that group. More recently, we have just re-started another group in Maidstone that had stopped meeting during the

pandemic and whose GO was unable to continue; we are exploring possible venues and setting up meetings to support the interests of the members attending. Summer and Christmas lunches are definitely one of our most popular events!

I have really enjoyed the role and loved meeting so many different members from all across Kent. A��h��gh I d���� ha�e PMR a�d��� GCA� I ha�e �ea��� �� ��ch ab��� �he debi�i�a�i�g c��di�i�� a�d the extraordinary resilience of those who are living with it.

It is very exciting to see the progress in Kent and very rewarding to witness the difference the support groups make to our members. Next steps are to set up brand new groups in Kent in areas where we currently have no support, as well as continuing to support the existing groups and to hopefully see the role of Regional Organiser replicated throughout the UK.

HealthUnlocked forum

Our PMRGCAuk HealthUnlocked forum is an online patient-led community, enabling members to share their experiences and offer support. Members continue to support each other and engage with the forum on a regular forum; it is a great space not just for those newly diagnosed, but anyone who wants to share experiences and feel less alone. It is a vital and vibrant place and numbers of members continue to grow. HealthUnlocked is administrated and moderated by PMRGCAuk staff and trustees. We are very grateful for all the support we receive on HealthUnlocked, but particularly to our volunteers PMRPro, DorsetLady and Mrs Nails, whose constant work and support is invaluable to the smooth running of the forum.

At the end of March 2022 we had 4,321 active members, with on average about 230 new members signing up each month.

Quotes about the HealthUnlocked forum

�Being there to be able to answer my queries, brilliant information mainly due to there being so many who could and did offer me it to me. I was given confidence to discuss my problems with my rheumatologist, ie persuading him to allow me to use the DSNS (dead slow nearly stop) reduction of prednisolone method.�

�Without the HealthUnlocked PMRGCAuk website mine would have been a very different story. I cannot underestimate the comfort of knowing that people like the volunteers and many others are available and willing to answer questions. Most importantly they talk from t he patients� point of view and are very clear re their boundaries / when the questions must be taken to the medical practitioners. Thank you, and thank them, for all the difference that has made to me and to so many others.�

�HealthUnlocked has been a huge source of advice � reassurance � I wouldn�t have approached my rheumatologist about adrenal insufficiency if I hadn�t read about it there.�

��HU� Forum informs me so many people are struggling in the same boat.�

Raising awareness and funds

Kent Community Foundation - £4,980 towards the administrative supplies and salary of our Kent Regional Organiser

Sussex Community Foundation - £4,864 towards the administrative supplies and salary for a Sussex Regional Organiser

Sevenoaks District Council Community Grant - £1,400 towards the salary of our Kent Regional Organiser for supporting events, people with PMR/GCA and groups in the Sevenoaks area.

James Tudor Foundation - £1,500 towards the continued training of our Helpline volunteers

Masonic Charitable Foundation awarded us £9,000 over 3 years in 2020 to set up and run our Befriending project (now called Phone Friends). We received our second £3,000 instalment in July 2021.

Tesco Bags for Help - £999.70 towards the salary of our Kent Regional Organiser

Whitstable Rotary Club donated £250 to the Whitstable Support group towards hire of hall and refreshments cost.

Southborough Lions Club donated £100 to the Southborough/Sevenoaks support group.

Christmas Card and calendar 2022 sales � we raised £1,500 from sales of Christmas cards. Thank you to Joanne Townsend, our volunteer who sent out all the Christmas cards and to Sue Barrass, who sent out the calendars.

Supporting research

• £50,000 grant towards research into PMR

In March 2021, PMRGCAuk received a very generous donation form one of our members of £50,000 for a grant towards research into PMR.

We awarded a substantial sum of this to Dr Max Yates in January 2022 to research � Improving the quality of glucocorticoid prescribing for PMR in England � . Currently it is recommended that patients newly diagnosed with PMR are started on higher steroid doses, and when the condition is brought under control, the dose is slowly reduced and eventually stopped. Despite these guidelines, there is wide variation in steroid prescribing for PMR. The study will look at the electronic general practice records of 23 million patient. The database is updated weekly from primary care records and i�c��de� i�f���a�i�� �� �a�ie���� diag���e�� �edica�i��� diag����ic �e�� �e���� s and anonymised details such as age, sex, and practice location. Using this information, they will look at the prescribing patterns for patients with PMR and look at what characteristics are associated with the different patterns and how they might be mitigated.

Dr Yates and his team have started working on the project and it will be completed by December 2022.

The remainder of the grant will be awarded in 2022.

We are immensely grateful to the grant maker for their very generous grant.

PMRGCA

Annual Report and Accounts for 2021/22

Financial Review

Following two years that saw substantial surpluses due to income from a legacy and a donation to fund a research project we have had a more balanced year. In 2021/22 £38,498 of the donation was used to fund a research project with the result that we recorded an overall deficit of £32,267. A surplus of £6,231 was made on all other activities.

Income

Income for the year was £86,044 which reflects further growth in income from membership fees and general donations. Grant income totalled £15,344 including £4,980 from the Kent Community Fund and £4,864 from the Sussex Community Fund to develop and maintain the support groups in Kent and Sussex respectively. There was a small amount of income from other fundraising activities.

Expenditure

Expenditure for the year was £118,311 made up of £79,813 of operating expenditure and the £38,498 of funding for the research project. Ongoing operating expenditure increased by approximately £19,100 over 2020/21 mainly due to increased staffing levels. Expenditure on restricted funds includes the research funding, the Kent and Sussex support groups funding, helpline volunteer training and the development of the befriending project.

Balance Sheet

Total funds reduced by £32,267 to £265,558 due to the expenditure on the research project. This follows an increase of funds of £215,998 over the previous two years due to the aforementioned legacy and donation.

The trustees will continue to use these funds 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 £14,620, Restricted Reserves reduced by £36,037 and the General Reserve increased by £18,390 to £74,029 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 sufficient 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 sufficient to meet three to ��� ����h� �f �he cha������ ��g���g ��e�a���g c����.

2. Legacies Reserve

The Trustees have resolved to create a specific Legacies Reserve the purpose of which is to enable the Trustees to manage large unrestricted legacies in an efficient and effective

for the steady and controlled release of such funds into the charity’s general rese rves 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:

The first £5,000 of any individual unrestricted legacy will be treated as part of the General Reserve and any excess over £5,000 will be added to the Legacies Reserve.

At the start of each financial year one-eighth of the remaining balance of each legacy previously added to the Legacies Reserve will be released to the General Reserve.

This policy was introduced with effect from 01 April 2020.

(to follow)

CHARITY COMMISSION FOR ENGLAND AND WALES Independent examinerfs report on the accounts Section A Independent Exaininer's Report Report to th• tr￿t•031 membern of Potymy81Jia Rheumali(a and Gi￿1 Cell Arterliis UK Charlty no Ilf any) On accounts for tho yoar •nd•d 31 March 2022 1128723 '. Set out on p•908 I report to the trustees on my exaMinat￿n of the ￿coUnts of the ajove charity (kne Trust.) for the ye8r ended 3110312022. As the tharitys trustees. you are responslbk for the preparatlon of the acccwnts in aco)rdance with the requireffenls of Ihe Charbtles Acl 2011 (Ihe Arxry. I report in respect of my examlnali(xi of the Trust's aco)unts carri8d ¢ under Bedion 145 of the 2011 Acl and in carrying out my examination. I have followed all the applicable Directions given ty the Chaiity Coffffli&8K u¥KJer secll￿ 145(5)Ib) of the Act. ftespon8lbllltles and bas1• of rwrt Indèpondent 110ve cxjmpleted my examinalK)n. I ccffjfirn Ihat no material matters have examlnerfs statement con to my attentlon in cL￿neCtion with the examnath)n (other than that disclosed bebw"> vthth gives me (ause to believe that in. ￿Y material resp￿t. the a¢cr)unting records were Mt kept in accordarte with se(w)n 130 of th8 Charitss Act; or the acu)unts dKI not accord with the accxwnting records; or the account8 dkl not u>mpty wrfh Ihe applic￿le wuirements ¢oncmiw the fonn and ￿nIent of accwnts set out in the Charilies (Accounts and Reports) Regulations 2CKJ8 other than any requiwent thal Ihe accounts gNe a 'tnJe arKI fairf view which is rK>t a matter ConsNJer￿l as part of an independent examination. I have no concems and have c0ft￿ &ffy8S no olher in conneci#)n with the ex8minatw)n to whtsch attentM)n shoukl be drawn in this report In order to enable a proper understanding ofthe ac(x)unts to be reach￿. Slgn•d: Nam•: Katherine Gamage ACMA R•l•v•nt prof••slo•)al qualificatlonls) or body (If anyl: Assocwte Member ￿ the Chatsred Instibjte of M8werrnt Accountants (Ac￿ CGMA}. Addre81: Oxfordshire. OX18 2QE

Statement of Financial Activities

PMRGCAuk				Charity No (if any) CompanyNo	1128723 6763889
	Annual accounts for the period
Period start date		01/04/2021	To	Period end date	31/03/2022

Section A Statement of financial activities (including summary income and expenditure account)

Recommended categories by activity		Guidance Notes	Unrestricted funds	Unrestricted Restricted income funds	Endowment funds	Total funds	Prior year funds
			£	£	£	£	£
Incoming resources (Note 3)			F01	F02	F03	F04	F05
Income and endowments from:
Donations and legacies		S01	66,421	-	-	66,421	70,328
Charitable activities		S02	1,609	15,344	-	16,953	16,591
Other trading activities		S03	2,294	-	-	2,294	1,820
Investments		S04	376	-		376	214
Separate material item of income		S05	-	-	-	-	105,919
Other		S06		-	-	-	-
Total		S07	70,700	15,344	-	86,044	194,872
Resources expended (Note 4)
Expenditure on:
Raising funds		S08	13,439	-	-	13,439	1,228
Charitable activities		S09	51,032	12,883	-	63,915	57,079
Separate material item of expense		S10	-	38,498	-	38,498	17,840
Other		S11	2,459	-	-	2,459	2,473
Total		S12	66,930	51,381	-	118,311	78,620
Net income/(expenditure) before tax for the reporting period		S13	3,770	36,037 -	-	32,267 -	116,252
Taxpayable		S14	-	-	-	-	-
Net income/(expenditure) after tax before investment gains/(losses)		S15	3,770	36,037 -	-	32,267 -	116,252
Netgains/(losses)on investments		S16	-	-	-	-	-
Net income/(expenditure)		S17	3,770	36,037 -	-	32,267 -	116,252
Extraordinary items		S18	-	-	-	-	-
Transfers between funds		S19	-	-	-	-	-
Other recognised gains/(losses): ~~Gainsandlossesonrevaluationoffixedassetsforthecharity’sownuse ===~~		~~===~~	~~===~~	~~===~~	~~===~~	~~===~~	~~===~~
~~Gainsandlossesonrevaluationoffixedassetsforthecharity’sownuse ===~~		S20 ~~===~~	- ~~===~~	- ~~===~~	- ~~===~~	- ~~===~~	- ~~===~~
Other gains/(losses) ~~Gainsandlossesonrevaluationoffixedassets~~	~~forthecharity’sownuse ===~~	S21 ~~===~~	- ~~===~~	- ~~===~~	- ~~===~~	- ~~===~~	- ~~===~~
Net movement in funds ~~Gainsandlossesonrevaluationoffixedassetsforthecharity’sownuse ===~~		S22 ~~===~~	3,770 ~~===~~	36,037 - ~~===~~	- ~~===~~	32,267 - ~~===~~	116,252 ~~===~~
~~Gainsandlossesonrevaluationoffixedassets~~	~~forthecharity’sownuse ===~~	~~===~~	~~===~~	~~===~~	~~===~~	~~===~~	~~===~~
Reconciliation of funds: ~~Gainsandlossesonrevaluationoffixedassets~~	~~forthecharity’sownuse ===~~	~~===~~	~~===~~	~~===~~	~~===~~	~~===~~	~~===~~
Total funds brought forward ~~Gainsandlossesonrevaluationoffixedassetsforthecharity’sownuse ===~~		S23 ~~===~~	199,058 ~~===~~	98,767 ~~===~~	- ~~===~~	297,825 ~~===~~	181,573 ~~===~~
Total funds carried forward ~~Gainsandlossesonrevaluationoffixedassetsforthecharity’sownuse ===~~		S24 ~~===~~	202,828 ~~===~~	62,730 ~~===~~	- ~~===~~	265,558 ~~===~~	297,825 ~~===~~

Balance Sheet Charity ￿mE PMRGCAuk Charily No CuinDdnv 1128n3 6763889 Section B Balance sheet Rtrf¢lod Unregtrlcted Endowmert Total th18 Totsl IAg1 fvnds Flxed assets Intanglble assets Tanglblè assats Hèritsgè a$￿ts Investments F01 F03 F04 Tglal fixedassets Current assets Sto¢k# Debtors Investments Cash at bank and In hond Total euryent assets (Note 7) 137460 58,571 204,132 42.513 20,217 62.730 179,973 78,788 266,862 281.483 298,724 BIO Crodltors: amounts falllng duo wlthin on8 ygar INot• 81 811 899 .Nel¢uFrenass&tsllllabillts•s) B12 202.828 62.730 265.558 297.825 Total assets les$ euff•nt liabilitiès B13 202.828 62,730 265,558 297.825 Credltors: amounts tslllng duo •ft•r one yoar Provlslons for Ilabllltle6 B14 815 Totslngl assets orllabilltles B16 202,828 62.730 265,558 297.825 Funds of the Charity EndowTfE8nt funds 817 Re$trlcted In¢ome funds (Not6 91 Unrestrlcted fund8 (Note 11) Revaluallon r8seNè 62.730 202,828 819 202 828 199,058 Totalfunds 821 202,828 62,730 265.558 297 825 Sign8d by tr￿￿Es on b&￿[Of al Ihe Date of apprD*l d(Y Prirkt Nan son Geoff Fk)I

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

	Year to	Year to
	31 Mar 22	31 Mar 21
	£	£
Membershipfees	20,685	18,180
Donations	34,780	81,966
Gift Aid	7,648	20,182
	63,113	120,328
Legacies	3,308	55,919
	66,421	176,247

Membership fees and general donations have increased year on year after allowing for the single donation of £50,000 in 2020/21 to fund a research project.

4. Charitable Expenditure

4. Charitable Expenditure
	Year to	Year to
	31 Mar 22	31 Mar 21
	£	£
Staff costs	48,731	41,701
New website and membershipsystems	-	17,840
Fundingof researchproject	38,498	-
Other costs	15,185	18,158
	102,414	77,699

5. Trustees

None of the trustees received any remuneration during the year. Trustee expenses amounted to £154 (£50 in 2020/21).

6. Employees

6. Employees
	Year to	Year to
	31 Mar 22	31 Mar 21
Employment costs	£	£
Wages and salaries	58,502	39,420
Taxes	335	-
Pensions	1,256	2,281
	60,093	41,701

The average number of employees on a full time equivalent basis was 3.0 (2020/21 2.0).

7. Debtors

7. Debtors
	Year to	Year to
	31 Mar 22	31 Mar 21
	£	£
Gift Aid accrual	7,750	17,241
Investment Interest	351	-
	8,101	17,241

8. Creditors: Amounts falling due within one year

	Year to	Year to
	31 Mar 22	31 Mar 21
	£	£
Independent Examiner's fee	600	600
Social securityandpensions costs	237	199
Other creditors	467	100
	1,304	899

9. Restricted Funds

9. Restricted Funds
2021/22	Balance at	Income	Expenditure	Balance at
	01 Apr 21			31 Mar 22
	£	£	£	£
Stone KingLegacy	21,186		3,700 -	17,486
James Tudor Foundation	-	1,500	1,500 -	-
Garfield Weston	7,500	-	-	7,500
Wellcome Trust	5,981	-	-	5,981
Masonic Trust	100	3,000	3,100 -	-
Kent CommunityFoundation	4,000	4,980	3,955 -	5,025
Sussex CommunityFoundation	-	4,864	138 -	4,726
Tesco	-	1,000	490 -	510
Member Donation	50,000	-	38,498 -	11,502
Amalgamation with North East PMRGCA	10,000	-	-	10,000
	98,767	15,344	51,381 -	62,730
Restricted Income
2020/21	Balance at	Income	Expenditure	Balance at
	01 Apr 20			31 Mar 21
	£	£	£	£
Stone KingLegacy	39,026	-	17,840 -	21,186
James Tudor Foundation	1,000	-	1,000 -	-
Garfield Weston	7,500	-	-	7,500
Wellcome Trust	5,981	-	-	5,981
Masonic Trust	-	3,000	2,900 -	100
Kent CommunityFoundation	-	4,000	-	4,000
Member Donation	-	50,000	-	50,000
Amalgamation with North East PMRGCA	10,000	-	-	10,000
	63,507	57,000	21,740 -	98,767
Purpose of each Fund
Stone KingLegacy	To be spent on new development
James Tudor Foundation	To fund the trainingand support for the member helpline
Garfield Weston	Informationpacks,marketingand PR
Wellcome Trust	Roadshows outside London
Masonic Trust	Befriending project
Kent CommunityFoundation	To fund apart-time co-ordinator of the Kent supportgroups
Sussex CommunityFoundation	To fund apart-time co-ordinator of the Sussex supportgroups
Tesco	To fund apart-time co-ordinator of the Kent supportgroups
Member Donation	Fundingfor a researchproject
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 22	31 Mar 21
	£	£
OpeningBalance	143,419	100,000
Received inyear	3,308	55,919
Transferred to General Reserve	17,928 -	12,500 -
ClosingBalance	128,799	143,419

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 22	31 Mar 21
	£	£
Restricted Income	62,730	98,767
Legacies Reserve	128,799	143,419
General Reserve	74,029	55,639
Total Reserves	265,558	297,825

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 effort 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 do not have an office. We work virtually. Our address is a mailbox. All of our staff are part time. You can rest assured that we spend every penny 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

Office/Correspondence Address: BM PMRGCAuk, London, WC1N 3XX Bank Details: HSBC, 13 Parliament Street, York

Trustee/Directors: Humphrey Hodgson (Chair), Dorothy Byrne (Deputy Chair to August 2021), Penny Denby, Janice Maddock (Deputy Chair from September 2021), Wendy Morrison, Christine Young, Geoff Holroyd (Treasurer), Dr Chetan Mukhtyar (resigned February 2021) and Sara Muller.

Independent Examiner: Katherine Gamage from Gamages Accountancy

President: Professor Bhaskar Dasgupta

Patrons: Lord Robin Butler, Lady Wendy Levene, Dr Sarah Mackie

Staff: Candy Horsbrugh (Director), Fran Benson (Membership Secretary & Assistant Director), Neelam Russell (Kent Regional Organiser from May 2021 and Phone Friends Coordinator from October 2021) and Charon Balarabe (Administrative Assistant from November 2021).

About the charity

PMRGCA�k i� �he �a�i��al �a�ie���� i�f���a�i�� a�d ������� cha�i�� for those with the chronic and debilitating auto-immune conditions polymyalgia rheumatica and giant cell arteritis. The two related conditions, the cause of which are currently unknown, drastically impact the quality of life of those affected - from the inability to perform everyday tasks as a result of severely restricted mobility to chronic pain, fatigue and depression. In the case of the more serious condition GCA, catastrophic blindness can occur if it is not diagnosed and treated swiftly and sadly there have been cases of some who, having lost their sight, felt so hopeless that they committed suicide. Typically affecting those over 72, around 1 in 1,000 develop PMR each year. With both conditions little known and poorly understood, PMRGCAuk is the only charity in existence dedicated to promoting knowledge and awareness amongst the public, with those diagnosed and their families, as well as raising the profile of the conditions with the medical profession.

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

• Support a national network of support groups

• Provide a telephone helpline run by volunteers with experience of the conditions

• Maintain an online forum for peer support

• Produce a free information pack to people newly diagnosed with PMR and GCA

• O��a���e a� a���a� �e�be��� da� ���� ��e�� ��ea�e�� a�d �ac����a�ed d��c�������

• P�b���� a �e�be��� �a�a���e ���ee ���e� �e� �ea� a�d �e�d �e���a� e�a�� a�d �e��e� ��da�e�

• Maintain and up to date website and improved social media

• Distribute information to rheumatology departments and other relevant locations. We raise awareness within the public domain, medical profession and government.

• Conduct national press and media work to increase public awareness.

• Speak to groups of people over 50 and those who work with them.

• Attend meetings with health professionals and NHS England

• Advocate for fast and effective diagnosis and treatment to prevent sight loss resulting from undiagnosed GCA

• We support and promote research into PMR and GCA

• Provide patient representation on international working groups, such as those to develop new guidelines for the management of PMR and GCA

• 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 staff 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, particularly for the more informal meet ups.

The Bedfordshire Support Group met at Frosts, Willington, on the last Thursday in the month from November onwards. There are ten members and one has been off prednisolone for a year and another is now down to 0.5mg.

The Brighton Support Group zoomed every six to eight weeks and had a really positive time chatting to each other, having formed quite a close bond since March 2020. They contemplated a face-to-face meeting at the pub they used to meet at during 2021, but with the huge rise in Covid cases in Brighton, they postponed meeting face-to-face and continued to meet on Zoom. The group finally met face-to- �ace� �� Feb��a�� a�d �e�e a��� ����ed �� Z��� b� ����e ��� c���d��� �a�e ���

The Cambridge Support Group are yet to set up face-to-face meetings. When the group resumes, they hope to welcome the two new members who joined just before Covid set in.

The Coventry Support Group members who opted to receive them continued to receive weekly ��a�b������ e�a��� �� om the group organiser. These often develop into individual one-to-one emails. The group did not meet face to face during 2021/22.

The East Midlands support group - some members met up for coffee and other members, who have kept in touch over Zoom, might join them when they are ready. However due to the wide geographical spread of members, which makes it difficult to organise meetings. The group closed down during 2021/22 but we hope to set up some smaller groups in Derby and Nottingham.

The Harrow/Pinner Support group met via Zoom on monthly basis for much of the year, and generally around 11 attended the meetings. They talked about personal experiences and share local issues eg. vaccination centres, osteopaths, local Zoom talks, as well as tips and gadgets on making life easier. They finally met once again at an outside café on a lovely, sunny August day. There were six members present and they discussed meeting again in their regular hall. They devised a policy together to ensure everyone would feel safe. Nine members finally met face to face in September at their usual venue. they spent time reconnecting with each other and discussing personal experiences and updating on all things PMR and GCA. They decided not to offer refreshments but will be reviewing that for future meetings. The group met in January and discussed the different side effects of steroids and how they manage them. Over 15 different side effects were discussed and ways people try to overcome them including things to avoid � some more successful than others. They also discussed the possibility of starting a new group in nearby Ruislip.

– Kent Support Groups Whitstable, Orpington, Dartford, Maidstone and Sevenoaks, Tunbridge Wells and Tonbridge.

We are delighted to let you know that there has been lots happening throughout Kent. Some support groups, understandably, took things slowly as we opened up after the pandemic. Others, for example, the Whitstable Support Group , were able to meet up in person. They had a meeting to restart this group and welcomed 10 members in person in late June. They had a mix of old and new members, and the group was full of ideas for future meetings. Everyone was enthusiastic and delighted to meet others who could really understand some of the challenges they have been facing. We have a new group organiser, who has already arranged several meetups including a very

successful webinar. The Whitstable Support group also had a Christmas lunch for early December. In Feb��a�� �he� �a�ched P��fe���� J���i� Ma����� �a�� � recorded from our AGM 2021) and heard from an NHS Physio in March. The Maidstone Support Group kept in touch via monthly emails and phone calls since Covid began. They shared problems related to PMR and GCA and also family news, knitted chocolate orange covers for a Christmas family get together and passed on tadpoles in exchange for plant cuttings! The Orpington Support Group �� ����h�� Z��� �ee�i�g� c���i��ed a�d �he� �e�� i� touch via a WhatsApp group. Five of the group enjoyed a walk in early May. The group finally restarted their meetings in person and enjoyed a reunion after many months of being unable to meet face to face. They welcomed a new member who developed GCA during the pandemic, which had been a difficult experience for them. The group watche d a �ec��di�g �f P��fe���� J���i� Ma����� �a�� f��� �he ���� Me�be��� Da� a�d ha�e a���ecia�ed bei�g ab�e �� �ee� �� �� �ha�e �hei� �e�� and have been arranging to meet each other outside of the group for coffee or exercise. They continued Zoom meetings t �� �hich �a� ��e� �� a�� cha�i�� �e�be� �h� d�e���� ha�e a ��ca� group and would like to join in. The Dartford Support Group is a new group set up this year. We have a new group organiser and a venue and the support group covers Bexley, Dartford and Gravesend. The Dartford Support Group had a Lions Club International speaker for their March meeting who talked about their Message In a Bottle scheme (MIAB) and also donated money to the group for support in venue hire and refreshments. The first meeting of the new Sevenoaks, Tonbridge and Tunbridge Wells Support Group welcomed six members at the White Hart pub in Sevenoaks in January. They enjoyed a good chat with lots of ideas for future meetings. They are currently alternating venues to accommodate the wide area from which members are coming.

Southwest support groups

The support groups from Taunton, Portishead, Bristol and Bath met up together on Zoom every other month. When new people contacted the group, they were offered a chat on the telephone to discuss their health and advise them of the support that is available from the charity. The call is usually for about an hour. Sadly, the Bath Support Group group organiser had to step down for personal reasons and so far there has been no-one able to take over. There is still a big need for Bath group members to be supported and so our Southwest Coordinator and a charity member temporarily agreed to lead the meetings alternately every other month (Covid permitting). The Truro Support Group held an enjoyable Christmas Lunch at Truro Golf Club in December. Unfortunately, the group organiser broke her ankle in February and so the monthly meetings were put on hold.

The Oxted Support Group has been meeting for approximately seven years and have found a permanent home for their meetings in the local cinema which works very well: good coffee, comfy chairs and so far, quiet for everyone to hear.

The Southend/Chelmsford Support Group had their first face-to-face meeting in October with an attendance of 18 including four new members. Professor Dasgupta gave a very interesting and informative talk. The Southend/Chelmsford Support Group held a special meeting in February to remember the advances that have been made in patient services for people with PMR/GCA; to recognise the work that Professor Dasgupta has done in Southend and beyond, and to also celebrate that Southend/Chelmsford group has been running for 15 years. Eminent rheumatologists from around the world who had worked or studied with the professor submitted presentations to be shown at the meeting. Live talks were given by the professor, Madeline Whitlock, and Alwin Sebastian (who recently did his scholarship at Southend and now works in Limerick). In attendance were Hannah Padbury, who founded the Southend group, 48 group members along with the Chelmsford Mayor, Cllr. Jude Deakin and the Deputy Mayor, Cllr. Linda Mascot. Many others were

also able to join via Zoom. This included representatives from PMRGCAuk, group organisers, Southend/Chelmsford group members who could not attend the meeting in person and many of the doctors who had made presentations: from the Mayo Clinic USA, Mumbai, Bangalore, Netherlands, Milan, University Hospitals in Warwickshire and Anglia Ruskin University, Chelmsford.

The Trent Valley Support Group . As a new group, and a small one at that, it was challenging getting Zoom meetings up and running. However, Janice Maddock (trustee) attended a couple of their initial meetings with much wanted support and they now have three new members. In June they finally met face-to-face in the group organisers garden for coffee with scones, with jam and cream. The group had a second face-to-face meeting in September at a very nice waterfront pub/restaurant, where they were happy to accommodate the group for coffee, with five members plus one husband.

The Welwyn Garden City Support Group continue to meet online via Zoom as many members have comorbidities and continue to feel vulnerable or do not wish to travel to meetings.

The Worthing Support Group met every six to eight weeks and currently have 13 members, four of whom have joined in the past this year. They met in a local café in December, but in January decided to meet via Zoom. However, most of their members prefer to meet face-to-face so met face to face from March.

The Yorkshire Support Group has remained meeting regularly via Zoom, and new people have joined the group. When they finally meet up in person, they will keep their Zoom meetings going too for those who are unable to travel. At the May meeting, Laura Smith of Leeds Mindfulness Co-operative ran a session on wellbeing which was extremely beneficial. They had their first face-to-face group meeting in almost two years in November. This was at the John Lewis Community Hub in Leeds and about eight people attended. One of their members kindly volunteered to meet up for an informal chat and coffee for anyone in the Ke�da� a�ea� T�e�e a�e ���e ��� ca��� ��a�e� �� d���� �e� fee� �� �� time to meet up in a public place due to where they are in their PMR/GCA journey. In January, they hosted Dr Sarah Mackie who gave a talk via Zoom on PMR diagnosis and treatment, and her recent research, PMR Voices, that some of the Yorkshire group members had contributed to. Members and volunteers from the PMRGCAuk helpline and staff from head office attended the meeting.

The WedPM Zoom Support Group (an online group) meets monthly. The meeting topics follow a �����a� �a��e�� �� O�������� S������ G������ �����a��e� I� Feb��a�� ��e� �ad a ���e�� d��c������ af�e� �a�c���� P��fe���� Ma����� �a��� a�d ��e dead ������ea��� ���� ��e���d �a�e���� �e���d �a� circulated.

Part B Report from PMR-GCA Scotland