Reg. Charity No: 1128723

SEEING IT THROUGH TOGETHER

Annual Report and Accounts 1 April 2017 - 31 March 2018

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CONTENTS

Review of the Year A Message from the Chair of Trustees 3

Providing Support 4-5

Raising Awareness 6

Providing Information 7

Promoting Research 8

Rheuma Research Roadshow 9

Membership 10

Annual Accounts Treasurer’s Report 11

Independent Examiner’s Report 12

Summary and Balance Sheet 13-14

Acknowledgments 15

Appendix 1 About the Charity 16-17

Appendix 2 Reports from Support & Meet Up Groups 18

Report from PMR-GCA Scotland 25

Report from PMR & GCA NE Support 26

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A message from the Chair of Trustees, Penny Denby

We are delighted to announce that 2017-18 has brought continuing growth, positive achievements and new opportunities for PMRGCAuk. Highlights included:

PMRGCAuk is a small national charity - but size is not everything! Our work has developed over the past 10 years and we have become a leading charity for anyone affected by the conditions. PMRGCAuk is:

a comprehensive source of information

a listening ear when you most need it

a campaigning voice determined to improve diagnosis and treatment

a place to know and get together with others who really understand the impact PMR and GCA can have on your life

My three years as Chair has been an enriching experience. I will remain a Trustee focusing my efforts now on raising funds to ensure that the charity continues to be able to extend its reach and support. I am delighted to hand the baton of Chair of Trustees to Professor Humphrey Hodgson. I know that the future of the charity will be secure in his hands. I would like to say a special thank you to all those who generously give their time, energy, skills and donations in contributing to the charity’s success. Without your enthusiasm and dedication, we would not be where we are today. We hope you find our annual report stimulating and informative, and we look forward to your continuing support and involvement in PMRGCAuk’s future growth and achievements. With best wishes

Rheuma Research Roadshow events across the country

Growth of the Support and Meet Up Groups network

The first ever PMRGCAuk Week

Licensing of tocilizumab for some cases of GCA

Expansion of membership

Development of a steroid tapering application

Launch of our video channel

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PROVIDING SUPPORT

NATIONAL TELEPHONE HELPLINE

Our national telephone helpline provides emotional and practical support. While it does not offer medical advice, it provides a highly-praised service, invaluable for those who feel isolated and afraid after receiving their diagnosis, or who want to see if what they are experiencing is ‘normal’. The helpline volunteers continue to speak to more than 40 people per month on average. This tends to peak after newspaper articles or television coverage which highlights PMR, GCA or the charity. There are currently seven volunteers giving up their time to answer calls. The volunteers all have experience of taking steroids for PMR or GCA, or first-hand experience of caring for someone with the conditions.

“PMRGCAuk helped me to hold things together when I felt my life was falling apart.”

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SUPPORT GROUPS AND MEET UP GROUPS

In the past year seven support and meet ups have opened, bringing the total across the country to 37, supporting more than 1,500 people. Meetings include a range of informal discussions and formal events with expert speakers on topics such as diabetes, exercise, medicines and other treatments. For a taste of what has been happening across the country in individual groups, please see appendix 2. With help from our volunteer Group Organisers we hope to continue the growth of local groups so more people can get together with others to share the journey.

HEALTHUNLOCKED FORUM

The PMRGCAuk HealthUnlocked forum is an online patient-led community. Members share their experiences and provide peer support. It is particularly helpful for people who cannot get to a support group, or prefer online discussion to telephone support. It is moderated by PMRGCAuk volunteers. By the end of the year, the forum had almost 7,000 members who have shared 10,714 messages. During a typical month, there will be over a quarter of a million page views on the forum.

“I have had so much help and support from this site. The forum seems to have an answer to almost every question. Lovely people.”

“I was so pleased to find a support group, as I felt as though I was the only person who had PMR/GCA!”

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RAISING AWARENESS

AMBASSADORS

Awareness-raising has continued in Hillingdon and further afield, with talks aimed at people over 50 and those who work with them. Trustee Janice Maddock has spoken to in excess of 150 people through a variety of audiences and has had an article published in ‘Hillingdon People’ magazine which goes to every resident in the borough. From a show of hands at each event we still estimate that less than 10% of people have previously heard of PMR or GCA. Janice is now recruiting new Ambassadors who would like to speak in their local communities.

PMRGCAuk WEEK Our first PMRGCAuk Week in June 2017 was a great success, with members and their friends and family around the country raising funds and awareness for the charity. There were raffles, coffee mornings, bring and buy sales, some members knitted beautiful flowers to sell as brooches and member Elizabeth Mitchell took on a 10-mile sponsored walk.

“I undertook a 10 mile sponsored walk in The New Forest as part of the PMRGCAuk Charity Week. I was diagnosed with PMR and GCA in July 2015 and have received enormous support from this charity in many different ways, which has really helped me to deal with these life changing conditions.”

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PROVIDING INFORMATION WEBSITE AND INFORMATION PACKS This year we have made a digital copy of the information pack available to website visitors, resulting in more than 450 packs being downloaded. We have also produced a new ‘symptoms’ leaflet to help medics and the public recognise signs of PMR and GCA, and aid quick diagnosis. The charity Facebook page continues to grow with an increase of 14% this year to 3,024 likes and our Twitter account has increased its following by 19% to 791; through Twitter we connect with the medical profession and other organisations working in same field.

STEROID APP

Volunteer Sandra Isitt has developed a steroid taper web application as a project for her Bachelor of Science Honours Degree in Computing & IT. The app is a resource that stores copies of steroid taper plans which can be viewed online or downloaded. Users select a taper and the app creates a personalised schedule for them. The application can be accessed at http://steroidtaper.com

“PMRGCAuk transformed my life when I developed GCA and PMR.

With their support, I was able to carry on working and

look after my child, then 12.

It made such a difference to be with others like me and get the latest medical information.

Thank you PMRGCAuk!”

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PROMOTING RESEARCH

NICE CONSULTATION INTO TOCILIZUMAB

A major achievement of the charity this year has been our representation of GCA patients in the consultation by NICE, the National Institute of Health and Clinical Excellence, on the approval of Tocilizumab (TCZ) for use in refractory and relapsing cases of GCA1. There was a strong swell of clinical opinion that a new medication was needed for people with GCA who either cannot take steroids or for whom the steroids don’t work. However, in spite of a successful international clinical trial (the GiACTA trial), and TCZ being licensed in the US and Australia, there was only scant hope that NICE would approve its use in the NHS. PMRGCAuk worked hard to mobilise medical opinion and also to encourage patients to make their own submissions on the NICE website. In the event, TCZ was approved for limited use. We feel that this is a real breakthrough - the first new drug specifically for GCA in 70 years.

PROFESSIONAL MEMBERSHIP Charity representatives attended the BSR Rheumatology Conference in Liverpool this year to launch our free Professional Membership. Rheumatologists, researchers, nurses and physiotherapists were among those who visited our stand to order information resources and find out how PMRGCAuk could help their patients or how they can support the charity.

1 The term refractory means a case that does not respond to conventional medications, in this case steroids.

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RHEUMA RESEARCH ROADSHOW

EVENTS

The Research Roadshows project, funded by the Wellcome Foundation, has continued very successfully with a total of nine roadshows completed by the end of March 2018. These included Southend, Bristol, Keele, Leeds, Birmingham, Cambridge, London, Scotland (Fife), and Newcastle. Further roadshows in Peterborough and Portsmouth followed in early summer 2018. The nine roadshows in 2017-18 were attended by a total of 500 people, made up of patients, partners and carers, with 28 researchers presenting. Evaluation has been overwhelmingly positive.

VIDEO CHANNEL

An ongoing and enduring product of the roadshows project is that PMRGCAuk now has its own channel on the web-based video platform Vimeo. Short educational videos, from presentations made and recorded at the roadshows, are being edited and uploaded to the channel for public use. We believe that they will be particularly useful as discussion stimulation material for support groups, but also a valuable new medium for patient information. Vimeo has been adopted in preference to YouTube because it does not use advertising: https://vimeo.com/channels/pmrgcauk

“Where would we be without PMRGCAUK? Thank you for your help and knowledge!”

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MEMBERSHIP

Members are at the heart of our work – a growing group of people who play a part in everything we do – and who are determined to make sure that no-one faces the pain of PMR and GCA alone. We ended the year with more than 850 active paid-up members representing a 12% increase from last year. At just over £1 a month annual membership is excellent value. Members are the first to hear about developments in treatments, special events round the country and opportunities to take part in research projects. They receive NewsWire magazine three times per year and an invitation to the annual Members’ Day.

MEMBERS’ DAY AND AGM

The 2017 Members’ Day and AGM was attended by more than 80 people and in addition to small group discussions and plenty of time to meet fellow members, the event featured two guest speakers: Dr Jo Robson, consultant senior lecturer in rheumatology at the University of the West of England, Bristol and Anne O’Brien, senior lecturer in physiotherapy and director of learning and teaching in the School of Health and Rehabilitation at Keele University.

“I would never have got through the last two years without you. Thank you with all my heart.”

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TREASURER’S REPORT

INCOME Income this year was £91,657, of which £54,148 was a legacy from the late Stella and Jack Satchel which is restricted to spend on new projects. The balance income was £37,509 from subscriptions, donations, fundraising events, Christmas card sales and supporters’ fundraising activities. This was lower than last year (£43,557) as we had the benefit of our Talk and Tea at the House of Lords event in 2017. The staff and trustees continue to work on ideas for raising funds in future.

EXPENDITURE Expenditure was £63,729, of which £23,274 was spent from restricted funds, leaving the balance as £40,455 which is slightly above the general funds expenditure in 2017 (£39,106).

Expenditure from restricted funds Claire Jones was employed to specifically assist groups around the country. Her salary and costs of the outreach programme were paid for by two large donations given specifically for that purpose, plus funds designated by trustees from the cash reserves, a total of £10,002. Kate Gilbert continued to lead the Rheuma Research Roadshow, funded by Wellcome Trust and £5,990 has been spent this year from the grant. The implementation of a new comprehensive database was paid for from our recent legacy, at a cost of £7,282.

NET MOVEMENT IN FUNDS The net movement in funds for the year is £27,928 against £14,735 last year. However, £30,874 of this is in restricted funds leaving a deficit of £2,946 in the general fund this year. This is satisfactory given the surplus of £4,994 in 2017 and the decision of the trustees to spend some of the overall cash balance on charitable activities, which is very much in line with the constitution of the charity.

BALANCE SHEET The charity has £74,092 in funds carried forward, split between £17,225 in general funds and £56,867 in restricted funds. Cash funds are £73,871 and are split with £17,938 general funds and £55,933 in restricted funds. The charity maintains a cash reserve of 3-6 months running costs, in line with charity policy set by the Trustees, and Charity Commission guidance.

Charity No

(if any)1128723

Period start date 1.4.2017 To 31.3.2018

Recommended categories by

activity Gu

ida

nce

No

tes

Unrestricted

funds

Restricted

income

funds

Endowment

funds Total funds

Prior year

funds

£ £ £ £ £

Incoming resources (Note 3) F01 F02 F03 F04 F05Income and endowments from:

Donations and legacies S01 27,308 54,148 - 81,456 50,393

Charitable activities S02 6,455 - - 6,455 12,654

Other trading activities S03 3,737 - - 3,737 1,372

Investments S04 9 - - 9 10

Separate material item of income S05 - - - - - Other S06 - - - - -

S07 37,509 54,148 - 91,657 64,429

Resources expended (Note 6)Expenditure on:

Raising funds S08 9,681 - - 9,681 12,049

Charitable activities S09 21,103 23,274 - 44,377 26,767

Separate material item of expense S10 9,671 - - 9,671 10,878

Other S11 - - - - -

S12 40,455 23,274 - 63,729 49,694

S13 2,946- 30,874 - 27,928 14,735 Net gains/(losses) on investments S14 - - - - -

S15 2,946- 30,874 - 27,928 14,735

Extraordinary items S16 - - - - -

S17 10,002- 10,002 - - -

S18 - - - - - Other gains/(losses) S19 - - - - -

S20 12,948- 40,876 - 27,928 14,735 -

Reconciliation of funds:

S21 30,173 15,991 - 46,164 31,429

S22 17,225 56,867 - 74,092 46,164

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Total

Net movement in funds

Total funds brought forward

Total funds carried forward

Total

Net income/(expenditure) before investment

gains/(losses)

Net income/(expenditure)

Transfers between funds

Other recognised gains/(losses):

Gains and losses on revaluation of fixed assets for the charity’s own use

PMR GCA UK

Annual accounts for the period

Section A Statement of financial activities

Gu

ida

nce

No

tes

Unrestricted

funds

Restricted

income

funds

Endowment

funds

Total this

year

Total last

year

£ £ £ £ £

Fixed assets F01 F02 F03 F04 F05

Intangible assets (Note 15) B01 - - - - - Tangible assets (Note 14) B02 - - - - - Heritage assets (Note 16) B03 - - - - -

Investments (Note 17) B04 - - - - - Total fixed assets B05 - - - - -

Current assetsStocks (Note 18) B06 - - - - -

Debtors (Note 19) B07 2,353 - - 2,353 1,771

Investments (Note 17.4) B08 - - - - -

Cash at bank and in hand (Note 24) B09 17,938 55,933 - 73,871 47,283

Total current assets B10 20,291 55,933 - 76,224 49,054

Creditors: amounts falling due within

one year (Note 20) B11 2,132 - - 2,132 2,890

Net current assets/(liabilities) B12 18,159 55,933 - 74,092 46,164

Total assets less current liabilities B13 18,159 55,933 - 74,092 46,164

Creditors: amounts falling due after

one year (Note 20) B14 - - - - - Provisions for liabilities B15 - - - - -

Total net assets or liabilities B16 18,159 55,933 - 74,092 46,164

Funds of the CharityEndowment funds (Note 27) B17 - - -

Restricted income funds (Note 27) B18 - 56,867 - 56,867 15,991

Unrestricted funds B19 17,225 - - 17,225 30,173

Revaluation reserve B20 -

Total funds B21 17,225 56,867 - 74,092 46,164

Signed by two trustees on behalf of all the

trustees

Date of

approval

dd/mm/yyyy

Section B Balance sheet

Print NameSignature

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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 thrifty. Many of those seeking information and support from us do not realise PMRGCAuk has no real office. We work virtually. Our address is a mailbox. Members of staff and trustees work from home offices. You can rest assured that we spend every penny wisely. Our special thanks go to the Wellcome Trust for supporting the Rheuma Research Roadshow. Finally we would like to thank our members, whose interest and support makes our work relevant and worthwhile and whose feedback drives us to improve and ensure we provide the services that are most needed.

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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: Penny Denby (Chair) Dorothy Byrne (Deputy Chair), Professor Humphrey Hodgson (appointed 11th April 2018), Janice Maddock, Wendy Morrison, Christine Young, Lady Wendy Levene (resigned 7th February 2018), Dr Sarah Mackie (resigned 11th April 2018), Keith Slater (appointed 13th June 2018) Honorary Treasurer (April 2017 - March 2018): Andrew Osborne Independent Examiner: Derek Peter President: Professor Bhaskar Dasgupta Patrons: Lord Robin Butler, Lady Wendy Levene, Dr Sarah Mackie Staff (April 2017 – March 2018): Kathryn Busby (Director), Laurene Brooks (Membership Secretary), Claire Jones (Outreach Coordinator), Kate Gilbert (Rheuma Research Roadshow Project Lead), Anne Hulbert (Bookkeeper).

Structure, governance and management

The charity’s governing document is its Memorandum and Articles of Association, which together form the constitution. The charity is a company limited by guarantee, which incorporated on 2nd December 2008, and became a registered charity in March 2009. The constitution designates the methods to be adopted for the appointment of new trustee/directors who together form the charity’s governing body, the board of trustees. Policy decisions are taken by the trustee/directors as a collective at quarterly board meetings. PMRGCAuk works in collaboration with several other organisations toward the fulfilment of its aims and objectives. These other organisations include Arthritis and Musculoskeletal Alliance (ARMA), British Society for Rheumatology (BSR), Royal National Institute for Blind People (RNIB), British Health Professionals in Rheumatology (BHPR), Arthritis Research UK, Fight for Sight, European League against Rheumatism (EULAR), Birmingham Arthritis Resource Centre,

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Vasculitis UK and Arthritis Care. It works in partnership with two other independent charities dedicated to PMR and GCA, PMR&GCA UK North East Support, and PMR-GCA Scotland.

Objectives and activities The charity’s objects 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 and meet up 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 ● Organise an annual Members’ Day with guest speakers and facilitated discussion groups ● Publish a members’ magazine three times per year and send regular email updates ● Maintain an up-to-date website and social media presence ● 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 Ministers, members of the House of Lords 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

● Run the Rheuma Research Roadshow, supported by the Wellcome Trust ● 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

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APPENDIX 2

Part A – reports from local support groups and meet ups Coventry Meet Up Whilst we have twenty one registered members our average attendance at meetings is eight; life gets in the way, sometimes! The visits of three guest speakers have provided the highlights for the year, as we have welcomed a rheumatologist, a physiotherapist and an optician / ophthalmologist. It can be both stimulating and reassuring to hear from specialists with knowledge of PMR and GCA and we have greatly appreciated their willingness to answer questions. East Midlands Support Group We had our first meeting in February 2018, attended by five of us. We shared our experience of our PMR/GCA journeys. Our second meeting involved nine of us, again sharing our experiences, and we had a talk by Annabel Kingsbury, a specialist physiotherapist with extensive experience who gave a thought-provoking talk. As we were constrained by the size of the room, Annabel has agreed to come to our next meeting in September and do a practical session. The 17 people who have expressed an interest in attending our meetings come mainly from Nottinghamshire, but also South Yorkshire, Derbyshire and Leicestershire. Ilkley Meet Up This year has been our first full year of meetings, having started the group in May 2017 after the two group organisers met at the Leeds Rheuma Research Roadshow. The group met every three months, either in Ilkley or Leeds. The Leeds venue makes travel easier for some, even though the weather blighted our December and March meetings! We have 22 members on the mailing list living in West, South and North Yorkshire and Lancashire, and between 5 and 8 of us have met each time. The meet-ups are informal, giving everyone an opportunity to chat and exchange information. We encourage members to support PMRGCAuk and tell those who don't know about the forum on Health Unlocked. We are open to suggestions from the members regarding the format and content of the meetings and over the next year we hope to have speakers both from within and outside the group. Kent Groups There are three groups within Kent: Maidstone, Orpington and Sevenoaks. The first two are now fully-fledged support groups with monthly meetings. Both groups have speakers on alternative months when possible. During 2017 speakers have included a pharmacist, MHRA - yellow card, an optician and a physiotherapist and we have someone from DiabetesUK, an osteopath, an osteoporosis nurse and a consultant rheumatologist booked for September and November. As a direct result of the

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physiotherapist talk in Orpington, a weekly clinical Pilates class was started at the physiotherapist surgery and a number of members of the group attend. Members come quite a distance to Orpington and Maidstone meetings and it is our aim in 2018 to find volunteers to establish more groups in this large county. Those with PMR and GCA in the Thanet and Medway Towns areas are particularly disadvantaged when it comes to finding an accessible group. We have taken advantage of the videos available on the PMRGCAuk website made following the Rheuma Research Roadshows. The videos were easy to download to a memory stick so they could be shown at group meetings - on a TV at Orpington and a laptop at Maidstone - which gave an excellent focus for further discussions. Hastings in East Sussex and Oxted in Surrey are on the borders of Kent. Hastings has closed due to ill-health of our organiser and we are looking for someone to take on this role. Oxted very successfully meets monthly in a local pub and at Christmas Penny Denby joined the members, some of whom come to Oxted from Kent and Sussex as well as Surrey, for an excellent lunch and meeting. Sevenoaks continues to meet in the coffee lounge at the Stag Arts Centre but is considering moving to a private room there in 2019, so that we can make the most of the Roadshow videos and, of course, invite speakers whenever possible. Maidstone and Orpington have raised funds for the national charity through various ways and both held events during PMRGCAuk Week. Almost all members of Kent groups are also members of the national charity so are aware of all that is happening in PMRGCAuk and further afield. One of our Orpington members was featured in an article on scleroderma, Raynaud’s and GCA. The biggest challenge in Kent is to raise awareness in more rheumatology departments of the value of support groups and to find more consultants who are really, really interested in the two diseases. We need to find a way to work with the hospitals, consultants, rheumatology nurses in the county to raise awareness of the charity and the support it offers to everyone affected by the conditions. London Support Group We currently have about 75 members from a wide area around London and beyond. We meet four times a year, and usually have about 20 – 25 attendees at each meeting where there is a speaker. The summer meeting, a group discussion, is smaller. The Barnet meet-up, run by group member Derek White, which is the first Meet-Up in Greater London, is continuing to run too. In April we had a visit from the Rheuma Research Roadshow, run by Kate Gilbert. Professor Mauro Perretti came to speak – his topic was inflammation and we all understood far more after the talk! In the summer, group member Diane Wloch told us about her attendance at the Vasculitis Symposium in Chicago, USA. For some of us it was the first time we’d had any discussion of the link between our conditions and vasculitis. After this we had our group discussion "Living with PMR and GCA: Stories from the Frontline". In October we welcomed Hoa Hoang, an experienced yoga teacher in London. She explained some gentle ways for people who have had debilitating illnesses to keep supple. She had us all standing actually doing the breathing exercises. It was quite a sight to see 20 or so people all

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standing and breathing! I still use the breathing technique and find it really helpful, especially going up lots of flights of stairs. January saw a return visit by Kate Gilbert, and she talked about what's currently happening to bring research into practice. Pagham Meet Up – a poem by Henry Unseen medical conditions are difficult to explain, Hidden deep within us they constantly remain. We battle and we suffer, every single day. Our conditions are Polymyalgia and also GCA. In Pagham, West Sussex we are fighting back. Coming together monthly keeping ourselves on track. Listening to each over cups of coffee and tea. Occasionally a bit of laughter, the best known therapy. Patricia our coordinator, efficient to the core. Ably assisted by Maureen, who could ask for anything more? Eamonn and Helen treasurers keeping hands upon the till. Julia constantly taking notes, life never standing still. As John became unwell, Chris took over the reins, Coping with the register easing everyday strains. These wonderful different people helping to assist our clan. We thank them most sincerely, they are the folk who can. When we have our cuppa there are biscuits of every make Nicely sliced on a plate, apple and cinnamon cake! By being with each other helps us all to cope The PMRGCA Group in Pagham is certainly a beacon of hope. Port Solent Meet Up Port Solent Group met for the first time just over two years ago, on 26th June 2016 to be precise. It was thanks to two local ladies, Valerie and Yvonne, who discovered on Health Unlocked that they lived nearby - and then I discovered them too! Chris Young, our Mentor, suggested setting up a meeting place locally and contacted several people and here we are, having bi-monthly social meetings with 10 – 20 lovely members. We are growing and this has resulted in recognition from our local hospital Queen Alexandra (QA), who have kindly offered us many facilities as well as venue. We all joined together at QA in June with Kate and the Road Show, which was well-attended and very informative. So now we have medical and social meetings. We are a friendly, supportive group, and greatly appreciate the additional opportunities that the group has received from QA. We hope other groups receive similar support all over the UK.

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Southend and Chelmsford Support Group We have only had one Southend Group meeting this year which was held in April, at which we had several new members. Our guest speaker was Billy Fashanu, Consultant Physiotherapist, Southend University Hospital NHS Foundation Trust. His talk was very enlightening, giving our members several exercises to help mobility. The Southend Group requested that we hold meetings every six months so our next meeting is planned for October. Realising there was a need to go further afield we have started a group in Chelmsford which was held in the Rettendon village hall. An attendance of over 40 at this meeting proved there was a definite need to have meetings in this area, some of our Southend members also attended. Our guest speaker was Professor Bhaskar Dasgupta, Southend University Hospital NHS Foundation Trust who gave a very informative talk and very kindly answered a lot of members’ questions. The speaker for our next Chelmsford meeting will be Madeline Whitlock, clinical nurse specialist, rheumatology, from Southend University Hospital NHS Foundation Trust. Both of our groups are very friendly and everyone appreciates the opportunity to talk and support each other. South West Groups In the south west, we now have eight groups meeting regularly which is three more than last year. This has only been possible because of the wonderful people who have volunteered to lead and assist with the running of the groups. In some locations the group’s existence is due to one leader and in others a small team. All these people are making a huge difference to other peoples’ lives and I would like to say a HUGE thank you on behalf of us all. Below are the reports from the individual groups. Bath Meet Up We have been meeting monthly for the past year, offering each other mutual support and a listening ear over a drink. Meetings usually have had between 6 and 10 attendees who come from a wide area around Bath and who have both PMR and GCA. Topics of general interest have been steroid reductions and the latest news on research, with some of the group contributing to these projects remotely by completing questionnaires. At one of our meetings Mark Benjamin spoke about his experiences of the psychological impact of suffering from PMR which was well received. The group is currently monitoring the provision of local rheumatology services in our area after one of our members reported that they might be under threat due to financial pressures. So far we have established that services south of Bath are unaffected but remain concerned about services in North Wiltshire and will continue to monitor these. Bristol Meet Up Last year we mentioned that we were hoping to set up a group this year and are very pleased to report that it materialised. On the day the Roadshow came to Bristol, we identified there was a need and four

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people came forward who were interested in the formation of a group. Subsequently they met for a coffee with Wendy Morrison and a Meet Up Group was formed. Several meetings took place at various venues and leaflets were deposited all over Bristol, thanks to Barbara Ingrams and other volunteers. Randa Alshakh, a rheumatology registrar from the Bristol Royal Infirmary, joined us for one meeting and our friends from the Bath Meet Up Group also came along. Randa was a brilliant speaker and she also enjoyed the visit and offered to come and join us again. The group now hold their meetings at the Holiday Inn in the city centre, which is proving to be a good venue where we are well looked after. Camborne Meet Up The group first met in September 2017 at the Premier Inn Camborne (hence the name) and since then we have held monthly meetings at Truro Golf Club. Wendy Morrison, our South West Co-ordinator, visited in November and gave us lots of useful information. The initial membership of nine has grown well into double figures and we have four men among our group. Meetings are not only informative with much discussion of symptoms and medications but also quite jolly affairs. In February, we had a presentation by Mark Benjamin, who discussed his book 'Write Me Funny' which all found helpful and enjoyable. We are the only group in Cornwall at present and our location in the west of the county may limit the number of people with PMR and/or GCA who are able to attend meetings. We already have members from as far afield as Bodmin and the area round Newquay, but people from the north and east of the county will find the distances too great. There is obviously scope for new groups to be formed in those areas if anyone were willing to take them on! Portishead Meet Up After I was diagnosed with PMR in July 2016 I joined the PMRGCAuk national charity & was informed of a Roadshow in Bristol which I attended followed by other support groups in the area. I was asked by one of the charity trustees Wendy Morrison to write an article on my experience/condition with view to setting up a support group in Portishead. The article was printed in a local monthly magazine which raised some response. With the help of my local library I was able to use their foyer in October 2017 to hand out leaflets and ask people if they would like to come to a support meeting. Since then we have held several meetings with 6-10 people attending, some with the valuable help of Wendy. We had the author Mark Benjamin give a very informative, lively talk on his journey with PMR, promoting his book. Plymouth Support Group Keith Bulley led the group from early in the year. A musical evening was held in May 2017 to raise funds and draw attention of PMRGCAuk to the public. In June we had a talk from pharmacist Susana Gomes. In December, Stephanie Clark, Chair of the Plymouth Area Osteoporosis Support Group, was our guest speaker. Aided by mince pies and clotted cream, this was a popular event.

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Keith stepped down as leader for health reasons and Geoff Davis took on the task of voluntary Group Organiser. In March 2018, we welcomed Mark Benjamin, author of ‘Write Me Funny – the lighter side of PMR and GCA’, who inspired us with his experiences, noting the positive aspects of the condition we share. Speakers have been invited to other meetings later in the year. Salisbury Meet Up We have had an interesting year with several new members as well as the "Old Regulars". We seem to have an interesting mix of members, with an unusual number of GCA v PMR and several younger ones (early 50s). Also several men and long term sufferers, at least two of 15 years to date! Unfortunately, our fundraiser Elizabeth Mitchell had a horse riding accident just before attempting her sponsored skiing run but is hoping to reschedule this when she recovers. Several of the group attended a talk by local rheumatologist Richard Smith, where we learnt more about osteoporosis and how to avoid it. Taunton Group This was the first group established in the South West and has been running very successfully for many years thanks to an established team. This year however, Judith Morris and Sylvia Sealey have needed to reduce their involvement. Quite simply the group could not have run without them over the years and they have given so much time and effort to make things work smoothly. We are very fortunate to have been joined this year by Margaret Browning as treasurer, Jane Evans as secretary and Janet Hagley as social secretary who, with Sue Newberry and Wendy Morrison, are now the local team. In May, Taunton were pleased to welcome Dr Joanna Robson BSc PhD MRCP, who is a consultant senior lecturer in rheumatology from Bristol. In July our speaker was Jenny Chamberlain, a rheumatology physiotherapist. A representative of the Yellow Card Scheme visited in September. Lead rheumatology specialist nurse, Teresa Jewell, joined us for her annual visit in October. In March we were joined by Dr Mahdi Abusalameh, consultant in rheumatology and acute medicine from the Royal Devon and Exeter Hospital. We are fortunate that so many professionals are willing to give up their time and share their knowledge, we owe them a great debt of gratitude. This year we again met every month except January at the Harvester for coffee except the months when we had a speaker meeting. These meetings are still very popular. Torbay Meet Up The group is run by Trish Galli who is also a volunteer on the Helpline. We continue to meet every 3 or 4 months and usually 12 to 14 attend. A few of the regulars value the group so much that they are promoting us in their local areas, which is very helpful. In addition to the regular attendees some people come to a couple of meetings to obtain information and become more confident to manage their condition without the need of regular support. We continue to meet every 1-2 months, occasionally attending the new Bristol Group.

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Surrey Group Now into its eighth year, the Surrey group meets every two months at its venue in Chertsey, Surrey, continuing to attract people from areas outside Surrey, including Hampshire, Sussex and with one long-standing member travelling from Kent. With partners and carers also welcome, average attendance at meetings is 30. Whilst some members have been with the group since its inception in 2011, we continue to welcome new members. A very friendly group and it is clear from the support we share with each other just how valuable such groups are.

Guest speakers during the reporting year included a pharmacist from a local surgery and a representative from the Kent, Surrey and Sussex Air Ambulance Trust who gave a most interesting talk on the wonderful work of the Air Ambulance. A member of the group had very kindly baked a variety of cakes in a fundraising effort for the Air Ambulance. Their representative was delighted when presented with the £42 raised and the delicious cakes went down well, too! The group look forward to another year of getting together to share experiences and learn from each other, and to hear from guest speakers, the first of the new reporting year being a representative from Diabetes UK. Worthing Support Group From January 2018 the Worthing group moved the venue for its meetings to the Durrington Community Centre, which everyone agreed was an improvement. The frequency of meetings also increased from every two months to monthly, which was preferred by most members. The meetings are mainly informal with information sharing and discussion. We hope to invite speakers in the future.

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Part B – reports from associate charities PMR-GCA Scotland, Registered Scottish Charity No. SC037780 www.pmrandgca.org.uk In 2017/18 PMR-GCA Scotland's main objective was to continue to raise the profile of GCA and to advocate a Fast Track approach to its diagnosis and treatment, while maintaining support for our members and others through our 7/7 Helpline, Website, email and regular Support Group meetings. Early in 2017, we were asked to assist Dr Jane Gibson and the staff at Whyteman's Brae Hospital, Kirkaldy in producing a holistic treatment pathway for those with PMR, GCA or both. The Chair spoke to the Rheumatology staff, then a group of members attended a training day in St. Andrews in June, where they described their personal experiences of living with PMR and/or GCA. This was used to produce treatment pathways for both PMR and GCA, including a pathway for flare. In November a group of supporters heard Dr Gibson present her work to a meeting of the Parliamentary Cross Party Group on Arthritis and Musculoskeletal Conditions at Holyrood and show how fast-tracking patients in Fife with suspected GCA had reduced cases of sight loss so far this year to zero. It was agreed that the CPG should send a letter to the Health Secretary encouraging support for this approach and asking for Scottish figures on sight loss due to GCA. This was done in January 2018. Unfortunately the response was not satisfactory, showing little awareness of the condition and significantly underestimating its prevalence. The correspondence continues. Each year members from the Dundee Support Group attend the Angus Health Fair in September. They use a stall to engage with members of the public and make the most of the networking opportunities with other charities and healthcare organisations. This has led to a request to provide speak at meetings of Angus Long Term Conditions Support groups in both Montrose and Carnoustie in 2018. Our close alliance with PMRGCAuk, and again the support of Dr Jane Gibson in Kirkaldy, allowed us to benefit from a visit from the Rheuma Research Roadshow, a project funded by a grant from the Wellcome Trust and led by Kate Gilbert from the UK charity. On November 1st 2017, in the Victoria Hospital, Kirkcaldy, a large audience of medical professionals in the morning followed by an even larger public meeting in the afternoon, learned about both PMR and GCA and were brought up to date with our understanding of these illnesses and advances in their treatment. Another objective, that of support for all those affected by PMR or GCA, was progressed by setting up a Support Group to cover Highland Region. The inaugural meeting was held in Inverness on 27th September 2017. The Highland Group's existence has increased the charity's profile and membership in the area, not least by an article by the Convener published in the local press. As always our Helpline volunteers, Support Group Conveners and Trustees, especially those who hold the offices of Treasurer and Secretary, make the year's activities possible, as do the members who support our work in so many ways, not least in being there for each other to give advice, sympathy and encouragement whenever and wherever we meet.

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PMR & GCA UK North East Support, Registered Charity No. 1138409 www.pmr-gca-northeast.org.uk NOW: 2017 - 2018 has been an eventful year for 25 people, more of that later. Margaret Wright, a founder member, trustee, good friend and someone we relied upon retired as Vice Chair and trustee in March 2018 after delivering our 'Tin' (10th) Anniversary buffet the day before, a very special occasion. We welcomed two of our patrons Dr Saravanan, MBBS FRCP (consultant rheumatologist and founder member of our charity) and Sister Jacqui Binding (rheumatology nurse). Dr Clive Kelly, who instigated the research on 'Your Ears' which many of the people reading this participated in, thanked them and updated on progress. A good time was had by all present. The NHS research arm is now conducting further research after the basic survey results showed a need for more investigation. We provided £1000 to the NHS to enable this further research to be done. You can find out the ‘why's and wherefores’ by visiting our website and reading the newsletter 'You are Not Alone'. Pam Hildreth, Trustee and Secretary, decided to set up a Gentle Walking Group over 5 years ago. During those years the people who joined that free walking group decided that they would contribute to the charity that Pam was heavily involved with and so when they walked they donated £1. Many other people have also raised money and especially Jim Aitkenhead who every year has raised money for two charities, ours and Parkinson's UK. Jim's mother had PMR and his father had Parkinson's. Without these people, we would not have been able to make the small contribution to support people and research during the past ten years. THEN: 11 years ago, no charities, no support, bewildered patients. On 14th March 2008, 25 people journeyed to London. Twenty one people had PMR and/or GCA and four who did not have either met in the British Society of Rheumatology headquarters. Those people who came from all over the UK and paid their own way, met with Professor Bhaskhar Dasgupta who paid for teas, coffee, meeting room and lunch. They all decided that now was the time to act decisively. At that meeting were a group of five people, who were known as PMRFighters5. Kate, Pam, Jayne, Wendy and Mavis had met on Patient Info forum in 2007, and then in person in November 2007 and decided what was needed was support, awareness-raising and a charity. Four of the five are still working voluntarily. The rest is history and will be told by someone elsewhere. NOW IN 2018: Three charities whose aims were decided on 14th March 2008. The over-riding aim was 'Support' first and foremost and still is to this day. On our website, those aims are spelt out in full however the first two are below: Our Mission: We offer a support and information service for people diagnosed with PMR and /or GCA and their carers as they meet the challenge of managing a new lifestyle brought about by these conditions. Our Aim: To establish a support network for people which provides an information and a guidance service (under the guidance of our Patron Professor B. Dasgupta and the Medical Advisory Panel) for PMR and/or GCA sufferers and their carers.

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