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2020-12-31-accounts

ANNUAL REPORT JAN - DEC 2020

Registered Charity: 1095416

TABLE OF CONTENTS

TABLE OF CONTENTS
THE CHARITY 2
Registered ofce & contact details 3
Patrons 3
Objectives 3
Trustees 3
Associate Trustees 3
Employees 4
CHAIR’S REPORT 5
SOCIAL AND WELLBEING ACTIVITIES 7
In-person social drop-ins 7
Online activities 7
Phone support 7
Magazine 8
ONLINE ENGAGEMENT AND OUTREACH 9
Social media 9
Website 9
E-news 9
WELFARE AND BENEFITS ADVICE 10
Changes 10
Financial outcomes 10
Overview and feedback from benefts clients 10
Follow up from independent review 11
Welfare rights training for GP trainees 12
Case studies from our benefts and social care clients 12
EVENTS 14
Millions Missing – 12th May 2020 14
Online OctoberFest – 5th to 23rd October 2020 15
Annual General Meeting - 22nd October 2020 15
Discussions on the NICE draft guideline for ME/CFS - November & December 2020 16
Jingle & Mingle online Christmas festival – 14th to 18th December 2020 16
Online talks and Q&A open to all 17
Dr Nigel Speight and the TYMES Trust – 24th September 2020 17
The Workwell Foundation – 22nd October 2020 17
Dr Diane O’Leary – 20th November 2020 18
MEMBERSHIP 19
Overview of our membership 19
New options for getting membership 19
Fees 19

1

VOLUNTEERS 20
Estimated volunteer hours 2020 20
GOING FORWARD 21
APPENDICES 22
Appendix I: OctoberFest festival report 22
Appendix II: Engagement report of our online talks 24
FINANCIAL STATEMENTS 2020 26

2

THE CHARITY

Registered charity: 1095416

Registered office & contact details

Patrons

Objectives

Trustees

Associate Trustees

3

Employees

4

CHAIR’S REPORT

2020, an exceptionally challenging year for everyone. Full stop. But even more so when living with chronic conditions like ME/CFS, fibromyalgia and all the other illnesses that our members contend with. This was the year of Facebook posts helping people find which shops had delivery slots less than 3 weeks ahead, where accessing social care was unbelievably difficult as many staff went off sick, and when those who were familiar with personal lockdown due to illness found they had more resilience than some for whom it was a new shock. Suddenly schools were delivered online, enabling young people with chronic illness to access schooling never before available, students could study from home, pantomimes were accessible online, the

National Theatre was streamed to people’s home. This marked a turning point for inclusion, but set against a backdrop of great fear as the pandemic spread out of control, our NHS was under huge strain but we could hear the garden birdsong like never before.

Our Communications Officer, Harriet stayed on beyond her resignation to help us keep the charity going, and as we recruited both Elyane, to replace her, and Ellie Jones to join Sarah Smith sharing the benefits work, we built a strong and virtual team working from a distance. Group members helped each other out where they could, and we all learnt how to ‘Zoom’. This report shows the fruits of the enthusiasm and creativity brought to the Group by Elyane, her skills in running the charity competently and the breadth of the programme is testament to her hard work. Sarah and Ellie have done an amazing job winning appeal after appeal to ensure members access the benefits and back pay that is their entitlement - it really shouldn’t be this hard to claim what is rightfully yours.

So a huge thanks to everyone who has supported the charity through such an exceptional year - the Trustees who have helped keep the show on the road, the volunteers and students who have come on board and given their time generously, to Berlie Doherty and Peter Bradley as patrons, to Carol Binks for all her help in setting up our talks, and the many many more. I would like to say a special thankyou to Sheila Broadhead who has acted as our treasurer, providing sound book-keeping and financial advice which helps us all feel we are in safe hands.

We’ve done lots this year but also learnt lots, and with the help of everyone, we will continue to build this charity. Thank you all.

Carolyn Leary, Chair

5

DEVELOPMENT OF OUR GROUP

The pandemic has given our Group the opportunity to rethink the way we deliver our services, including our welfare benefits service, and our social and wellbeing activities. In Spring 2020 we decided to move our activities online, creating new opportunities for everyone including our housebound and bedbound members. We have purchased a Zoom license enabling us to organise large events as well as private activities for members. Being online means that more people were able to attend, when they felt too weak to come to venues before. We also took advantage of this to invite international guest speakers to deliver online talks, raising even more the profile of our community.

“Zo�m ���si��� h��e ���n a ���p���e g��� �ha���r ��� me, t�e ��l��� li���g �� t�e ��c���w��! It’s a ���y ���lu���� wa� ��r ��o�l� ��� wo��� h��e �r����m� �it� ��t���in� ��g��a� se����n� a� � v��u� �� jo�� �� so�� ��ti����es ���h � �o���l�� in����c�i�� g��u�.” - R. O., member

In November 2020, our Group was successful in securing the DPO Covid-19 Emergency Fund which enabled us to add 6 hours to each staff member, bringing the communications officer to 36 hours a week and the benefits advisers to 24 hours a week. This additional time has enabled our communications officer, among other things, to organise more online activities for our members. Our benefits advice service has been expanded to support our members with social care advocacy.

In 2020, observing the growing community of people with long term effects of Covid-19, our Group has decided to open up our services to those living with this emerging condition, with symptoms resembling those experienced by people living with ME/CFS and fibromyalgia. We have published articles in local newspapers, created a survey for long haulers to gather their insights about support needs, and published new website content related to long covid.

6

SOCIAL AND WELLBEING ACTIVITIES

In-person social drop-ins

A total of 14 in-person drop-ins were held in January and February 2020 at various cafes in Sheffield, Chesterfield and Barnsley. These allow members to get together near their own homes, chat with others who understand these illnesses and gain support and friendship, thereby reducing the isolation these illnesses can cause. They are run by our volunteers and as the sessions are held in local eateries they present no cost to the Group.

Online activities

Our volunteers and staff have ran online activities through Summer, which were:

Our online activities programme was developed further in October with our very first OctoberFest which included a variety of social, wellbeing and informative activities. More information on the OctoberFest programme and attendance can be found in the Events section. Our Christmas Jingle & Mingle festival comprised more activities that are mentioned in the Events section.

Phone support

Our office phone line was operating all year round, answered by our Communications Officer. Phone calls received included queries about the conditions, our services, benefits support, membership, or sometimes just having a chat with someone who understands.

7

Realising the detrimental impact of the pandemic on the mental health of our members, our staff team endeavoured to reach out to our members via phone calls, to check in on them and make sure they had everything they needed.

Magazine

The Group’s magazine was distributed to all members. It is designed to inform members about ME, Fibromyalgia and the Group’s activities, and also to entertain them, over its usual 24 A4 pages. This year, the Autumn and Winter editions were merged into a big Autumn-Winter bumper edition due to a massive amount of information arising early November, among which was the long-awaited release of the NICE draft guidelines on ME/CFS.

A special thank you to Becca Gransbury, our editor, and to all who contributed.

8

ONLINE ENGAGEMENT AND OUTREACH

Besides the engagement via online activities, our Group has been very active in sharing various informative content via social media, on our website and through our mailing list.

Social media

Facebook is the main source of traffic to our website. Over 52,500 people have seen our page content throughout the year, which is 6 times more than the year before. By the end of 2020, 1,007 people had liked our Facebook page, representing a 61% increase compared to the previous year. Our Long Covid group was created in August 2020 and involved 36 people at the end of 2020. It was at the time an open group reaching out to people with long covid in South Yorkshire and North Derbyshire.

Website

E-news

27 e-news bulletins were sent throughout the year to our members and/or general mailing list. They are emails with information about our Group’s activities and other relevant news from the worlds of ME/CFS and fibromyalgia.

9

WELFARE AND BENEFITS ADVICE

Changes

Financial outcomes

Overview and feedback from benefits clients

10

Follow up from independent review

In December 2019 the Group commissioned Sheffield Citizens Advice Bureau to carry out a review of our benefits advice service using the opportunity created by the retirement of one of the two advisers, and to inform our recruitment.

The report made the following recommendations:

11

In response, we have made the following changes:

Welfare rights training for GP trainees

This year we ran 2 training sessions on welfare rights with GP trainees in Sheffield and Barnsley. The aim of the training was to help GPs be more confident in signposting patients to welfare rights advice services, and identify when they might be able to support patients to access welfare support, for example by providing medical evidence.

45 participants responded to our feedback form

87% found the training ‘very useful’, and 13% found the training ‘somewhat useful’

84% improved their knowledge of the welfare benefits system

Quotes from participants

‘Use��� s���i�n. I fe�� I ��w �a�� s��e ���a �s �� �he�� �� si��p��� p��i��t� �� ne����. un���s���d ��at ro�� � G� ma� ��v� i� ��l���g �i�h ����en��' fina����l ��o�b���.

Ver� ���fu� ��p�� a�d ���s���at���. It i� ��m���in� I �id ��� k��� ab��� �uc� ��f��e��n� ��d �e���se of ��� c���le���y �� �iffic��� t� fi�u�� �ut ��� �e�d���/se��-s�u�y. I wo��� d�fi�i��l� ��co���n� �h�� be����n� a ��g��a�/ro����e V�� se����n. El�i� �r��e�t�� ��l� a�d I �i��d ��� yo� ���e �l�� �oc���� on ��� qu����on� ��d fi��in� ��f���at��� �o� d�� �ot ���� re���’

‘I wi�� d�fi���el� �� t���n� �o �t��i�� t�� i�f����ti�� �r��i��d ��� t�e��b� ��in ���t�� �no���d��. I t�i�k p�a�t��� i� w��� �s �e���d �o�. I t�i�k ���t �� i� � r�a��y ���� to��� t��� G�s �o ���d �o �� �wa�� ��’

Case studies from our benefits and social care clients

1- This member needed help with a PIP MR, she said:

‘The ���g��� ba����r I �a��d �� a�c����n� �el���� be��fi�s ��� un���s���di�� �f ��� s��te� ��d ��e��n� ut���l� ��flat�� ��d �a�r����ed �� t�e ��r���e. I ne���� so����e t� ���p �e ��m���te ���m� ��d �o ��p��i� t�e �r����se� �� m�. I wa� �� s���s�e� f��� t�� �ho�� ��pe����ce I ����d �a�� g��e� �p �� I’d �o� h�� �h� su���r�. The ���r� �a�m���s ���e t���� aw�� �� mu�� s��es� ��d ���s�u��. I ha�� ��en ���r�e� ���ut me����g �i�l� ��d ���ni�� t�� ��us� ��� lo���g ���ep ���� t�e ��c� I �ay ���� to ��� � jo� ��d ���wi�� m� �e�l�� w�u��n’t a���w �� �o’.

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2- This member got covid in May 2020, and has been experiencing ongoing symptoms which affect her ability to manage her day-to-day life. She applied for Personal Independence Payment, but was turned down. Sarah supported her to challenge this decision, and she was awarded the benefit, meaning she is over £80 per week better off.

“ I wa� ��v��� a w����r�u� l��� �ef��� �ov��. I wa�fit a�� w��� �n� �or���g ���l �i�� �s a ����g�� t�a�� d�i��r. I wo���d ���ti�� �� t�e ��g�� �n� �ay ��� 24/7. My �o�b��� i�c����d �i�g���, p�a��n� � �ar����e ho�� (bi� �r��� �n��ru���t) an� ���r�i��n�. Pri�� �� lo��d���, I wa� ��v��� a p����na� �r���i�g ���s�o� ev��� w�e�. Whe� ��c���w� �ta���d �� Ma�c�, I co���n�e� �� w��� fu�� t��� a� � K�y �o���r. I am ma����d, wi�� � 16 ye�� ��d �o�.

Un�o�t����el� I �a�g�� c��i� �n M��. Thi� ��s � �u�� s���k a� I ��s ���y �a��f��. The ����in�� ��fe����n wa� ���te ���d ��� t�e ��s� ��vi� �y��ro�� �� ho���n��u�. It ��ar��� �bo�� 2 we��� ��er ��� �ri����l in���t�o�. It ��ar��� w��� a m����ve ����p�e �� m� ��ig���� s��p�o�s (so�� �h��a�, co���, c�e�t ����, fa����e, lo�� �f ���et���, na���a, b�a�� f�� a�d ���y, ma�� m���). I am ���l� ��c� �it� ��n� �� t�e�� s��p�o�s.”

3- Because of changes in her life, this member needed help with social care. She was supported by Sarah to access a social care package and to be put on the priority list for re-housing because of her health condition.

“I am ���y ���te��� f�� �he ���p��� f�o� Sh�ffi��� ME & Fib���y���i� Gr�u�, es����al�� �v�� �he ���t ye��. I suff�� �r�� ME a�d ���� ha� ��v��a� �s��e� �v�� �he ����s �o� �n�� w��� m� �e�l�� b�� a�s� ���h m� �en�fi�� �n� �et���g ���po�� w��� t�� �iffic����es �� ��r��in� ��� ev���d�� �as��. Sar�� ��d a ���t���ic ��� �f �e�p��� m� �o ��t � �e��s ���es���n� ��ne ���� t�e �h���, an� �h� ���o ar���g�� �or �� �� s�e�� w��� t�e ��g�� p�o��� �t S�effi��d C��� �o�n��� to ���r� ��s�u�s��� f��u�� ac���m��a���n �i�h ��, in���d��� go��� d��� t�e ��d��a� p����it� ���te.”

13

EVENTS

Millions Missing – 12[th] May 2020

Every year we host ‘#MillionsMissing’ as part of a global campaign giving voice to local people's experiences of these devastating conditions and a platform for local MPs who support our demands for more funding for bio-medical research into this much-ignored condition.

This year, we were online on Zoom with many prestigious guests! The line up included interviews with Olivia Blake MP, Paul Blomfield MP, testimonies by local journalist Laura Elliott and member Mhari-Ann, live storytelling, arts and songs by our members, and more.

The live event was also broadcasted on Facebook and attracted over 2,300 viewers. The recording of the whole event was then uploaded on YouTube and generated 150 more views. A Music Fest was organised at the end of the visibility action which generated 4,200 views.

14

Online OctoberFest – 5th to 23rd October 2020

This online festival introduced our membership and beyond to a whole new world of online activities: mindfulness, seated tai chi, singing, writing workshop, murder mystery, play reading, French conversation, as well as a nutrition talk, an introduction to being a trustee, PIP tips and a social. This festival was a real success and boosted attendance to online activities.

84 people made 278 registrations across all the activities. 38% of registrants were members of our Group, 94% were people living with ME/CFS, Fibromyalgia and long Covid symptoms, and 85% were living in South Yorkshire.

As we were planning on continuing online activities in the long term, we took the opportunity of the OctoberFest to gather some precious insights from our members, in a spirit of always working as a group and including them in the decision-making.

The feedback survey comprised:

The OctoberFest received a general rating of 4.9/5 with very positive feedback.

Please see the OctoberFest reporting in appendix I.

Annual General Meeting - 22[nd] October 2020

Our AGM took place on Zoom, before the talk by the Workwell Foundation. 40 members participated in the Zoom event or watched the recording on Youtube.

15

Discussions on the NICE draft guideline for ME/CFS - November & December 2020

The NICE guidelines for the diagnostic and management of ME/CFS had been in place since 2007.

In this guideline, graded exercise therapy and cognitive behavioural therapy were recommended to health professionals dealing with ME/CFS patients. After intense campaigning from the ME/CFS community around the negative consequences of these practices on patients, the guidelines had been put under review and a new draft was presented in November 2020.

As a recognised stakeholder in the NICE process, our Group intended to submit feedback to NICE about this new draft guideline based on our members’ views and comments. For this, we organised 2 members-only sessions to discuss the draft, as well as an open discussion with Dr David Tuller gathering 104 people. Dr Tuller shared his thoughts on the draft and addressed attendees’ comments. The recording of this talk was uploaded on our website. These events generated valuable discussions that shaped our Group’s official response to NICE.

Jingle & Mingle online Christmas festival – 14[th] to 18[th] December 2020

This week before Christmas was filled with themed online activities open to all: Christmas storytelling with our patron Berlie Doherty, Christmas singalong, Christmas quiz and DIY Christmas decorations workshop.

38 people registered to one or more of the activities, of whom 36 were members. The week ended with a members-only Jingle Ball social to which 25 members participated, some of whom running quiz, games and storytelling.

16

Online talks and Q&A open to all

These talks aim at increasing the knowledge of people with ME/CFS, fibromyalgia and long covid about the conditions, at educating professionals working in related sectors like medicine or social care, and at raising awareness of the conditions among the general public. Every talk is live streamed on our Facebook page where people can comment and ask their questions live. Each talk is recorded, then uploaded for a later watch on our website and youtube channel. The full engagement report for these talks can be found in appendix II.

1. Dr Nigel Speight and the TYMES Trust – 24[th] September 2020

ME/CFS in Children and young people

This talk was aimed at families supporting young people and those not getting the support they need from schools and services. Dr Nigel Speight is the foremost expert on children and young people with ME/CFS. He is a semi-retired British doctor based in the North East of England who specialises in Pediatric ME/cfs and has been involved in fighting many child protection cases in which children with ME/cfs were at risk of being removed from their parents. He has acted as a voluntary pediatric medical advisor for many ME/cfs

charities. He has been outspoken about the risks to children with ME/cfs being misdiagnosed as having a psychiatric condition.

Debbie Burgess from the TYMES Trust introduced the work of this only national ME charity dedicated to children and young people with ME and their families.

2. The Workwell Foundation – 22[nd] October 2020

Preventing Post-Exertional Malaise – Pacing and Energy Management in ME/CFS

Our guests Staci Stevens and Dr Mark Van Ness from the Workwell Foundation have been studying ME/CFS using cardiopulmonary exercise testing for the past 21 years. They shared with us recent findings about post-exertional malaise, as well as their relevance in determining pacing strategies and energy conservation. The talk included information from their recent manuscripts, heart rate monitoring and energy conservation tips.

17

3. Dr Diane O’Leary – 20[th] November 2020

Seeing the big picture: ME, Fibromyalgia, MUS, FND and long Covid

Dr Diane O'Leary is a philosopher and bioethicist, currently a Visiting Fellow at the Center for Philosophy of Science at University of Pittsburgh. Her work focuses on mind-body issues in medicine, with special attention to confusion about dualism in diagnosis. Misunderstanding about dualism has made it difficult for many patients to access safe, ethical care, particularly those with ME/CFS, fibromyalgia, Ehlers-Danlos syndrome and chronic Lyme disease. One of the most impactful areas of Dr. O’Leary’s work is the effort to

show how medicine relies on mind-body confusions to support outdated social ideas about women. To secure health equity for women, Dr. O’Leary supports eliminating gender as a factor in psychosomatic diagnosis.

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MEMBERSHIP

Overview of our membership

At the end of 2020, our Group was composed of 312 members, which is 15% more than the year before. 94% of our members were living in South Yorkshire or North Derbyshire. In October 2020, we started gathering demographic data to build a fuller picture of our membership.

New options for getting membership

In July 2020, we set up an option to get membership through our website. This includes the option to get a recurring membership, and to add a donation. 29% of our members at the end of 2020 had used this purchase option.

Fees

The Group’s membership fees were maintained at £12 per year for 2020. We expect to be able to continue at that level next year.

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VOLUNTEERS

We welcome volunteers and encourage members to contribute time if they can. Many have learnt new skills, refreshed old ones, gained self-esteem and made friendships through this. Some have also gone on to paid employment.

Estimated volunteer hours 2020

Activity Number Hours Volunteers Total
hours
Drop-ins 14 2.5 1 35
Arts & Craft 10 1 1 10
Online OctoberFest and Xmas fest 1 15 1 15
Xmas social 1 3 4 12
AGM, Talks & guest events 5 1 3 15
Millions Missing 1 2 5 10
Members phone round 2 1 2 4
Trustees meeting 12 3 9 324
Magazine 3 30 4 360
Social media admin 150 1 1 150
Total hours 931

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GOING FORWARD

As 2021 beckons we gradually realise this will be the 20th anniversary since the Group became a registered charity. We know the Group has been in existence quite a bit longer, before it was registered and look forward to finding out some history!

This year has shown us how much new technologies can be used to support our most isolated and housebound members and increase opportunities for connection. But in such strange times we also know how painfully many are missing face to face contact, and when the time at home includes living with the deep fatigue and never-ending pain, many are really missing the opportunities to have contact and a change of scenery.

We will clearly now move forward working both online and, as soon as the situation allows, resuming safe face-to-face contact. We are as a charity just starting to understand how best to support our members with access to online support including devices and technical help.

The more we do, the more we find out what we could do - our phone round of members who do not have emails has shown this - and it is clear that the Group would benefit if there were more staff resources. The additional staff hours have really helped during the latter part of 2020 and we will do our utmost to undertake a staffing restructure, hopefully with the aim of establishing a charity manager role.

Hosting talks has been a very successful part of our activities - using Zoom and live-streaming on Facebook we are proud to be able to offer ‘scientists to your sofa’ and bring the latest research into the homes of members, with health professionals joining us too. We are becoming more confident in reaching out to even more eminent scientists, researchers and those with a global understanding of the worlds of ME/CFS and fibromyalgia.

During the coming year we also hope to strengthen our relationship with the local ME Clinic, particularly to ensure those being discharged know they can reach out to us.

The year ahead holds many opportunities - we await the delayed publication of the new NICE guideline for ME/CFS, some promising research is exploring new understanding of ME, diagnosis of fibromyalgia is shifting to be based more on patient experience. However, we are extremely concerned about the high number of people not recovering from covid-19 and experiencing post-viral symptoms that we are so familiar with, along with the familiar situation that the medical establishment still has little to offer that helps. We will be prepared to welcome new members.

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APPENDICES

Appendix I: OctoberFest festival report

Total number of registrations 278
People registered 84
Members of our Group 38%
From South Yorkshire 85%
From UK + Ireland 92%
From outside UK + Ireland 8%
People living with one or more of the following:
ME/CFS, fbromyalgia, long covid symptoms		 94%

Registrations breakdown for each activity:

Mindfulness 2 28
Mindfulness 1 23 (36 diferent people)
Tai Chi 2 27
Tai Chi 1 25 (36 diferent people)
Nutrition talk 32
PIP 1 14
PIP 2 13 (23 diferent people)
Singing 1 15
Singing 2 12 (21 diferent people)
Murder mystery 16
Let’s grab a drink 15
Chris' quiz 14
Writing workshop 1 14
Writing workshop 2 12
Play reading 10
French 9
Arts & Craft 4

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How would you rate the OctoberFest overall?

Please indicate the extent to which you agree with the following statements based on your experience of the OctoberFest:

Feedback quotes:

“[Wha� I ��k�� �he ���t ���] Be�n� ��le �� ��ke ���t �� �om�. I ha� ��n��� to ���� in ����re ��� w�� �ot ���� to ��� t� �e���s.”

“Hug� ��� t�a�k ��� �or ����ni���g O��ob����s�. I di� ��j�� a�d ��� � lo� �r�� ��. I wo��� l��e �� t�� mo��.”

“Tha�� y�� �e�y ���h ��� or����si�� Oc�o��r���t, it ��� � go�� ��s��ac���� an� I �id ���� le�� �s��a��d, I wo��� li�� ��r� �uc� �� �t�e�d ���� on���� ac����ti��.”

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Appendix II: Engagement report of our online talks

Dr Nigel Speight

l Speight
Total number of registrants 82
Members of our Group 11%
From South Yorkshire + North Derbyshire 16%
From UK + Ireland 84%
People living with one or more of the following: ME/CFS,
Fibromyalgia, long Covid symptoms 32%
People caring for someone who lives with ME/CFS, Fibromyalgia
or long Covid symptoms 66%
People working or volunteering for an organisation who supports
people with ME/CFS, Fibromyalgia or long Covid symptoms 20%
Max people present on the Zoom call 44
Views on Facebook 3.6k
Views on YouTube/Website 458
Total reach of event to date 4k
rkwell Foundation
Total number of registrants 424
Members of our Group 5%
From South Yorkshire + North Derbyshire 16%
From UK + Ireland 67%
People living with one or more of the following: ME/CFS,
Fibromyalgia, long Covid symptoms		 83%
People caring for someone who lives with ME/CFS, Fibromyalgia
or long Covid symptoms		 12%
People working or volunteering for an organisation who supports
people with ME/CFS, Fibromyalgia or long Covid symptoms		 11%
Max people present on the Zoom call 180
Views on Facebook 930
Views on YouTube/Website 241
Total reach of event to date 1.1k

The Workwell Foundation

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Dr Diane O’Leary

ne O’Leary
Total number of registrants 113
Members of our Group 27%
From South Yorkshire + North Derbyshire 37%
From UK + Ireland 93%
People living with one or more of the following: ME/CFS,
Fibromyalgia, long Covid symptoms 73%
People caring for someone who lives with ME/CFS, Fibromyalgia
or long Covid symptoms 14%
People working or volunteering for an organisation who supports
people with ME/CFS, Fibromyalgia or long Covid symptoms 15%
Max people present on the Zoom call 50
Views on Facebook 950
Views on YouTube/Website 194
Total reach of event to date 1.1k

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SHEFFIELD ME GROUP

FINANCIAL STATEMENTS

for the year ended 31 December 2020

(Registered Charity Number 1095416)

Contents Page
Legal information 2
Trustee's report 3-4
Independent examiner's report 5
Receipts and payments account 6
Statement of assets and liabilites 7
Notes to the accounts 8

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SHEFFIELD ME GROUP

Legal information

Trustees

Carolyn Leary Chair Simon Briggs Beatrice Greenfield Appointed 22 October 2020 Becca Gransbury Isabel Hemmings Appointed 16 April 2020 Duraiya Kapasi Appointed 16 January 2020 Alison Millar Ellen Roy Resigned 22 October 2020 Emma Saville Appointed 16 January 2020 Danny Sherwood Resigned 22 October 2020 Debbie Stephenson Marie Vinton Resigned 22 October 2020

Registered Charity Number

1095416

Principal address

The Circle 33 Rockingham Lane Sheffield S1 4FW

Bank

Lloyds TSB Church Street Sheffield

Independent examiner

Craig Williamson White Rose Accounting for Charities The Ghyll Threapland Aspatria CA7 2EL

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SHEFFIELD ME GROUP

Trustees' report

The trustees are pleased to present their report and financial statements of the charity for the year ended 31 December 2020.

The trustees have adopted the provisions of the Statement of Recommended Practice (SORP) "Accounting and Reporting by Charities", issued in March 2005, in preparing the annual report and financial statements of the charity.

Organisation

Sheffield ME Group is a registered charity and is governed by a constitution dated 11 October 2001, as amended 8 December 2002, and was entered on the register of charities on 15 January 2003.

The group is managed by a voluntary committee who are elected at each Annual General Meeting. Since 2002, part-time staff have been employed (60 hours total).

Objects of the charity

The objects of the charity are:-

We do this through our newsletters, drop-ins, library, IT support, information services, Listening Ear service, website, networking, hosting events and also via media coverage and liaison with other voluntary and statutory organisations. We do not give medical advice nor do we offer individual treatment programmes. Where possible we signpost to relevant bodies and resources. We are a self-help group with finite resources and we are, therefore, restricted to providing the above services.

Public Benefit Statement

Sheffield ME group is a self-help group which encourages and helps support those with Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) and their families and carers to use their own resources so that they are better able to manage the illness and the changes it has made to their lives. We do this by providing a wide range of services tailored to meet a variety of needs and/or circumstances and by raising awareness of the condition.

The trustees regularly give due consideration to the Commission's guidance in deciding what activities they should undertake, by reviewing the needs of their beneficiaries, by ensuring that the service is fully inclusive and that no detriment or harm arises from the organisation by carrying out its activities.

We operate with respect to each individual person and we aim to give each one an opportunity to have their say and to become more involved in the group, whilst working within our adopted policies and guidelines.

Our core values are based on our charitable objectives as stated in our constitution.

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trustees report cntd…………………………………

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SHEFFIELD ME GROUP

Trustees' report (continued)

Reserves policy

Sheffield ME Group aims to hold free reserves of 3 months running costs, which would equate to £19,080 based on the 2021 budget for existing activity. The Group currently holds £15,731 in free reserves. It is the intention of the group to achieve this level of reserve over the next few years through fundraising, donations and via other appropriate means.

The reserve fund will be ring-fenced to offer protection to employees, to meet any outstanding overhead costs and obligations, i.e.to enable a 3 month notification of any contractual leases and payment of outstanding liabilities.

Trustees' responsibilities for the financial statements

The trustees are responsible for preparing financial statements for each financial period which show the state of affairs of the Charity and of the surplus or deficit of the Charity for that period. In preparing those financial statements the trustees are required to:-

□ select suitable accounting policies and apply them consistently □ make judgements and estimates that are reasonable and prudent □ prepare the financial statements on a going concern basis unless it is inappropriate to presume that the charity will continue in business.

The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the Charity and enable the trustees to prepare financial statements.

The trustees are responsible for safeguarding the assets of the Charity and hence for taking reasonable steps for the prevention of fraud and other irregularities.

28th Oct 2021 Signed on behalf of the trustees on………………………………………….. By

………………………………………………………………………………………………… Cary

Carolyn Leary Print name………………………………………………………………………………..

Trustee

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SHEFFIELD ME GROUP

Independent examiner’s report to the trustees of SHEFFIELD ME GROUP

I report on the accounts for the year ended 31 December 2020, which are set out on pages 6 to 8.

Respective responsibilities of trustees and examiner

The charity’s trustees are responsible for the preparation of the accounts. The charity’s trustees consider that an audit is not required for this year under section 144(2) of the Charities Act 2011 (the 2011 Act) and that an independent examination is needed.

It is my responsibility to:

Basis of independent examiner’s report

My examination was carried out in accordance with the general Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit and consequently no opinion is given as to whether the accounts present a ‘true and fair view’ and the report is limited to those matters set out in the statement below.

Independent examiner’s statement

In connection with my examination, no matter has come to my attention:

(1) which gives me reasonable cause to believe that in any material respect the requirements:

q to keep accounting records in accordance with section 130 of the 2011 Act; and

q to prepare accounts which accord with the accounting records and comply with the accounting requirements of the 2011 Act

have not been met; or

(2) to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.

Craig Williamson

Signed:______

Craig Williamson

White Rose Accounting for Charities The Ghyll Threapland Aspatria CA7 2EL

Date:______28th October 2021

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SHEFFIELD ME GROUP

Receipts and Payments Account for the year ended 31 December 2020

Notes
Receipts
1
Grants and donations
2
Members' subscriptions
Fundraising
Sales
Bank interest
Total receipts
Payments
Salaries and national Insurance
3
Freelance staff
Payroll fees
Recruitment
Staff training
Trustee training
Christmas social
Events, conference, workshops and activities
Premises rental and room hire
Insurance
Telephone, internet and web
IT equipment and repairs
Postage
Stationery and office
Subscriptions
Publicity and newsletter
Staff and volunteers' travel
Accountancy
Other
Total payments
Net receipts/(payments) for the year
Cash and bank balance at 01/01/2020
Cash and bank balance at 31/12/2020
5		 Unrestricted
funds
£
2,193
3,867
-
-
-
6,060
-
-
-
-
-
-
-
1,334
-
-
-
-
-
-
-
-
-
-
(55)
1,279
4,781
10,952
15,733		 Restricted
funds
£
68,913
-
-
-
-
68,913
41,335
-
250
67
233
812
465
838
3,606
563
227
317
1,049
1,085
582
1,525
262
205
-
53,422
15,491
40,874
56,365		 Total 2020
£
71,106
3,867
-
-
-
74,973
41,335
-
250
67
233
812
465
2,172
3,606
563
227
317
1,049
1,085
582
1,525
262
205
(55)
54,701
20,272
51,826
72,098		 Total 2019
£
62,248
3,227
2,688
158
2
68,323
36,626
1,840
746
-
262
-
372
5,136
4,975
528
334
1,374
1,415
548
245
2,839
974
205
57
58,477
9,847
41,979
51,826

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SHEFFIELD ME GROUP

Statement of assets and liabilities as at 31 December 2020

2020 2019
£ £
Monetary assets
Balance at bank and cash 72,098 51,826
72,098 51,826
2020 2019
£ £
Liabilities
Rent and room hire 1,162 70
Independent examination 205 205
Postage 394 235
ICT 127 -
Telephone calls 9 -
Flowers for retiring trustees 123 -
Stationery and office - 248
Publicity and newsletter - 400
Staff travel - 24
Training for trustees - 420
Events, conference, workshops and activities - 660
Christmas Social - 205
2,020 2,467

Signed on behalf of the Trustees on……………………………….. by28th October 2021

Trustee ………………………………………………………………………….. sey PRINT NAME:…………………………………………………………………..Carolyn Leary

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SHEFFIELD ME GROUP

Notes to the accounts for the year ended 31 December 2020

1 Receipts and payments account

Because the level of income and expenditure is below £250,000, the group has opted for accounts to be prepared on a receipts and payments basis rather than an accruals basis. This is in line with Charity Commission guidelines for small groups and is seen as more appropriate for this group.

2 Grants and donations
Grants:-
Big Lottery Fund
DPO Covid-19 Emergency Fund
Sheffield City Council Community COVID-19 Response Fund
Sub total
Donations:-
Donation for Tai Chi classes
General donations
Total grants and donations
3 Staff costs
Staff costs during the period were:-
Gross salaries and employers pension
Employer's national insurance
Number of staff:
3 part time staff		 Unrestricted
funds
£
-
-
-
-
-
2,193
2,193
41,335
-
41,335		 Restricted
funds
£
59,145
6,822
2,180
68,147
766
-
68,913		 Total
2020
£
59,145
6,822
2,180
68,147
766
2,193
71,106

4 Restricted funds

Big Lottery Fund Lottery
DPO Covid-19 Emergency Fund
People's Health Trust
Art Group
Tai Chi Classes
Sheffield City Council Community COVID-19 Response
Fund		 Balance at
01/01/2020
£
40,372
-
297
-
205
-
40,874		 Receipts
£
59,145
6,822
-
2,180
-
766
68,913		 Payments
£
51,119
1,800
297
-
205
-
53,422		 Balance at
31/12/2020
£
48,397
5,022
-
2,180
-
766
56,365

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