OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2021-12-31-accounts

AMEND 2021 Annual Report & Accounts

Contents

Page 3 Constitutional Aims and Objectives
Page 3 AMEND and the Trustees
Page 4 Changes to AMEND and the Trustee Board
Page 5 Chairperson’s Report
Page 5 CEO’s Report
Page 6 2021 Overview
Page 8 2022 and Beyond
Page 9 Membership Report
Page 10 Fundraising Report
Page 11 Treasurer’s Report
Page 12 Statement of Financial Activities
Page 13 Balance Sheet
Page 14 Notes to the Financial Statements
Page 19 Independent Examiner’s Report
Page 20 Contact Information

2 | P a g e

CONSTITUTIONAL AIMS AND OBJECTIVES

The object of the CIO is to relieve people who suffer from Multiple Endocrine Neoplasia (M.E.N.) of all types, their families, friends and carers by all or any of the following means:

AMEND AND THE TRUSTEES

The Trustee Board present their annual report together with the financial accounts of the Charity for the year ended 31 December 2021.

Structure, Governance and Management

AMEND is a Charitable Incorporated Organisation governed by a Constitution, vesting control and responsibility in the Trustee Board on behalf of the membership. The Trustees hold regular meetings to administer the Charity and their terms of office are determined by the AMEND Constitution. The term of office for an AMEND Trustee is three years beginning from the Annual General Meeting when voting in takes place.

Trustees’ Responsibilities for the Financial Statements

The trustees are responsible for preparing the Trustees’ Annual Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

The law applicable to charities in England & Wales requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources of the charity for that period. In preparing these financial statements, the trustees are required to:

3 | P a g e

The trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

The trustees are responsible for the maintenance and integrity of the charity and financial information included on the charity’s website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.

CHANGES TO AMEND AND THE TRUSTEE BOARD

New Trustees:

The following Trustees were appointed to the Board at the 2021 AGM:

  1. Andy Price

  2. Karen Williams

Retiring Trustees:

The following Trustees retired during 2021 and we thank them wholeheartedly for their service to AMEND over the years:

  1. Dr Simon Williams

  2. Edel Murphy

  3. Joel Russell-Winter

Trustee Executive Committee:

There were no changes to the Executive Committee during 2021

4 | P a g e

CHAIRPERSON’S REPORT

Key principles of AMEND include - Patient Support and Information / Patient Representation and Disease Awareness Raising / Research Funding and Involvement. There is much activity in these areas at present, best summarised as ‘We can always do more’. With three new AMEND Trustees and the skill set that each brings, it is clear that the Charity continues to move in the right direction.

Barney Harrison Chair of the AMEND Board of Trustees 25[th] September, 2022

CHIEF EXECUTIVE’S REPORT

Dear all,

Thanks to the rapid adaptations we made in 2020 and despite the occasional restrictions from new surges of coronavirus, we continued with our work as best we could and certainly achieved plenty to be proud of (pages 7-9).

Our adaptability was typified by our determination to ensure production of numerous film resources that we had been planning for some time. Project Rollercoaster’s filming of adolescents and young adults discussing issues important to them went virtual during lockdown, with the films interjected with appropriate social media graphics to bring it as close as possible to its demographic. This was followed by location filming as soon as restrictions lifted (but with all precautions taken) to produce 6 excellent films – 3 each about MEN1 and MEN2.

At the heart of everything we do is our membership which continues to grow steadily. Not only do our members use our services and resources, but they also contribute massively to our projects, including all those who have starred in our patient experience films, our Community Advisory Groups members, Trustees, Medical Advisory Teams, fundraisers, and many, many more. You drive us to be better and to do more. Thank you for your confidence in us.

Wishing everyone the best of health,

Jo Grey AMEND Chief Executive Officer 25[th] September, 2022

5 | P a g e

2021 OVERVIEW

Source of Information

76 members attended the 2021 Annual Patient Information Day in London for free at a cost of £55 per head to AMEND

AMEND spent over £14,888 on audio visual resources: 6 films about MEN1 and MEN2 costing and 16 short films for adolescents and young adults.

Provision of Support

137 membership packs (worth £10 each) were sent out by AMEND to new members costing £1,370

182 new patient & family members joined AMEND for free in 2021

Over 200 counselling and supervision sessions were provided to AMEND members and volunteers at a cost of between £50 to £80 per hour respectively

6 | P a g e

8 virtual peer support meetings were held during 2021 for the benefit of almost 50 members. 100% of those surveyed were keen to repeat the experience

Raise Awareness of MEN & Associated Endocrine Conditions

AMEND increased its social Media awareness activities, getting involved in World Cancer Day, Thyroid Cancer Month and Phaeo Para Awareness Week, amongst others

AMEND had a presence at 2 in-person UK medical conferences (exhibition stands) and 1 online European conference where AMEND hosted a patient hub session with our Patron, Professor Raj Thakker

The AMEND CEO gave two patient participation lectures to 2[nd] year medical students at University College London, and an online public talk about patient involvement in research for the University of Birmingham

Advocacy

AMEND recruited 2 patient experts and made submissions to NICE and the SMC for the successful temporary approval of selpercatinib in RETmutated thyroid cancer

7 | P a g e

Research

AMEND set up and began recruitment for 6 Community Advisory Groups to assist in providing the patient voice to research. The ACC and MTC CAGs began work on relevant research projects.

AMEND approved funding of 3 research projects (MEN1, PPGL, ACC) worth a total of almost £30,000 (1 invoice for £10,000 outstanding)

2022 AND BEYOND

We have a plethora of information resources that are due to be updated in 2022, as well as some adaptations for our other group, Phaeo Para Support UK, including a cartoon for children aged 5-8.

Our project to develop a smartphone app to replace and expand the utility of our MEN Passports across all the disease we support will begin this year. We expect this project to take 2-3 years to completion.

Our project to help reduce the time to diagnosis for our rare endocrine tumours and syndromes is still in the exploration stage but is gradually taking shape and will be recruiting volunteers to assist in due course.

We continue to recruit volunteers for our Community Advisory Groups for MEN2, MEN3 and PPGL syndromes, and look forward to our existing Groups getting involved in more research projects during 2022.

For anyone interested in getting involved, please visit our website where you will find information on volunteering.

8 | P a g e

MEMBERSHIP REPORT

AMEND offers free membership to patients, their family and friends, as well as to healthcare professionals. Our patient communities cover multiple endocrine neoplasia disorders, phaeochromocytoma & paraganglioma syndromes, adrenocortical cancer, sporadic phaeochromocytomas and medullary thyroid cancer.

AMEND’s patient/family members totalled 1060 by the end of 2021 (878 in 2020), showing its continued upward membership registrations.

----- Start of picture text -----
Total Membership 2018-
2021
1060
878
711 730
2018 2019 2020 2021
Number of members
----- End of picture text -----

Whilst much of our membership base is understandably in the UK, patients from many countries around the world also continue to appreciate AMEND’s membership benefits. A charge applies to overseas members to cover the cost of shipping Membership Packs where requested.

9 | P a g e

FUNDRAISING REPORT

Huge thanks go to the following for their extraordinary fundraising efforts and financial or in-kind donations during 2021:

Thank you to 2021 supporters: the Houghton Dunn Charitable Trust, the Nick Fayers Research Fund, Ipsen, AAA UK & Ireland Ltd, the Society for Endocrinology, the Barnes Group Ltd

Big thanks to our committed fundraisers who found great ways to support AMEND during 2021: Josh Dickson and Jan Burbie (London Marathon), London 10k runners Jaspreet Bhatiwal, Jatinder Bell, Gurminder Kainth, Nadia Krauhaus, James Donaldson and David Thomas. Paula McGough (Ring of Kerry Virtual Challenge), Emma Williams, Sarah Norman and Lisa Kramer Fit to Fight, Nicki Swindells (Auction and fundraising dinner), George, Isaac, Joe, Harvey and Finn (Duke of Edinburgh Bronze Award fundraising), Danyal and Dilhan Akarca (various fundraising over the year), Anthony and Gillie O’Flaherty (Etape Loch Ness), Jack Maynard (3 peaks challenge), Alan Grey (Isle of Wight trek), William Fayers (Cambridge Half Marathon), Wildridings primary school and Jessica Heyland.

Finally, thank you to everyone who has donated (anonymously or not), or offered their time for free over the past year. You really make a difference!

10 | P a g e

TREASURER’S REPORT

2021 results . The charity’s total incoming resources were £93,239 (2020 £109,814) – down 15% on the previous year and now less than 50% of the income we received prior to the Covid-19 pandemic. We would like to thank our members and grant funders who continued to support us during another difficult year.

The extent of the fall in income was not reflected by comparable fall in expenses which led to the charity ending the year with a deficit of £36,398. Despite this, we managed to designate a further £9,000 towards our very valuable counselling service and made research grants and awards totalling £19,595 during the year. Another significant expense for AMEND this year was £14,888 on patient education films.

Reserves . AMEND’s undesignated unrestricted reserves now stand at £47,821 (2020 £46,775). Due to the high-risk nature of our main funding stream (voluntary grants and donations), we aim to retain general funds of £60,000. This is a level reasonable enough to ensure that AMEND could continue to operate its core activities for six months while enabling it to identify and utilise replacement funding streams.

Catherine Hamilton-Woodthorpe Treasurer 25[th] September 2022

11 | P a g e

STATEMENT OF FINANCIAL ACTIVITIES

For the Year ended 31 December 2021

2021 2020
notes Restricted Unrestricted Total Funds Restricted Unrestricted Total Funds
£ £ £ £ £ £
Income and endowments from:
Donations and legacies 5 - 81,428 81,428 7,079 81,129 88,208
Charitable activities 6 10,880 193 11,073 19,636 79 19,715
Other trading activities 7 10 689 699 800 893 1,693
Investments - 39 39 - 198 198
Total income and endowments 10,890 82,349 93,239 27,515 82,299 109,814
Expenditure on:
Raising funds 8 - 8,427 8,427 - 8,235 8,235
Charitable activities 9 40,966 57,827 98,793 23,583 60,766 84,349
Support costs 10 - 21,498 21,498 - 17,435 17,435
Governance costs 11 36 883 919 - 1,336 1,336
Total expenditure 41,002 88,635 129,637 23,583 87,772 111,355
Net income / (expenditure) (30,112) (6,286) (36,398) 3,932 (5,473) (1,541)
Transfers between funds 13 6,533 (6,533) - 1,404 (1,404) -
Net movement in funds (23,579) (12,819) (36,398) 5,336 (6,877) (1,541)
Reconcilation of funds
Total funds brought forward 37,601 164,589 202,190 32,265 171,466 203,731
Total funds carried forward 14,022 151,770 165,792 37,601 164,589 202,190

BALANCE SHEET

As at 31 December 2021

2021 2020
note £ £
Fixed assets 12 1,710 511
Current assets
Stocks 3,321 3,978
Trade debtors - 200
Prepayments and accrued income 1,300 1,896
Cash at bank
Deposit account 155,066 144,878
Current accounts 5,712 52,918
165,399 203,870
Creditors: amounts falling due
within one year
Trade creditors (6) (889)
Payroll taxes (363) (473)
Pensions payable (348) (229)
Accruals (600) (600)
(1,317) (2,191)
Net current assets 164,082 201,679
Total net assets 165,792 202,190
Funds of the Charity
Restricted income funds 13 14,022 37,601
Designated funds 14 103,949 117,814
Unrestricted funds 47,821
46,775
Total Charity Funds 165,792 202,190

These financial statements were approved by the Trustees on 28[th] September, 2022 , and are signed on their behalf by

Catherine Hamilton-Woodthorpe Treasurer 28[th] September, 2022

NOTES TO THE FINANCIAL STATEMENTS

For the year ended 31 December 2021

1. ACCOUNTING POLICIES

The financial statements have been prepared under the historical cost convention and in accordance with applicable accounting standards and with the Charities Accounting Statement of Recommended Practice (SORP FRS 102).

a) Grants and voluntary income

All grants and voluntary income are accounted for in the year when they are received unless receipt has become certain at the balance sheet date.

Other income and expenditure is accounted for on the accruals basis.

All investments stated as current, being monetary assets, are stated at cost.

14 | P a g e

NOTES TO THE FINANCIAL STATEMENTS (continued) For the year ended 31 December 2021

2. TAXATION

As a registered Charitable Incorporated Organisation, the association is not liable to income or capital taxes.

3. TRUSTEE REMUNERATION

No trustee received any remuneration. One trustee received reimbursement of travel and subsistence expenses amounting to £149.65 (2020: Two trustees; £310.85) to enable them to attend conferences, the AGM and trustee meetings.

4. STAFF COSTS AND AVERAGE NUMBERS

Wages and salaries
Employer pension contributions
Management and administration
Patient Support administrator
Total
2021
£
39,109
1,173
40,282
1
1
2
2020
£
38,395
577
38,972
1
1
2
2021 2020
**Restricted ** Unrestricted Total Total
£ £ £ £
5. DONATIONS AND LEGACIES
Donations and gift aid - 51,428 51,428 58,208
Grants - 30,000 30,000 30,000
- 81,428 81,428 88,208
6.INCOME FROM CHARITABLEACTIVITIES
Grants for charitable activities 10,880 - 10,880 19,636
Other - 193 193 79
10,880 193 11,073 19,715
7. INCOME FROM OTHER TRADING ACTIVITIES
Grant of licence to show ACC film clips - - - 800
Sale of merchandise 10 689 699 893
10 689 699 1,693
~~15 ~~ ~~a~~
~~g~~

~~15 | P a g e~~

NOTES TO THE FINANCIAL STATEMENTS (continued)

For the year ended 31 December 2021`

2021 2021 2020
**Restricted ** Unrestricted Total Total
£ £ £ £
8. RAISING FUNDS
Staff costs - 6,445 6,445 6,236
Merchandise - 657 657 1,763
Other - 1,325 1,325 236
- 8,427 8,427 8,235
9. CHARITABLEACTIVITIES
Staff costs - 22,265 22,265 21,588
Patient information printing, booklets and website - 2,943 2,943 4,306
Patient information events and conferences 10,082 7,820 17,902 3,203
Patient education films 14,888 - 14,888 11,413
Patient representation - - - 851
Research grants and awards - 19,595 19,595 17,996
ACC support and ACC research gran 840 - 840 1,847
ACC staff costs 8,056 - 8,056 7,794
Patient support and counselling 7,100 5,204 12,304 15,183
International development - - - 168
40,966 57,827 98,793 84,349
10. SUPPORT COSTS
Rent - 14,534 14,534 12,298
Staff costs - 3,516 3,516 3,355
Printing, postage and office supplies - 846 846 540
IT support - 209 209 30
IT software and consumables - 606 606 446
Insurance - 632 632 611
Finance charges - 122 122 120
Depreciation - 999 999 -
Legal fees - 35 35 35
- 21,498 21,498 17,435
11. GOVERNANCE
Independent examiner - 600 600 600
Trustee meetings, AGM and other 36 283 319 736
36 883 919 1,336
12. TANGIBLE FIXED ASSETS Equipment
£
10,723
2,198
12,921
10,212
999
11,211
1,710
511
£
Cost
At1/1/21 10,723
Additions 2,198
At 31/12/21 12,921
Depreciation
At1/1/21 10,212
Chargeforthe year 999
At 31/12/21 11,211
Net book value at 31/12/21 1,710
Net book value at 1/1/21 511

16 | P a g e

NOTES TO THE FINANCIAL STATEMENTS (continued)

For the year ended 31 December 2021

13. RESTRICTED INCOME FUNDS 13. RESTRICTED INCOME FUNDS 13. RESTRICTED INCOME FUNDS
B/forward Income Direct costs Transfer
from
reserves
Balance
£ £ £ £ £
Anonymous donor 677 - - 677
ACC Support UK 8,140 10 (8,896) 746 -
TheBig Give2016-Project Rollercoaster 4,513 - (6,917) 2,404 -
CartoonLicence 380 380
Sanofi 86 86
Ipsen-MEN2A films 2,190 (5,178) 2,988 -
AAA Pharma MEN1Films - 4,000 (4,230) 230 -
ITM Solucin 1,636 - (1,801) 165 -
Barnes ConstructionGolf Day 7,079 7,079
HRA Pharma- ACCfilms 5,000 5,000
Licence to useACCfilmclips 800 800
NationalLottery-Counselling 7,100 - (7,100) - -
Ipsen2021Patient InformationDay - 1,400 (1,400) - -
Ipsen-MEN1films - 5,480 (5,480) - -
~~-~~
37,601 10,890 (41,002) 6,533 14,022

17 | P a g e

NOTES TO THE FINANCIAL STATEMENTS (continued)

For the year ended 31 December 2021

14. DESIGNATED FUNDS 14. DESIGNATED FUNDS
B/forward Income Direct costs Staff costs Balance
£ £ £ £ £
Counselling service - 9,000 (3,270) 5,730
Research Fund 83,064 - (19,595) - 63,469
Hardship fund 750 - - - 750
Personnel contingency fund 30,000 - - - 30,000
Research Registry Project 4,000 - - - 4,000
117,814 9,000 (22,865) - 103,949
15. RELATED PARTY TRANSACTIONS
There were no relatedpartytransactions in 2 021 or 2020.

18 | P a g e

INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES

I report on the accounts of the charity for the year ended 31 December 2021 which are set out on pages 12 to 18.

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:

Brian Luxford Independent Examiner Raymond Benn & Co. Ltd

26[th] September, 2022

19 | P a g e

CONTACT INFORMATION

AMEND

Tyler House, 58-66 Morley Road Tonbridge, Kent, TN9 1RA 01892 516076 / 841032 info@amend.org.uk Website: www.amend.org.uk Facebook: www.facebook.com/AssociationforMENdisorders Twitter: www.twitter.com/AmendInfo (@AmendInfo)

Jo Grey (CEO) Tel: 01892 516076 Email: jo.grey@amend.org.uk Helen Blakebrough (Exec Admin) Tel: 01892 841032 Email: helen@amend.org.uk

AMEND Trustee Board

Barney Harrison (Chair) Catherine Hamilton-Woodthorpe (Treasurer) Gill Masters Professor Karim Meeran Mrs Laura Jones Ms Louise Breen, RN Dr John Ayuk Ms Miriam Asia, RN Andy Price Karen Williams Robert Millinship (co-opted 2021) Sarah Norman (co-opted 2022) Graeme Cohen (co-opted 2022)

Patrons

Recorder, Mrs Jo Delahunty, KC, MA (Oxon) Jurisprudence Professor Rajesh Thakker, May Professor of Medicine, OCDEM, Churchill Hospital, Oxford

Mr Shaun Williamson, Actor

AMEND UK Medical Advisory Team (AMAT)

Dr Caroline Brain, Professor Maralyn Druce, Professor Ashley Grossman, Dr Fiona Lalloo, Mr David Scott-Coombes, Professor Rajesh Thakker, Dr Scott Akker, Dr Ruth Casy, Professor Wiebke Arlt, Professor Nick Reed, Mr Radu Mihai

Independent Examiner

Mr Brian Luxford,FCA Raymond Benn & Co Limited Sheffield Stables 1 Sheffield Road Southborough Tunbridge Wells Kent TN4 0PD

20 | P a g e