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2023-03-31-accounts

MDS UK PATIENT SUPPORT GROUP

Unaudited Financial Statements

Year ended 31st March 2023

Registered Charity Number: 1145214

MDS UK PATIENT SUPPORT GROUP

Report of the Trustees for the year ended 31st March 2023

Index Page Number Description 3 to 10 Report of the Trustees 11 Unaudited Statement of Financial Activities 12 Unaudited Balance Sheet 13 to 16 Unaudited Notes to the Financial Statements

Registered Charity Number: 1145214

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MDS UK PATIENT SUPPORT GROUP

Report of the Trustees for the year ended 31st March 2023

The trustees submit their report together with the financial statements for the year ending 31st March 2023.

Results

The results for the year and the financial position of the charity ("MDSUK") are shown in the annexed financial statements. The charity is a non-profit Charitable Incorporated Organisation and is a registered charity (No, 1145214).

The financial statements have been prepared in accordance with the accounting policies and comply with the Charity’s governing document, the Charities Act 2011 and Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard (FRS 102).

Chair’s report

During the year under review, we began to see the light at the end of the COVID tunnel, and the World Health Organisation has since duly declared the end of the global health emergency. However, as we emerged from the lockdowns and restrictions imposed during the last three years, it became clear that things will not quickly return to ‘normal’ and we are all aware of the difficulties the health service currently has in provision of care and support for patients. During last year it was important that communications with and between our members on developments generally, and with specific reference to the needs of MDS and CMML patients, continued. I am pleased to say that feedback on the quality and effectiveness of our support continues to be at a high level.

However, it became clear during the last year that the relentless pressure on our staff and volunteers to provide the necessary support to members was affecting their well-being. As a result, we employed additional resource to support our administration and have reviewed our communications and back office support, in order to improve efficiency and effectiveness. During the year we also reviewed our strategic objectives and are putting in place our plans to achieve the planned extensions and improvements in patient support and our work in aiding research into MDS and CMML. These plans require investment in people and systems and we are fortunate that our fund-raising remained robust during the last year, allowing us to implement the changes we have already agreed. We are confident that we can continue to provide and extend the support that our members need as they deal with the consequences of the diagnosis they have received.

Sadly, as I write, Sophie Wintrich has had to take extended leave, and has decided to step down as CEO; we all wish her a speedy recovery. We are grateful to Debbie Hickman, who had been employed as Deputy CEO for part of the year, for agreeing to take on the full role during this important time.

I would also like to thank all our staff for the work they continue to do, and all others who have worked hard in supporting our members - patient support ambassadors, fund-raisers, other

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MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31st March 2023 supporters and our trustees. We are fortunate to have attracted two new trustees who were appolnted durSn8 the year and one new trustee slnce the start of thls year,. the posltive results of thelr Involvement In the management of our charlty Is already very evident. I would Ilke to thank the three trustee5 who have stepped down as trustees at the tlme of thls report- Don Barrett, Chrls Charlewood, who have retlred, and Sophle Wlntrlch. whose role as CEO had n4ade It dlffieult to malntaln her position a5 a trustee. They have all freety Invested thelr tlme and energy In support of our members during many years. Flnally, I send my best wlshes to all our members. patlent5 and thelr famllles and pledge that we wlll contlnue to look for improvement5 In all our support servlces, asslstln8 them In deallng wlth the personal consequences of thelr condltlon. Tony Allen Actlng Chalr MDS UK July 2023 Our purposes and actlvltle$ The Charlty's prfnclpal artlvltles durlng the year under revlew relate to the support of Indlvlduals sufferlng Myelodysplastlc Syndrome {"MDS"}, whlch Is a rare blood cancer. The actlvFtles were prevlou51y carrled on by a trust wlth the same name and were taken over by the company wlth effect from 1st Aprll 2012. The objects of the Charlty are: 111 To relleve the slckness and preserve, promote and protett the health of sufferers of MDS In the United Kingdom through the provision of supporL education, and practical advice {11} To advance the educatlon of the general publlc In the Unlted Kln8dom In all areas In relatlon to MDS. 11111 To promote and support sclentlflc research Into MDS and Its treatment together wlth the care of MDS sufferers and those dlsposed to the development of MDS. Report of the Chlef Exe¢utfve Oblertlves and achlevements MDS UK'S ¢harltable purpose has two maln strands: The provlslon of patlent support. at both group and Indlvldual levels, to those sufferlng from the dlsea5e. as well as thelr famllles and carers;

MDS UK PATIENT SUPPORT GROUP

Report of the Trustees for the year ended 31st March 2023

To fulfil these objectives, the charity’s main activities continue to be:

1. Patient/user level:

2. Wider MDS community:

Main achievements in this financial year include:

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MDS UK PATIENT SUPPORT GROUP

Report of the Trustees for the year ended 31st March 2023

Operations

The charity conducts a full review of systems and processes each year, and sets aims and objectives for the coming period. We had managed to fulfil its main objectives, continuing to provide support to patients and full participation in clinical work through the pandemic in the previous two years. We have continued to review whether face-to-face support can be resumed at the same time as improving and expanding its online services. By engaging with AbilityNet, we can now offer direct IT support to members, enabling as many as possible to participate in online forums, meetings, webinars etc.

An Operations Manager was appointed in July 2022 on an initial six-month contract, with a remit to review systems, policies and processes, as well as manage all day-to-day internal operations. Initially a part-time appointment, hours were increased in October 2022, enabling the longserving CEO to take extended leave during a period of illness and family bereavement. In addition, an experienced Business Analyst was appointed on a six-month contract to review IT systems, and considerable improvements have now been made to the charity’s operational systems and data security. New policies were introduced and existing policies updated and improved. Further policy requirements have been identified and will be introduced during the next 12 months.

2023/24 strategic objectives

Following the appointment of a new Treasurer in early 2023, a full review of financial processes and banking arrangements will take place shortly in 2023/24.

A move to new office premises were put on hold during this period, this is now planned for 2023/4.

Other priorities for 2023/4 include:

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MDS UK PATIENT SUPPORT GROUP

Report of the Trustees for the year ended 31st March 2023

 Review and agree fundraising/legacy strategy moving forward.

Debbie Hickman, Interim CEO June 2023

Financial review

The following figures were taken from the full accounts approved on XXXXXXX. This part of the Trustee’s annual report comments on the key features of these accounts. In this section we explain how we raised the money and then how we spent it.

Money received - £402,047. Money spent - £204,117.

Two legacies contributed to a surplus of £196,630 compared to surplus of £416,327 in 2021/22.

Money received: sources of funds

We received donations of £119,364 from members of the public and relatives of patients. This was an increase of 15% compared to last year.

We were fortunate to receive two legacies during the year amounting to £260,000 (2021/22 £308,253). We are extremely grateful to those who choose to recognise the work of the charity in this way.

As referred to in the Chair’s report the research programme at Queen’s University Belfast was terminated in September 2022. This has been recognised as a significant post balance sheet event and we have written back the provision for the unspent grant.

Money spent:

Expenditure for the year of £204,117 (£107,100 2021/22). This year’s accounts report the costs of each of our charitable activities. The comparative figures are restated accordingly.

The surplus for the year of £196,630 has been added to unrestricted reserves which now amount to £802,894. This is outside the parameters of our policy on reserves. A strategy review was held during this year to consider the opportunities offered by the excess reserves to extend our activities but our immediate priority is the improvement of staff levels and systems to enable this to happen.

Going concern

Reserves are needed to bridge the gap between the spending and receiving of income and to support the activities of the Charity in the event of a significant reduction in income. From time to time the trustees review the required level of reserves. The trustees have reviewed the ability of the charity to raise funds and the increase in demand for our services. They have concluded that the budgeted income and expenditure with the existing level of free reserves is sufficient for

7

MDS UK PATIENT SUPPORT GROUP

Report of the Trustees for the year ended 31st March 2023

the Charity to be able to continue as a going concern

Reference and administrative details

Charity number: 1145214 Registered Office: Haematology - Bessemer Wing (Ground Floor), Kings College Hospital, Denmark Hill, London SE5 9RS.

Our Advisors

Examiner: Orchard Accountants, The Old Court House, New Road Avenue, Chatham, Kent, ME4 6BEJ

Bankers: CAF Bank Ltd Charity Bank Co-Operative Bank Ltd CCLA Investment Management Ltd Hampshire Trust Bank Scottish Widows Bank Redwood Bank Ltd

Trustees

The trustees serving during the year and since the year end were as follows:

Edward Peel Sophie Wintrich (resigned 28th April 2023) Don Barrett (resigned 24th February 2023) Russell Cook Chris Charlwood (resigned 24th February 2023) Fiona Pirilla (resigned 21st May 2021) Claudia Richards Tony Allen (appointed 1st October 2021) Lin Holder (appointed 1st October 2021) John Evason (appointed 24th February 2023) Alastair Day (appointed 24th February 2023)

Key management personnel:

Chief Executive: Debbie Hickman (acting CEO)

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MDS UK PATIENT SUPPORT GROUP

Report of the Trustees for the year ended 31st March 2023

Structure, governance and management

Governing document

The Charity changed from a company limited by guarantee to a Charitable Incorporated Organisation (CIO) governed by a constitution dated 23rd October 2020. The members of the CIO who are trustees of the charity are listed above.

Appointment of trustees

Existing trustees propose new trustees. The number of trustees shall not be less than three and a maximum of eight.

Organisation

The board of trustees administers the charity and normally meets quarterly. A Chief Executive is appointed by the trustees to manage the day to day activities to facilitate effective operations. The Chief Executive has delegated authority, within terms of delegation approved by the trustees, for operational matters including finance and employment.

Equal opportunities

The Charity operates a policy of equal opportunities. All recruitment, employment practice and service delivery within the organisation is carried out according to the principles of equal opportunities.

Risk management

The trustees have assessed the risks to which the charity is exposed and are satisfied that systems and procedures are in place to mitigate, where possible, those risks identified. The principal risk is the ability to replace key staff and trustees and our ability to secure staff for the planned expansion of activities.

Register of interests

A register has been set up in which trustees are required to declare their outside interests, specifically directorships of other boards.

Trustee's responsibilities in relation to the financial statements

The trustees are responsible for preparing the Trustees' Report and the financial statements in accordance with applicable law and regulations. Charity law requires the trustees to prepare the financial statements for each financial year.

The financial statements have been prepared in accordance with the accounting policies set out in notes to the accounts and comply with the charity's governing document, the Charities Act 2011 and Accounting and Reporting by Charities: Statement of Recommended Practice applicable to

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MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 315t March 2023 charltles preparlng thelr accounts In accordance wlth the Flnanclal Reportlng Standard {FRS 1021 for Smaller Entities. Under charlty law the trustees must not approve the flnanclal statements unle55 they give true and falr vlew of the state of affalrs of the company and of the Incomlng resources and outgolng resources of the charlty for that perlod In preparlng these flnanclal statements, the trustees are requlred to: {11 select sultable accountlng pollcles and then apply them conslstently. {il} observe the method5 and prlnclples In the Charitles Statement of Recommended Practlce (SORP}; 11111 make Judgment5 and accountlng estlmate5 that are reasonable and prudent. Ilvl prepare the flnanclal statements on the golng concern basls unless It Is Inapproprlate to presume that the charlt¥ wlll contlThue In buslness. The trustees are responslble for keeplng proper accountlng records that are sufflclent to show and explaln the charity's transattlons and dlsclose wlth reasonable accuracy at any tlme the flnanclal posltlon of the charlty and to enable them to ensure that the flnanclal statements comply wlth the Charltles Act 2011. They are also responsible for safe8uardlng the assets of the charlty and hence for taklng reasonable steps forthe preventlon and detection of fraud and other Irregularltles. The trustees are responslble for the malntenance and Integrlty of the corporate and flnanclal information Included on the charltable compan￿$ webslte, Thls report has been prepared In accordance wlth the provlslon5 appllcable to charltles. By Order of the board ofTru5tee5 A< TonyAllen (Actlng Chalrl Date 1st October 2023 io

MDS UK PATIENT SUPPORT GROUP

Unaudited notes to the financial statements as at 31st March 2023

Unaudited Statement of Financial Activities (Incorporating Income and Expenditure Account) for the year ended 31st March, 2023

Note
Income from
Donations and similar incoming resources
3
Legacies
3
Grants
4
Investment income
5
Other Income
Total income
Expenditure on
Raising Funds
6
Charitable activities
7
Governance Costs
12
Total expenditure
8
Write back of Provision for Research grant
10
Net income
Reconciliation of funds
Total funds brought forward
Total funds carried forward		 2023
£
Total
119,364
260,000
0
4,075
18,608
402,047
39,919
164,166
32
204,117
1,301
196,630
-
606,264
802,894		 2022
£
Total
102,959
308,253
1,122
700
7,549
420,583
21,004
86,061
35
107,100
-102,844
416,327
-
189,937
606,264

All amounts relate to continuing activities

The notes on pages 13 to 16 form part of these financial statements

Page 11

MDS UK PATIENT SUPPORT GROUP Unaudited notesto thelSn•n¢lal statements as at 31st March 2023 As at 3knt March 202> 1023 2022 T4>tal Yotal Cufr•ntas8•ts: Del)tors 14 1,328 9,387 Current asset Investments 15 377,894 372,860 ash at bank and In hand 429,699 244,064 Llab115tles: Amtsunts falllng due wlthln Oney￿r CredStors and attruals 16 6.027 -11,(M2 Total N•tAss•ts 802094 615,269 Provlslon for reSea￿h grant io The Funds olthe Charlty Unrnstrfrtgd In¢om• funds 17 802,894 606,264 Tot41 frinds 802,8 606,264 The trustees are re5ponslb5e fur the preparatlon of the auounts. The trustee$ conslderthat an aud￿ Is not requlred for thls year under sectlon 144121 of the Charltles Art 2011 lthe 2011 Act) and that on Independent exarnlnatlon Is needed. The tru5tee5 acknowled8e thelr re5ponslbllltles for ¢omplylng wlth the requlrements of the Art In respect of accountlng records and the preparatlon of flnanclal statements. The flnanclal statements have been prepared In accordance wlth the provlslons of the Charltles Act 2011 and guldance provlded bythe Charlty Commlsslon. The financlal ststements on pages llto 16 were approved by the l)oard of trustse5 On the 18th November. 2022 and 8￿hortsed for1$5ue and slgned on fts behaw by: TonyAllen A¢tlngChalr Reqlstered Charlty Number.. 1145214 Pa8e 12

MDS UK PATIENT SUPPORT GROUP

Unaudited notes to the financial statements as at 31st March 2023

1) Accounting policies

The Charity is a Charitable Incorporated Organisation (CIO) registered in England & Wales and has no share capital. The charity's registered office address is Haematology - Bessemer Wing, Kings College Hospital, Denmark Hill, London SE5 9RS. Its charity number is 1145214.

Basis of preparation

The financial statements were prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standards applicable in the UK and Republic of Ireland (FRS 102), effective 1 January 2019 - Charities SORP (FRS 102).

Assets and liabilities are recognised at historical cost or transaction value.

Preparation of accounts on a going concern basis.

The Trustees are satisfied that the CIO is a going concern and that these accounts should be prepared on that basis. With the continuing uncertain economic outlook the Trustees and CEO have put measures in place to extend and improve fundraising. The Trustees have considered the level of funds held and the expected level of income and expenditure for 12 months following the approval of these financial statements. The trustees have initiated a strategic review which will lead to the utilisation of excess reserves to improve and extend our activities.

Income Recognition

Income represents income attributable to the activities of the Charity when the Charity becomes entitled to the donation or similar income and any conditions for receipt are met, and the trustees are reasonably certain that they will receive it and the value can be reliably measured. Grants received without any restriction on entitlement are recognised in full upon award.

Legacy gifts are recognised following the granting of probate when the Charity has been notified in writing of both the amount and settlement date.

Donated professional services or facilities are recognised as income when the Charity has control over the item, any conditions associated with the donated item have been met , the receipt of economic benefit from the use of the item is probable and that economic benefit can be measured reliably. In accordance with the Charities SORP (FRS 102), the general volunteer time of our team of volunteers is not recognised.

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MDS UK PATIENT SUPPORT GROUP

Interest on funds held on deposit is included when receivable and the amount can be measured reliably. All the charity's investment income arises from money held in interest bearing deposit accounts regulated by the Prudential Regulating Authority and covered by the Government's Financial Services Compensation Scheme (FSCS).

Resources expended

Liabilities are recognised as soon as there is a legal or constructive obligation committing the Charity to that expenditure, it is probable that settlement will be required and amount of the obligation can be measured reliably. All expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all costs related to the category. Irrecoverable VAT is reported as part of the expenditure to which it relates.

Research Grants

Grants payable are payments made to third parties in furtherance of the charitable objects of the charity. In the case of an unconditional grant offer this is accrued once the recipient has been notified of the grant award. Provisions for grants are made where there is uncertainty as to the timing of the grant or the amount of grant payable.

Charitable activities

Costs of charitable activities includes expenditure incurred in the delivery of activities and services for beneficiaries and all the support costs as shown in note 10.

Governance costs

Governance costs comprise all costs involving public accountability of the Charity and its compliance with regulation and good practice. These costs include legal and professional fees and the costs of the AGM and governance meetings.

Corporation Tax

The Charity is exempt from tax on income and gains falling within section 505 of the Taxes Act 1988 or section 252 of the Taxation of Chargeable Gains Act 1992 as any surplus or gains are applied for charitable purposes.

Reserves

The Trustees have reviewed the policy on reserves considering the uncertainties around the impact of Covid 19 on our income and expenditure in the short and medium term. The Trustees have decided to use reserves to maintain our service levels and to meet new demands.

Cash flow Statement

Due to its size, the charity is not required to present a Cash flow Statement under the Financial Reporting standards.

14

MDS UK PATIENT SUPPORT GROUP

Unaudited notes to the financial statements as at 31st March 2023

2) Trustees' Remuneration

The charity reimbursed Kings College Hospital Trust for emoluments of £34,913 and pension and NI contributions of £7,780 in respect of Sophie Wintrich, the Chief Executive. The other trustees neither received or waived any emoluments. The charity meets the expenses incurred by trustees in carrying out their duties. During the year no trustees had expenses met by the charity.

3) Donations, legacies and similar incoming resources.

Donations (including Gift Aid)
Legacies
4) Grants
Takeda
Novartis
Janssen
5) Investment Income
Bank Interest Received
6) Costs of raising funds
Advertising and promotion
Consultant
Event Costs
Donor database development/maintenance
Allocated staff costs
7) Expenditure on charitable activities
Information and advocacy
Helpline
Local Patient support groups
National Forum
Conferences/representation
Patients survey
Website/social media
Clinical trials/advisory
Support costs
Note 11
8) Analysis of total expenditure
Reimbursed staff costs (1 secondee)
Salary,NI & pensions
Note 9
Website
Literature and Information Sheets
Myelo's Hope MDS Animation
Local Support Groups
Survey
Conference Participation
Other costs
Governance costs
Note 12
Fundraising costs
Note 6		 2023
£
119,364
260,000
379,364
0
0
0
4,075
2,139
-
16,678
3,602
17,500
39,919
20,273
25,878
20,438
9,065
11,373
824
30,271
7,747
38,298
164,166
34,913
95,797
14,900
-
-
-
18,556
32
39,919
204,117		 2022
£
102,959
308,253
411,212
650
472
1,122
700
-
-
4,214
1,410
15,380
21,004
10,628
13,566
10,714
4,752
5,962
432
15,869
4,061
20,077
86,061
42,693
43,793
10,080
-
-
-
4,875
35
5,624
107,100

Page 15

MDS UK PATIENT SUPPORT GROUP

Unaudited notes to the financial statements as at 31st March 2023

9) Staff Costs and Emoluments

Salaries
Social security costs
Pension costs		 2023
£
81,541
12,142
6,875
100,558		 2022
£
38,918
3,282
1,593
43,793

10) Research Grant

Following a formal selection process Queens University Belfast was chosen to receive the first scientific research grant from the Charity to improve treatment for Myelodysplastic Syndrome. The Charity awarded a grant of £173,046 to fund a four year PHD programme. A provision for the full am for the full amount of the grant was made in accordance with the Charities SORP (FRS 102). The project wa The unused portion of £1300.75 has been recognised -n these accounts.

ort Costs
Payroll costs
Stationery and postage
Telephone and broadband
Office computer and software
Recruitment
Sundry expenses
Allocated administration costs
rnance costs
AGM & governance meetings
ion
The CIO is a registered charity with no liability to tax arising in the yea
ors
Gift Aid Recoverable
Prepayments
Other
nt asset investments
Nationwide Building Society Deposit
CCLA Charities Deposit
Charity Bank Deposit
Co-Op Instant Access
Hampshire Trust
Redwood Bank Deposit
Scottish Widows Deposit		 2023
£
0
57
1,634
828
6,235.20
576
32,833
42,163
32
r.
0
0
1,328
1,328
-
86,143
30,028
3,061
88,380
85,000
85,282
377,894		 2022
£
523
192
1,386
1,812
600
362
15,202
20,077
35
1,937
7,450
-
9,387
-
84,613
30,028
65
88,159
85,000
84,995
372,860

11) Support Costs

12) Governance costs

13) Taxation

14) Debtors

15) Current asset investments

16) Creditors

Paye
Pension provider
Accruals
s
Balance at 1st April 2022
Surplus for the year
Unrestricted income funds at 31st March 2023		 560
5,466
6,027
606,264
197,930
804,194		 269
10,773
11,042
189,937
416,327
606,264

17) Funds

Page 16