## MDS UK PATIENT SUPPORT GROUP
**Unaudited Financial Statements Year ended 31st March 2024**
_**Registered Charity Number: 1145214**_
## **MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
**Index Page Number Description 2 - 9 Report of the Trustees 10 Unaudited Statement of Financial Activities 11 Unaudited Balance Sheet 12 - 19 Unaudited Notes to the Financial Statements**
Page | 1
**MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
The trustees submit their report together with the financial statements for the year ending 31st March 2024.
## **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**
The Board of Trustees of MDS UK believes the organisation is, at the end of March 2024, as strong as it has ever been.
Our objectives remain clear – to improve the lives of all those affected by MDS or CMML – and our strategic activities are now aligned to do this. Huge thanks are due to Debbie Hickman, our Interim CEO, and her small team for their work in supporting patients and their families, and for developing relations with a wider group of specialist haematologists, together with all the fundraising, communications and administration work necessary to support this, all of which are set out in the Chief Executive’s report below.
I am sorry to report that Fiona Pirilla, our former secretary, died last year, as did Andy Veitch. Andy led the Kent Patient Support Group, was a committee member and CIO member of MDS UK, and for a while was acting chair before ill-health meant he had to step down. They both gave their support and service to MDS patients and both are sadly missed. My condolences to their families and all families who have lost loved ones to MDS or CMML during the past year.
Ted Peel, formerly chairman of trustees of MDS UK, resigned in March this year as a result of illness, but I am delighted that he remains involved in our work as one of our Patrons. Thank you also to John Evason and Alastair Day for their support, both of whom retired as trustees during the last year. We have been fortunate to have recruited a number of new trustees in recent months, who each bring something special to the Board and MDS UK. As a result I feel confident about the board’s continued ability to lead the organisation through the next few years as we develop our support to MDS and CMML patients and their families.
Page | 2
## **MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
I must end by thanking all our volunteers, including our trustees, for their work in supporting our organisation and our members, and on behalf of MDS UK I send my best wishes to all our members, patients and their families as we continue to provide support to assist them in dealing with the personal consequences of their condition.
Tony Allen Chair MDS UK Patient Support Group June 2024
## **Our purpose and activities**
The Charity’s principal activities during year under review relate to the support of individuals suffering Myelodysplastic Syndrome (“MDS”), which is a rare blood cancer. The activities were previously carried on by a trust with the same name and were taken over by the company with effect from 1[st] April 2012.
The objects of the Charity are:
(i) To relieve the sickness and preserve, promote and protect the health of suffers of MDS in the United Kingdon
(ii) To advance the education of the general public in the United Kingdon in all areas in relation to MDS.
(iii) To promote and support scientific research into MDS and its treatment together with the care of MDS suffers and those disposed to the development of MDS
## **Report of the Chief Executive**
## **Objectives and achievements**
## **1.Charitable Purpose**
MDS UK’s charitable purpose has two main strands:
**The provision of support** to those affected by rare blood cancers MDS and CMML, including patients, their families and caregivers.
**To represent MDS and CMML** within the clinical community; raising awareness, supporting drug and clinical research by providing patient expertise, and through affiliation with other blood cancer organisations and agencies at both national and international levels.
To fulfil these objectives, the charity’s main activities include:
at patient/user level:
- Maintaining and growing a secure database of members
- Outreach to newly-diagnosed MDS/CMML patients and their families
- Facilitating member support meetings
Page | 3
**MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
- Circulating important information and regular e-newsletters to members
- Facilitating online, subject-specific forums and Q & As, with guest speakers
- Maintaining an up-to-date, user-friendly website and social media platforms
- Producing up-to-date patient information, factsheets and membership packs
- Providing a helpline and signposting service by telephone and email
- Managing fundraising activities; liaising with, encouraging and supporting fundraisers including attending major events.
within the wider MDS community:
- Liaison/co-operation with partner/affiliate charities
- Representation of charity at national and international level
- Supporting and promoting clinical research
- Representation at conferences and forums.
## **2. Achievements in 2023/4**
The charity’s main achievements in this financial year have been:
- Introduction of a new telephone system to improve helpline management
- The design and development of a new database (phase 1 BETA version currently being tested, expected to be fully implemented June/July 2024)
- An increased number of speaker-led presentations and member participation
- Increased member numbers, both of main charity and private Facebook support group
- The appointment of a Project Worker to work with Interim CEO in improving clinician engagement, reviewing and improving services to members, and conducting a full audit of all patient literature and website content to ensure it is fit for purpose.
- Support and liaison for clinical trials REPAIR-MDS (Warwick University Clinical Trials Dept) and ASCELUS-H (Itecho – development of app for haematology patients)
- Publishing a revised edition of the MDS Patient Guide, in conjunction with Leukaemia Care
- Moving to new office premises to improve working conditions for staff
- A full website audit and formulation of a plan for future restructuring
- ‘Quick win’, in-house improvements to website content, speed and navigation
- Participation in national and international initiatives including Blood Cancer Awareness Month, MDS World Awareness Day; exhibited at British Society of Haematology conference.
Page | 4
## **MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
- Participation in major charity fundraising events including Great North Run, Kiltwalk, and Cabbage Patch.
## **3. Operations**
Following a period of illness and bereavement, CEO Sophie Wintrich took extended leave from April 2023 to October 2023 and subsequently resigned from the post (previously a secondment from Kings College Hospital but now been brought in-house). The Interim CEO was appointed in May 2023 to oversee operations during the CEO’s absence and continues to steer the charity until a permanent replacement is found (recruitment is underway April 2024).
A Risk and Audit sub-committee was established in 2023/24 and has undertaken a full review of the charity’s financial arrangements and governance. Quarterly meetings of the R & AC take place, which include ongoing reviews of the charity’s risk register, policies and procedures.
## **4. Priorities for the charity in 2024/25**
- Appoint a permanent Chief Executive Officer
- Continue to review and update all information factsheets
- Expand outreach activities, to engage more clinicians and grow membership
- Introduce member focus groups to identify further needs
- Agree policy on funding and supporting research projects
- Consider and implement new branding and logo
- Complete test of new database, with implementation of Phase I by July 2024
- Identify requirements for Phase II of new database
- Implement changes from full website audit, delete and rewrite content as necessary
- Review structure of current website and consider full replacement
- Review and agree upon fundraising strategy going forward.
Debbie Hickman, Interim CEO June 2024
Page | 5
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
## **Financial review**
The following figures were taken from the full accounts approved on 30[th] August 2024. 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 - £133,420 Money spent - £226,050.
## **Money received: sources of funds**
We received donations of £100,108 from members of the public and relatives of patients. This was a decrease of 16.13% compared to last year.
We received a small number of legacy receipts, £25,867, We are extremely grateful to those who choose to recognise the work of the charity in this way.
## **Money spent:**
Expenditure for the year of £226,050 (£204,117 - 2022/23). This year’s accounts report the costs of each of our charitable activities. The comparative figures are restated accordingly.
The deficit for the year of (£92,627) has been subtracted from the unrestricted reserves which now amount to £710,264. Our reserves are required to protect the charity from unexpected shocks and to be used to increase our support for patients and their families in line with our strategic objectives.
## **Going concern**
At the time of this report, partly as a result of a number of large and unforeseen legacies received, MDS UK had unrestricted cash assets in excess of its liabilities, budget and contingency requirements. The trustees continue to develop plans to ensure that those resources are used to enhance and expand its services to its beneficiaries in accordance with its charitable objects.
Page | 6
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
## **Reference and administrative details**
Charity number: 1145214 Registered Office: The Old Court House, New Road Avenue, Chatham, Kent, ME4 6BEJ Office Address: Unit B.2 The Fuel Tank, 8-12 Creekside, London, SE8 3DX
## **Our Advisors**
Examiner: Orchard Accountants, The Old Court House, New Road Avenue, Chatham, Kent, ME4 6BEJ
## **Bankers:**
CAF Bank Ltd (Charities Aid Foundation) Co-Operative Bank Ltd Insignis Cash
## **Trustees**
The trustees serving during the year and since the year end were as follows: Russell Cook Claudia Richards Tony Allen Lin Holder John Evason (resigned 1 December 2023) Alastair Day (resigned 6 October 2023 Edward Peel (resigned 31 March 2024) Sophie Wintrich (resigned 28th April 2023) Chris Dugmore (appointed 20 March 2023 Sirat Bhalla (appointed 10 January 2024 Keith Hackett (appointed 8 March 2024) Jen Goodison (appointed 8 March 2024 Atashia Gonsalves (appointed 21 March 2024
## **Key management personnel:**
Chief Executive: Debbie Hickman - Interim CEO
Page | 7
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
## **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 twelve.
## **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 charities preparing their accounts in accordance with the Financial Reporting standards (FRS 102) for Smaller Entities. Under charity law trustees must not approve the financial statements unless they give a
Page | 8
## **MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
true and fair view of the state of affairs of the charity and of the incoming resources and outgoing resources of the charity for that period
In preparing these financial statements, the trustees are required to:
- I. select suitable accounting policies and then apply them consistently.
- II. observe the methods and principles in the Charities Statement of Recommended Practice (SORP)
- III. make judgements and accounting estimates that are reasonable and prudent.
- IV. prepare the financial statements on the 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 that are sufficient to show and explain the charity’s transactions and disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Charities Act 2011. 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 corporate and financial information included on the charitable company’s website.
This report has been prepared in accordance with the provisions applicable to charities.
By Order of the board of Trustees
Tony Allen (Chair) Date 30[th] August 2024
## **Registered Charity Number: 1145214**
Page | 9
## **MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
|**Income from**
**Note**
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/deficit**
**Reconciliation of funds**
Total funds bought forward
**Total funds carried forward**|**2024**
**2023**
£
£
**Total**
**Total**
100,108 119,364
25,864 260,000
-
-
5,907 4,075
1,541 18,608|
|---|---|
||**133,420 402,047**
56,514 39,919
169,428 164,166
108
32|
||**226,050 204,117**
- 1,301
(92,630) 196,630|
||802,894 606,264
**710,264**
**802,894**|
Page | 10
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
|**Note**
**Non-current assets**
Office furniture and fittings
**Current assets**
Debtors
14
Current asset investments
15
Cash in bank and in hand
**Liabilities: Amounts falling due within one year**
Creditors and accruals
16
Total Net Assets
**The Funds of the Charity**
**Unrestricted Income Funds**
17
**Total Funds**|2024
£
**Total**
8,172
1,097
656,684
50,338
9,267|2023
£
**Total**
-
1,328
377,894
429,699
6,027|
|---|---|---|
||707,024|
802,894|
||**707,024**|
**802,894**|
||**707,024**|
**802,894**|
||**707,024**|
**802,894**|
Page | 11
**MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
**Unaudited notes to the financial statements as at 31st March 2024**
## **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 The Old Court House, New Road Avenue, Chatham, Kent ME4 6BA. 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.
Page | 12
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
## **Unaudited notes to the financial statements as at 31st March 2024**
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**
No further research grants were agreed during the period of these accounts.
## **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.
Page | 13
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
**Unaudited notes to the financial statements as at 31st March 2024**
## **Reserves**
The Trustees have reviewed the policy on reserves and our reserves are required to protect the charity from unexpected shocks and to be used to increase support for patients and their families in line with our strategic objectives.
## **Cash flow statement**
Due to its size, the charity is not required to present a Cash flow Statement under the Financial Reporting standards.
## **2) Trustees’ Remuneration**
The charity reimbursed King's College University Hospital Trust for emoluments of £15,820 in total for pension and employers' National Insurance in respect of Sophie Wintrich, the former 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 one trustee had expenses met by the charity for £15.
|Note
**3) Donations, legacies and similar incoming**
**resources**
Donations (including Gift Aid)
Legacies
Other income (honorarium received)
**4) Grants**
No grant income was received
**5) Investment income**
Investment and bank interest received|2024
2023
£
£
100,108
119,634
25,864
260,000
1,541
-|
|---|---|
||127,513
379,364|
||-
-
5,907
4,075|
Page | 14
## **MDS UK PATIENT SUPPORT GROUP**
## **Report of the Trustees for the year ended 31[st] March 2024**
## **6) Cost of raising funds**
|Advertising and promotion
Consultant
Event costs
Donor database development/maintenance
Fundraising platform commission
Allocated staff costs
**7) Expenditure on charitable activities**
Information and advocacy and outreach
Helpline
Local patient support groups
National forum
Conferences/representation
Patient survey
Website/social media
Clinical trials/advisory
Support costs|-
2,139
2,675
-
1,575
16,678
22,043
3,602
563
-
29,658
17,500|
|---|---|
||56,514
39,919|
||21,964
20,273
17,067
25,878
7,500
20,438
-
9,065
943
11,373
-
824
22,043
30,271
-
7,747
100,019
38,298|
||169,536
164,167|
Page | 15
## **MDS UK PATIENT SUPPORT GROUP**
## **Report of the Trustees for the year ended 31[st] March 2024**
## **8) Analysis of total expenditure**
|Reimbursed staff costs (1 secondee to 11 Aug 2024)
Salary, NI and pensions
9
Rent and business rates
Website
Conference participation
Other costs
Governance costs
Fundraising costs
Legal expenses
**9) Staff costs and emoluments**
Salaries
Social security costs
Pension costs
**10) Research grant**
No further grants had been provided
10
**11) Governance costs**
AGM and governance meetings|15,810
34,913
108,653
95,797
13,157
-
22,043
14,900
943
-
25,497
18,556
108
32
33,085
39,919
6,754
-|
|---|---|
||226,050
204,117|
||102,594
81,541
3,917
12,142
2,142
6,875|
||108,653
100,558|
||-
-
108
32|
## **12) Taxation**
The CIO is a registered charity with no tax liability arising in the year
Page | 16
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
## **13) Debtors**
|Gift Aid Recoverable
Other
**14) Current asset investments**
Insignis Cash|4,337
-
-
1,328|
|---|---|
||4,337
1,328|
||656,684
377,894|
Page | 17
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
|**16) Creditors**
HMRC
Pension provider
Accruals
**17) Funds**
Balance at 1st April 2023
Surplus/deficit for the year|3,535
-
640
560
5,092
5,466
9,267
6,026
802,894
606,264
(92,630)
196,630|
|---|---|
||710,264
802,894|
Page | 18
## MDS UK PATIENT SUPPORT GROUP
**Unaudited Financial Statements Year ended 31st March 2024**
_**Registered Charity Number: 1145214**_
## **MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
**Index Page Number Description 2 - 9 Report of the Trustees 10 Unaudited Statement of Financial Activities 11 Unaudited Balance Sheet 12 - 19 Unaudited Notes to the Financial Statements**
Page | 1
**MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
The trustees submit their report together with the financial statements for the year ending 31st March 2024.
## **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**
The Board of Trustees of MDS UK believes the organisation is, at the end of March 2024, as strong as it has ever been.
Our objectives remain clear – to improve the lives of all those affected by MDS or CMML – and our strategic activities are now aligned to do this. Huge thanks are due to Debbie Hickman, our Interim CEO, and her small team for their work in supporting patients and their families, and for developing relations with a wider group of specialist haematologists, together with all the fundraising, communications and administration work necessary to support this, all of which are set out in the Chief Executive’s report below.
I am sorry to report that Fiona Pirilla, our former secretary, died last year, as did Andy Veitch. Andy led the Kent Patient Support Group, was a committee member and CIO member of MDS UK, and for a while was acting chair before ill-health meant he had to step down. They both gave their support and service to MDS patients and both are sadly missed. My condolences to their families and all families who have lost loved ones to MDS or CMML during the past year.
Ted Peel, formerly chairman of trustees of MDS UK, resigned in March this year as a result of illness, but I am delighted that he remains involved in our work as one of our Patrons. Thank you also to John Evason and Alastair Day for their support, both of whom retired as trustees during the last year. We have been fortunate to have recruited a number of new trustees in recent months, who each bring something special to the Board and MDS UK. As a result I feel confident about the board’s continued ability to lead the organisation through the next few years as we develop our support to MDS and CMML patients and their families.
Page | 2
## **MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
I must end by thanking all our volunteers, including our trustees, for their work in supporting our organisation and our members, and on behalf of MDS UK I send my best wishes to all our members, patients and their families as we continue to provide support to assist them in dealing with the personal consequences of their condition.
Tony Allen Chair MDS UK Patient Support Group June 2024
## **Our purpose and activities**
The Charity’s principal activities during year under review relate to the support of individuals suffering Myelodysplastic Syndrome (“MDS”), which is a rare blood cancer. The activities were previously carried on by a trust with the same name and were taken over by the company with effect from 1[st] April 2012.
The objects of the Charity are:
(i) To relieve the sickness and preserve, promote and protect the health of suffers of MDS in the United Kingdon
(ii) To advance the education of the general public in the United Kingdon in all areas in relation to MDS.
(iii) To promote and support scientific research into MDS and its treatment together with the care of MDS suffers and those disposed to the development of MDS
## **Report of the Chief Executive**
## **Objectives and achievements**
## **1.Charitable Purpose**
MDS UK’s charitable purpose has two main strands:
**The provision of support** to those affected by rare blood cancers MDS and CMML, including patients, their families and caregivers.
**To represent MDS and CMML** within the clinical community; raising awareness, supporting drug and clinical research by providing patient expertise, and through affiliation with other blood cancer organisations and agencies at both national and international levels.
To fulfil these objectives, the charity’s main activities include:
at patient/user level:
- Maintaining and growing a secure database of members
- Outreach to newly-diagnosed MDS/CMML patients and their families
- Facilitating member support meetings
Page | 3
**MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
- Circulating important information and regular e-newsletters to members
- Facilitating online, subject-specific forums and Q & As, with guest speakers
- Maintaining an up-to-date, user-friendly website and social media platforms
- Producing up-to-date patient information, factsheets and membership packs
- Providing a helpline and signposting service by telephone and email
- Managing fundraising activities; liaising with, encouraging and supporting fundraisers including attending major events.
within the wider MDS community:
- Liaison/co-operation with partner/affiliate charities
- Representation of charity at national and international level
- Supporting and promoting clinical research
- Representation at conferences and forums.
## **2. Achievements in 2023/4**
The charity’s main achievements in this financial year have been:
- Introduction of a new telephone system to improve helpline management
- The design and development of a new database (phase 1 BETA version currently being tested, expected to be fully implemented June/July 2024)
- An increased number of speaker-led presentations and member participation
- Increased member numbers, both of main charity and private Facebook support group
- The appointment of a Project Worker to work with Interim CEO in improving clinician engagement, reviewing and improving services to members, and conducting a full audit of all patient literature and website content to ensure it is fit for purpose.
- Support and liaison for clinical trials REPAIR-MDS (Warwick University Clinical Trials Dept) and ASCELUS-H (Itecho – development of app for haematology patients)
- Publishing a revised edition of the MDS Patient Guide, in conjunction with Leukaemia Care
- Moving to new office premises to improve working conditions for staff
- A full website audit and formulation of a plan for future restructuring
- ‘Quick win’, in-house improvements to website content, speed and navigation
- Participation in national and international initiatives including Blood Cancer Awareness Month, MDS World Awareness Day; exhibited at British Society of Haematology conference.
Page | 4
## **MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
- Participation in major charity fundraising events including Great North Run, Kiltwalk, and Cabbage Patch.
## **3. Operations**
Following a period of illness and bereavement, CEO Sophie Wintrich took extended leave from April 2023 to October 2023 and subsequently resigned from the post (previously a secondment from Kings College Hospital but now been brought in-house). The Interim CEO was appointed in May 2023 to oversee operations during the CEO’s absence and continues to steer the charity until a permanent replacement is found (recruitment is underway April 2024).
A Risk and Audit sub-committee was established in 2023/24 and has undertaken a full review of the charity’s financial arrangements and governance. Quarterly meetings of the R & AC take place, which include ongoing reviews of the charity’s risk register, policies and procedures.
## **4. Priorities for the charity in 2024/25**
- Appoint a permanent Chief Executive Officer
- Continue to review and update all information factsheets
- Expand outreach activities, to engage more clinicians and grow membership
- Introduce member focus groups to identify further needs
- Agree policy on funding and supporting research projects
- Consider and implement new branding and logo
- Complete test of new database, with implementation of Phase I by July 2024
- Identify requirements for Phase II of new database
- Implement changes from full website audit, delete and rewrite content as necessary
- Review structure of current website and consider full replacement
- Review and agree upon fundraising strategy going forward.
Debbie Hickman, Interim CEO June 2024
Page | 5
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
## **Financial review**
The following figures were taken from the full accounts approved on 30[th] August 2024. 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 - £133,420 Money spent - £226,050.
## **Money received: sources of funds**
We received donations of £100,108 from members of the public and relatives of patients. This was a decrease of 16.13% compared to last year.
We received a small number of legacy receipts, £25,867, We are extremely grateful to those who choose to recognise the work of the charity in this way.
## **Money spent:**
Expenditure for the year of £226,050 (£204,117 - 2022/23). This year’s accounts report the costs of each of our charitable activities. The comparative figures are restated accordingly.
The deficit for the year of (£92,627) has been subtracted from the unrestricted reserves which now amount to £710,264. Our reserves are required to protect the charity from unexpected shocks and to be used to increase our support for patients and their families in line with our strategic objectives.
## **Going concern**
At the time of this report, partly as a result of a number of large and unforeseen legacies received, MDS UK had unrestricted cash assets in excess of its liabilities, budget and contingency requirements. The trustees continue to develop plans to ensure that those resources are used to enhance and expand its services to its beneficiaries in accordance with its charitable objects.
Page | 6
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
## **Reference and administrative details**
Charity number: 1145214 Registered Office: The Old Court House, New Road Avenue, Chatham, Kent, ME4 6BEJ Office Address: Unit B.2 The Fuel Tank, 8-12 Creekside, London, SE8 3DX
## **Our Advisors**
Examiner: Orchard Accountants, The Old Court House, New Road Avenue, Chatham, Kent, ME4 6BEJ
## **Bankers:**
CAF Bank Ltd (Charities Aid Foundation) Co-Operative Bank Ltd Insignis Cash
## **Trustees**
The trustees serving during the year and since the year end were as follows: Russell Cook Claudia Richards Tony Allen Lin Holder John Evason (resigned 1 December 2023) Alastair Day (resigned 6 October 2023 Edward Peel (resigned 31 March 2024) Sophie Wintrich (resigned 28th April 2023) Chris Dugmore (appointed 20 March 2023 Sirat Bhalla (appointed 10 January 2024 Keith Hackett (appointed 8 March 2024) Jen Goodison (appointed 8 March 2024 Atashia Gonsalves (appointed 21 March 2024
## **Key management personnel:**
Chief Executive: Debbie Hickman - Interim CEO
Page | 7
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
## **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 twelve.
## **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 charities preparing their accounts in accordance with the Financial Reporting standards (FRS 102) for Smaller Entities. Under charity law trustees must not approve the financial statements unless they give a
Page | 8
## **MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
true and fair view of the state of affairs of the charity and of the incoming resources and outgoing resources of the charity for that period
In preparing these financial statements, the trustees are required to:
- I. select suitable accounting policies and then apply them consistently.
- II. observe the methods and principles in the Charities Statement of Recommended Practice (SORP)
- III. make judgements and accounting estimates that are reasonable and prudent.
- IV. prepare the financial statements on the 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 that are sufficient to show and explain the charity’s transactions and disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Charities Act 2011. 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 corporate and financial information included on the charitable company’s website.
This report has been prepared in accordance with the provisions applicable to charities.
By Order of the board of Trustees
Tony Allen (Chair) Date 30[th] August 2024
## **Registered Charity Number: 1145214**
Page | 9
## **MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
|**Income from**
**Note**
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/deficit**
**Reconciliation of funds**
Total funds bought forward
**Total funds carried forward**|**2024**
**2023**
£
£
**Total**
**Total**
100,108 119,364
25,864 260,000
-
-
5,907 4,075
1,541 18,608|
|---|---|
||**133,420 402,047**
56,514 39,919
169,428 164,166
108
32|
||**226,050 204,117**
- 1,301
(92,630) 196,630|
||802,894 606,264
**710,264**
**802,894**|
Page | 10
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
|**Note**
**Non-current assets**
Office furniture and fittings
**Current assets**
Debtors
14
Current asset investments
15
Cash in bank and in hand
**Liabilities: Amounts falling due within one year**
Creditors and accruals
16
Total Net Assets
**The Funds of the Charity**
**Unrestricted Income Funds**
17
**Total Funds**|2024
£
**Total**
8,172
1,097
656,684
50,338
9,267|2023
£
**Total**
-
1,328
377,894
429,699
6,027|
|---|---|---|
||707,024|
802,894|
||**707,024**|
**802,894**|
||**707,024**|
**802,894**|
||**707,024**|
**802,894**|
Page | 11
**MDS UK PATIENT SUPPORT GROUP**
**Report of the Trustees for the year ended 31[st] March 2024**
**Unaudited notes to the financial statements as at 31st March 2024**
## **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 The Old Court House, New Road Avenue, Chatham, Kent ME4 6BA. 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.
Page | 12
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
## **Unaudited notes to the financial statements as at 31st March 2024**
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**
No further research grants were agreed during the period of these accounts.
## **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.
Page | 13
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
**Unaudited notes to the financial statements as at 31st March 2024**
## **Reserves**
The Trustees have reviewed the policy on reserves and our reserves are required to protect the charity from unexpected shocks and to be used to increase support for patients and their families in line with our strategic objectives.
## **Cash flow statement**
Due to its size, the charity is not required to present a Cash flow Statement under the Financial Reporting standards.
## **2) Trustees’ Remuneration**
The charity reimbursed King's College University Hospital Trust for emoluments of £15,820 in total for pension and employers' National Insurance in respect of Sophie Wintrich, the former 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 one trustee had expenses met by the charity for £15.
|Note
**3) Donations, legacies and similar incoming**
**resources**
Donations (including Gift Aid)
Legacies
Other income (honorarium received)
**4) Grants**
No grant income was received
**5) Investment income**
Investment and bank interest received|2024
2023
£
£
100,108
119,634
25,864
260,000
1,541
-|
|---|---|
||127,513
379,364|
||-
-
5,907
4,075|
Page | 14
## **MDS UK PATIENT SUPPORT GROUP**
## **Report of the Trustees for the year ended 31[st] March 2024**
## **6) Cost of raising funds**
|Advertising and promotion
Consultant
Event costs
Donor database development/maintenance
Fundraising platform commission
Allocated staff costs
**7) Expenditure on charitable activities**
Information and advocacy and outreach
Helpline
Local patient support groups
National forum
Conferences/representation
Patient survey
Website/social media
Clinical trials/advisory
Support costs|-
2,139
2,675
-
1,575
16,678
22,043
3,602
563
-
29,658
17,500|
|---|---|
||56,514
39,919|
||21,964
20,273
17,067
25,878
7,500
20,438
-
9,065
943
11,373
-
824
22,043
30,271
-
7,747
100,019
38,298|
||169,536
164,167|
Page | 15
## **MDS UK PATIENT SUPPORT GROUP**
## **Report of the Trustees for the year ended 31[st] March 2024**
## **8) Analysis of total expenditure**
|Reimbursed staff costs (1 secondee to 11 Aug 2024)
Salary, NI and pensions
9
Rent and business rates
Website
Conference participation
Other costs
Governance costs
Fundraising costs
Legal expenses
**9) Staff costs and emoluments**
Salaries
Social security costs
Pension costs
**10) Research grant**
No further grants had been provided
10
**11) Governance costs**
AGM and governance meetings|15,810
34,913
108,653
95,797
13,157
-
22,043
14,900
943
-
25,497
18,556
108
32
33,085
39,919
6,754
-|
|---|---|
||226,050
204,117|
||102,594
81,541
3,917
12,142
2,142
6,875|
||108,653
100,558|
||-
-
108
32|
## **12) Taxation**
The CIO is a registered charity with no tax liability arising in the year
Page | 16
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
## **13) Debtors**
|Gift Aid Recoverable
Other
**14) Current asset investments**
Insignis Cash|4,337
-
-
1,328|
|---|---|
||4,337
1,328|
||656,684
377,894|
Page | 17
**MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2024**
|**16) Creditors**
HMRC
Pension provider
Accruals
**17) Funds**
Balance at 1st April 2023
Surplus/deficit for the year|3,535
-
640
560
5,092
5,466
9,267
6,026
802,894
606,264
(92,630)
196,630|
|---|---|
||710,264
802,894|
Page | 18
CHARITY COMMISSION
FOR ENGLAND AND WALES
Independent examiner's report on the
accounts
Section A
Independent Examinef s Report
Report to the trustees
Chanty NamÈ
MDS UK PATIENT SUPPORT GROUP
On accounts for the year
ended
31 MARCH 2024
Charity no
(if any)
1145214
Set out on pages
Iber lo ile Ihe page nuffjbe of additional sheelsl
I report to the trustees on my examination of the accounts of the above
charity ("the Trust") for the year ended 3110312024.
Responsibilities and
basis of report
As the charitys trustees. you are responsible for the prepaiation of the
accounts in accordance with the requirements of the Charities Acl 2011
(-the Act.).
I report in respect of my examination of the Trust's accounls carried OLrt
under section 145 of the 2011 Act and in carrwng out my examination. I
have followed all the applicable Directions given by the Charity Commission
under section 145(5Xb) of the Act.
Independent The charity's gross income exceeded £250,000 and l am qualified to
examinerfs statement undertake the examination by being a qualified member of The Association
of Chartered Certified Accountants.
I have completed my examination. I confimi that no material matters have
come to my attention in nneCtion with the examination.
Signed:
Date:
Namo:
MR OLUFEMI ALAKIJA FCCA
Relevant professional
qualification(s) or body
(if any):
ASSOCIATION OF CHARTERED CERTIFIED ACCOUNTANTS
Address:
THE OLD COURT HOUSE
NEW ROAD AVENUE
CHATHAM KENT ME4 68E
Section B
Disclosure
only complete ,,1 the examip.er needs lo h.IghliJhl material matters of concern
(see CC32. Independent examination of charity aGcounls.' directions and
guidance for examiners).
IER
Oct 2018
Give here brief details of
any items that the
examiner wishes to
disclose.
Not applicable.
IER
Oct 2018