MDS UK PATIENT SUPPORT GROUP
Unaudited Financial Statements Year ended 31st March 2025
Registered Charity Number: 1145214
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
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 2025
The trustees submit their report together with the financial statements for the year ending 31st March 2025.
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
These are exciting times for MDS UK. The board of trustees are delighted to have appointed Blossom Bell as our CEO. Under her leadership, our small team continues to develop its range of support services, all designed to improve the lives of all those affected by MDS.
Blossom will continue and develop the important work undertaken by Debbie Hickman, our former Interim CEO, in supporting patients and their families, and for enhancing relations with a wider group of specialist haematologists, Significant challenges remain for a small charity such as ours particularly with fund-raising but also in providing support with such a small resource base for our communications and administration work, and the board will support Blossom to ensure that her strategic vision remains clear. Debbie has stood down from her role but continues to provide support. Many thanks to Debbie for her work over the last three years in first stabilising and then developing the work of MDS UK.
I have to thank all our volunteers, including our trustees, for their work in supporting our organisation and our members. Special thanks should go to Lin Holder who has been at the forefront of so many of the improvements to the back office systems, and gives freely of her time and energy. 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.
On a personal level, after four years of very rewarding work with the board and staff, the time is right for change both for me and the organisation and I will be stepping down before the next AGM.
Tony Allen Chair MDS UK Patient Support Group August 2025
Page | 2
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
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
1. Charitable Purpose
MDS UK’s charitable purpose has two main strands:
-
To inform, support and empower all 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:
a) 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
-
Circulating 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 literature and membership packs
-
Providing a helpline and signposting service, by telephone and email
-
Fundraising activities; liaising with, encouraging and supporting fundraisers including attending major events. Using fundraising activities to raise awareness of MDS and CMML
b) 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.
Page | 3
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
2. Achievements in 2024/25
The charity’s main achievements in this financial year have been:
-
Continued support and liaison for clinical trials REPAIR-MDS (Warwick University Clinical Trials Dept) and ASCELUS-H (Itecho – development of app for haematology patients)
-
Providing funding and PPIE support for a new clinical study into the efficacy of Vitamin B5 to rescue red blood cell production in myelodysplasia
-
The development and successful implementation of a new donor and member database
-
Appointment of a retired Oncology and Nutrition CNS to help with member support
-
• A successful programme of speaker-led presentations and online support meetings
-
‘Quick win’, in-house improvements to website content, speed and navigation, and preparation for a new website in 2025/26
-
Participation in national and international initiatives including Blood Cancer Awareness Month, MDS World Awareness Day; British Society of Haematology Conference, and the first MDS World Alliance in-person conference in Frankfurt.
-
Design and dissemination of global MDS patient and caregiver survey
-
Increased member numbers, both of main charity and private Facebook support group
-
Participation in major charity fundraising events including Great North Run, Kiltwalk, and Cabbage Patch, raising funds but also increasing awareness of the conditions
-
Participation in PPIE initiatives, including with Cambridge Centre for Cancer Research Genomics project guidelines.
-
Appointment of several new Trustees with experience in governance, compliance, security and fundraising.
-
The appointment of a new CEO, Blossom Bell, to take up the post on 1[st] May 2025.
3. Priorities for 2025/26
-
Work closely with government health bodies, blood cancer, rare cancer and MDS alliances to ensure MDS and CMML are considered with the NHS 10 Year Plan and Cancer plan
-
Establish direct relationships with pharmaceutical companies to develop new treatments
-
Support earlier diagnosis, and consistency/quality of diagnosis delivery in MDS and CMML
-
Introduce patient-centric workshops and training to increase psychological support
-
Re-introduce in-person meetings and extend these to specialist centres around the UK.
-
Conduct a full review and update of all patient literature, factsheets and website content
Page | 4
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
-
Conduct a full audit to ensure GDPR compliance and donor data security
-
Commission and implement a new website
-
Complete Phase II functionality in new database Investigate opportunities with the NIHR to fun/part-fund educational bursaries and fellowships specifically for research into MDS/CMML
Debbie Hickman Interim CEO August 2025
Page | 5
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
Financial review
The following figures were taken from the full accounts approved on 30[th] August 2025. 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 - £254,314 Money spent - £305,408.
Money received: sources of funds
We received donations of £123.094 from members of the public and relatives of patients. This was an increase of almost 23% compared to last year.
We received legacy receipts, £92,024, 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 £305,408 (£226,050 – 2023/2024). 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 (£53,754) has been subtracted from the unrestricted reserves which now amount to £656,510. 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 2025
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 Jen Goodison Atashia Gonsalves Maeve MacRory (appointed 13 April 2024) Rev. Kes Grant (appointed 6 December 2024) Lynda Harris (appointed 3 March 2025) Chris Dugmore (resigned 12 March 2024) Sirat Bhalla (resigned 18 September 2024) Keith Hackett (resigned 20 May 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 2025
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. Page | 8
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
Under charity law trustees must not approve the financial statements unless they give a 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 2025
Registered Charity Number: 1145214
Page | 9
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
| Income from Note Donations and similar incoming resources 3 Legacies 3 Investment income 5 Other income Total income Expenditure on Raising funds 6 Charitable activities 7 Governance costs 12 Total expenditure 8 Net income/deficit Reconciliation of funds Total funds bought forward Total funds carried forward |
2025 2024 £ £ Total Total 123.094 100,108 92,024 25,864 39,196 5,907 - 1,541 |
|---|---|
| 254,314 133,420 102,689 56,514 204,812 169,428 567 108 |
|
| 308,068 226,050 (53,754) (92,630) |
|
| 710,264 802,894 656,510 710,264 |
Page | 10
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
| 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 |
2025 £ Total 8,172 4,337 593,220 59,879 9,098 |
2024 £ Total 8,172 1,097 656,684 50,338 9,267 |
|---|---|---|
| 656,510 | 707,024 |
|
| 656,510 | 707,024 |
|
| 656,510 | 707,024 |
|
| 656,510 | 707,024 |
Page | 11
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025 Unaudited notes to the financial statements as at 31st March 2025
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 2025 Unaudited notes to the financial statements as at 31st March 2025
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
A research grant was made via Queen Mary’s Paddington for initial trials into the value of Vitamin 5b to support MDS patients with anaemia.
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 2025 Unaudited notes to the financial statements as at 31st March 2025
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
During the year no trustees had expenses, or payments, met by the charity
| Note 3) Donations, legacies and similar incoming resources Donations (including Gift Aid) Legacies Other income 4) Grants No grant income was received 5) Investment income Investment and bank interest received |
2025 2024 £ £ 123,094 100,108 92,024 25,864 - 1,541 |
|---|---|
| 215,118 127,513 |
|
| - - 39,196 5,907 |
Page | 14
MDS UK PATIENT SUPPORT GROUP
Report of the Trustees for the year ended 31[st] March 2025
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 Conferences/representation Website/social media Clinical trials/advisory Support costs |
2,612 - 1,375 2,675 3,753 1,575 26,134 22,043 2,669 563 34,700 29,658 |
|---|---|
| 71,243 56,514 |
|
| 25,398 21,964 19,968 17,067 8,715 7,500 2,048 943 31,962 22,043 - - 146,074 100,019 |
|
| 234,165 169,536 |
Page | 15
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
8) Analysis of total expenditure
| Reimbursed staff costs Salary, NI and pensions 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 Research grant for trials on Vitamin B5 11) Governance costs AGM and governance meetings 12) Taxation |
- 15,810 152,383 108,653 23,031 13,157 31,963 22,043 2,048 943 34,450 25,497 567 108 43,353 33,085 17,603 6,754 |
|---|---|
| 305,408 226,050 |
|
| 140,939 102,594 8,178 3,917 3,266 2,142 |
|
| 152,383 108,653 |
|
| 20,955 - 567 108 |
|
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 2025
13) Debtors
| Gift Aid Recoverable 14) Current asset investments Insignis Cash 15) Creditors HMRC Pension provider Accruals 16) Funds Balance at 1st April 2024 Surplus/deficit for the year |
4,337 1,097 |
|
|---|---|---|
| 4,337 1,097 |
||
| 593,220 656,684 |
||
| 3,535 3,535 640 640 4,923 5,092 9,098 9,267 710,264 802,894 (53,754) (92,630) 656,510 710,264 |
||
Page | 17
MDS UK PATIENT SUPPORT GROUP
Unaudited Financial Statements Year ended 31st March 2025
Registered Charity Number: 1145214
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
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 2025
The trustees submit their report together with the financial statements for the year ending 31st March 2025.
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
These are exciting times for MDS UK. The board of trustees are delighted to have appointed Blossom Bell as our CEO. Under her leadership, our small team continues to develop its range of support services, all designed to improve the lives of all those affected by MDS.
Blossom will continue and develop the important work undertaken by Debbie Hickman, our former Interim CEO, in supporting patients and their families, and for enhancing relations with a wider group of specialist haematologists, Significant challenges remain for a small charity such as ours particularly with fund-raising but also in providing support with such a small resource base for our communications and administration work, and the board will support Blossom to ensure that her strategic vision remains clear. Debbie has stood down from her role but continues to provide support. Many thanks to Debbie for her work over the last three years in first stabilising and then developing the work of MDS UK.
I have to thank all our volunteers, including our trustees, for their work in supporting our organisation and our members. Special thanks should go to Lin Holder who has been at the forefront of so many of the improvements to the back office systems, and gives freely of her time and energy. 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.
On a personal level, after four years of very rewarding work with the board and staff, the time is right for change both for me and the organisation and I will be stepping down before the next AGM.
Tony Allen Chair MDS UK Patient Support Group August 2025
Page | 2
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
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
1. Charitable Purpose
MDS UK’s charitable purpose has two main strands:
-
To inform, support and empower all 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:
a) 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
-
Circulating 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 literature and membership packs
-
Providing a helpline and signposting service, by telephone and email
-
Fundraising activities; liaising with, encouraging and supporting fundraisers including attending major events. Using fundraising activities to raise awareness of MDS and CMML
b) 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.
Page | 3
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
2. Achievements in 2024/25
The charity’s main achievements in this financial year have been:
-
Continued support and liaison for clinical trials REPAIR-MDS (Warwick University Clinical Trials Dept) and ASCELUS-H (Itecho – development of app for haematology patients)
-
Providing funding and PPIE support for a new clinical study into the efficacy of Vitamin B5 to rescue red blood cell production in myelodysplasia
-
The development and successful implementation of a new donor and member database
-
Appointment of a retired Oncology and Nutrition CNS to help with member support
-
• A successful programme of speaker-led presentations and online support meetings
-
‘Quick win’, in-house improvements to website content, speed and navigation, and preparation for a new website in 2025/26
-
Participation in national and international initiatives including Blood Cancer Awareness Month, MDS World Awareness Day; British Society of Haematology Conference, and the first MDS World Alliance in-person conference in Frankfurt.
-
Design and dissemination of global MDS patient and caregiver survey
-
Increased member numbers, both of main charity and private Facebook support group
-
Participation in major charity fundraising events including Great North Run, Kiltwalk, and Cabbage Patch, raising funds but also increasing awareness of the conditions
-
Participation in PPIE initiatives, including with Cambridge Centre for Cancer Research Genomics project guidelines.
-
Appointment of several new Trustees with experience in governance, compliance, security and fundraising.
-
The appointment of a new CEO, Blossom Bell, to take up the post on 1[st] May 2025.
3. Priorities for 2025/26
-
Work closely with government health bodies, blood cancer, rare cancer and MDS alliances to ensure MDS and CMML are considered with the NHS 10 Year Plan and Cancer plan
-
Establish direct relationships with pharmaceutical companies to develop new treatments
-
Support earlier diagnosis, and consistency/quality of diagnosis delivery in MDS and CMML
-
Introduce patient-centric workshops and training to increase psychological support
-
Re-introduce in-person meetings and extend these to specialist centres around the UK.
-
Conduct a full review and update of all patient literature, factsheets and website content
Page | 4
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
-
Conduct a full audit to ensure GDPR compliance and donor data security
-
Commission and implement a new website
-
Complete Phase II functionality in new database Investigate opportunities with the NIHR to fun/part-fund educational bursaries and fellowships specifically for research into MDS/CMML
Debbie Hickman Interim CEO August 2025
Page | 5
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
Financial review
The following figures were taken from the full accounts approved on 30[th] August 2025. 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 - £254,314 Money spent - £305,408.
Money received: sources of funds
We received donations of £123.094 from members of the public and relatives of patients. This was an increase of almost 23% compared to last year.
We received legacy receipts, £92,024, 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 £305,408 (£226,050 – 2023/2024). 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 (£53,754) has been subtracted from the unrestricted reserves which now amount to £656,510. 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 2025
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 Jen Goodison Atashia Gonsalves Maeve MacRory (appointed 13 April 2024) Rev. Kes Grant (appointed 6 December 2024) Lynda Harris (appointed 3 March 2025) Chris Dugmore (resigned 12 March 2024) Sirat Bhalla (resigned 18 September 2024) Keith Hackett (resigned 20 May 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 2025
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. Page | 8
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
Under charity law trustees must not approve the financial statements unless they give a 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:
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I. select suitable accounting policies and then apply them consistently.
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II. observe the methods and principles in the Charities Statement of Recommended Practice (SORP)
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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 2025
Registered Charity Number: 1145214
Page | 9
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
| Income from Note Donations and similar incoming resources 3 Legacies 3 Investment income 5 Other income Total income Expenditure on Raising funds 6 Charitable activities 7 Governance costs 12 Total expenditure 8 Net income/deficit Reconciliation of funds Total funds bought forward Total funds carried forward |
2025 2024 £ £ Total Total 123.094 100,108 92,024 25,864 39,196 5,907 - 1,541 |
|---|---|
| 254,314 133,420 102,689 56,514 204,812 169,428 567 108 |
|
| 308,068 226,050 (53,754) (92,630) |
|
| 710,264 802,894 656,510 710,264 |
Page | 10
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
| 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 |
2025 £ Total 8,172 4,337 593,220 59,879 9,098 |
2024 £ Total 8,172 1,097 656,684 50,338 9,267 |
|---|---|---|
| 656,510 | 707,024 |
|
| 656,510 | 707,024 |
|
| 656,510 | 707,024 |
|
| 656,510 | 707,024 |
Page | 11
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025 Unaudited notes to the financial statements as at 31st March 2025
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 2025 Unaudited notes to the financial statements as at 31st March 2025
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
A research grant was made via Queen Mary’s Paddington for initial trials into the value of Vitamin 5b to support MDS patients with anaemia.
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 2025 Unaudited notes to the financial statements as at 31st March 2025
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
During the year no trustees had expenses, or payments, met by the charity
| Note 3) Donations, legacies and similar incoming resources Donations (including Gift Aid) Legacies Other income 4) Grants No grant income was received 5) Investment income Investment and bank interest received |
2025 2024 £ £ 123,094 100,108 92,024 25,864 - 1,541 |
|---|---|
| 215,118 127,513 |
|
| - - 39,196 5,907 |
Page | 14
MDS UK PATIENT SUPPORT GROUP
Report of the Trustees for the year ended 31[st] March 2025
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 Conferences/representation Website/social media Clinical trials/advisory Support costs |
2,612 - 1,375 2,675 3,753 1,575 26,134 22,043 2,669 563 34,700 29,658 |
|---|---|
| 71,243 56,514 |
|
| 25,398 21,964 19,968 17,067 8,715 7,500 2,048 943 31,962 22,043 - - 146,074 100,019 |
|
| 234,165 169,536 |
Page | 15
MDS UK PATIENT SUPPORT GROUP Report of the Trustees for the year ended 31[st] March 2025
8) Analysis of total expenditure
| Reimbursed staff costs Salary, NI and pensions 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 Research grant for trials on Vitamin B5 11) Governance costs AGM and governance meetings 12) Taxation |
- 15,810 152,383 108,653 23,031 13,157 31,963 22,043 2,048 943 34,450 25,497 567 108 43,353 33,085 17,603 6,754 |
|---|---|
| 305,408 226,050 |
|
| 140,939 102,594 8,178 3,917 3,266 2,142 |
|
| 152,383 108,653 |
|
| 20,955 - 567 108 |
|
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 2025
13) Debtors
| Gift Aid Recoverable 14) Current asset investments Insignis Cash 15) Creditors HMRC Pension provider Accruals 16) Funds Balance at 1st April 2024 Surplus/deficit for the year |
4,337 1,097 |
|
|---|---|---|
| 4,337 1,097 |
||
| 593,220 656,684 |
||
| 3,535 3,535 640 640 4,923 5,092 9,098 9,267 710,264 802,894 (53,754) (92,630) 656,510 710,264 |
||
Page | 17
(HARITY (OMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Sectlon A Independent Examlnevs Report Report to the trusteos MDS UK PATIENT SUPPORT GROUP On accounts for the year 31 MARCH 2025 ended Charity no {if any) 1145214 Set out on pages Irememt* lo Include the page numbers ol addilion21 sheelsi I report lo the trustees on my examination of the accounts of the above charity {"the Trust") for the year ended 31103 12025. Responsibilities and basis of report As the charity's trustees, you are responsible for the preparation of the accourTrts in accordance wilh the requirements of the Charities Act 2011 1.the Act"). I report in respect of my examination of the Trust's accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Direclions given by the Charity Commission under seclion 1495Xb) of the Act. Independent The charity's gross income exceeded £250.000 and l am qualified lo examiner's statement undertake the examination by being a qualified member of The Association of Chartered Certified Accountants. I have completed my examination. I confimi Ihal no material matters have come to my attention in connection with the examination. Signed: Date: Name: 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 6BE Section B Disclosure Only complete il the examiner neees lo highlighl material mallers of conccrn (see CC32, Independent examination of charity accounts.. 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