National Down Syndrome Policy Group CHANGINGTHE NARRATIVE National Down S drome Polic Grou Annual Re ort for the ear ended 31 March 2025 Doc ID." 251190cfff561a6f672b59541edc886a1e7f4a83
National Down Syndrome Policy Group
Contents
Trustees’ Report for the period ended 31 March 2025………………………….………………………………1 Independent Examiner’s Report……………………………………………………………………………………5 Receipts and Payments for the period ended 31 March 2025………………………………………………….6 Statement of Assets and Liabilities for the year ended 31 March 2025……………………………………….7 Notes to the Financial Statements for the period ended 31 March 2025……………………………………...8
Doc ID: 251190cfff561a6f672b59541edc886a1c7f4a83
National Down Syndrome Policy Group
Trustees’ Report and Financial Statements period ended 31 March 2025
Introduction
We are pleased to produce the annual reports and accounts for the National Down Syndrome Policy Group (NDSPG). The past Year has been a very busy for the NDSPG as we continue to engage with government and the civil services around the guidance in relation to the Down Syndrome Act 2022. Many of our members and trustees have been engaged with policymakers about the form and content of the guidance.
We continue to expand our Advisory Group networks and are delighted at the formation of dedicated groups in Cheshire and Cornwall; we look forward to the creation of additional groups elsewhere in the UK. We were also very pleased to hold our inaugural summit of the Advisory Group, hosted by law firm A&O Shearman in central London on 27[th] March 2025.
This report provides details on our aims and highlights some of the activities undertaken to achieve them.
In addition, as Chair, I am hugely grateful for the dedicated and passionate work carried out by all of our group members, who tirelessly work to improve the lives of people with Down syndrome.
Objects
To relieve the needs of people with Down syndrome, their parents, families, and carers, in England, Scotland and Wales, in particular but not exclusively by:
A) The provision of forums to facilitate discussion between people with Down syndrome, organisations that represent them, and organisations that provide support, care, or services to people with Down syndrome.
B) The collation and dissemination of information and best practice in the support of people with Down syndrome in accessing services, in particular, but not exclusively, in maternity care, healthcare, education, housing, social care and employment.
C) The provision of support to Local Support Groups to facilitate closer networking and help improve knowledge and skills with the aim of helping them be more effective in the work they do.
Activities
We are delighted that the work of the NDSPG has been supported by over 125 Down syndrome regional and national organisations and thousands of individuals.
The NDSPG is further supported by an Advisory Group consisting of over 120 members who meet regularly and actively feed into our work. This is the only policy group led by people with Down syndrome in the UK .
The NDSPG continues to create and support additional Advisory Groups across the UK. Advisory Groups directly address the first of our objects and they develop forums for adults with Down syndrome to gather – either in person or online – to discuss a wide range of topics.
Over its first year as a charitable organisation, the NDSPG has created additional Advisory Groups across the UK. Advisory Groups directly address the first of our objects, and they develop forums for adults with Down syndrome to gather—either in person or online—to discuss a wide range of topics.
We have been actively working with Ministers, the Department of Health and Social Care and the Department of Education to create guidance for the Down Syndrome Act, which is discussed in more detail below.
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National Down Syndrome Policy Group
Trustees’ Report and Financial Statements period ended 31 March 2025
How our activities deliver public benefit
All our charitable activities focus on relieving the needs of people with Down syndrome, their parents, families, and carers in England, Scotland and Wales.
We were pleased to see the successful enactment of the Down Syndrome Act in 2022, which received Royal Assent on 28 April 2022, to improve access to services and life outcomes for people with Down’s syndrome. The Act requires the government to develop and consult on guidance that authorities must have regard to when providing specific health, social care, education and housing services. The NDSPG has been working with the civil service to shape the formulation of the guidance to the Act. Representatives of the NDSPG have participated in a formal working group led by the Department of Health and Social Care (DHSC). Working in collaboration with the DHSC, the NDSPG also created several online and in-person forums for adults with Down syndrome to help shape the content for guidance.
The direct involvement of people with Down syndrome in the discussions around the guidance's shape is essential to its success, and we are delighted to have facilitated this. Below, we provide more detail on the specifics of our achievement.
Achievements and performance
The following highlights activities of the charity and the Advisory Group:
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The NDSPG is the Secretariat for the All-Party Parliamentary Group on Down Syndrome (APPGDS). In line with the dissolution of Parliament for the elections on 4[th] July 2024, the APPGDS was also formally closed but was reformed at the inaugural meeting on 8[th] October 2024. We are delighted that Damian Hinds MP and Andrew Cooper MP agreed to co-chair the APPG. Further meetings took place in November 2024, January and March 2025. Minutes of -
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the meetings can be found at https://appg ds.org/minutes/.
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The APPG covered topics such as the case for including Down syndrome within the education census, progress on the guidance to the Down Syndrome Act, the Assisted Dying Bill, DSspecific training. Members of the Advisory Group of the NDSPG presented at these meetings.
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We were also very pleased to hold our inaugural summit of the Advisory Group, hosted by law firm A&O Shearman in central London on 27th March 2025. The words of Ed Daly, one of our speakers on the day summarised the event beautifully: “I felt connected to everyone and afterwards I was happy to hear that members were inspired to find their local ICB and work with them to make the Act meaningful and powerful. The atmosphere at the Summit was buzzing with special friendship and a mission to help improve the lives of everyone with Down syndrome.”
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National Down Syndrome Policy Group
Trustees’ Report and Financial Statements period ended 31 March 2025
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Civil servants and NDSPG trustees frequently met, with additional ad hoc meetings regarding the content and progress of the Down Syndrome Act guidance and other relevant policies.
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Agreement for Down syndrome to be part of the annual school census, commencing in January 2025.
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On March 4th, 2025, we held our fourth annual awareness reception in Westminster. It was a fantastic turnout, with over 150 advocates and Down syndrome charity leaders attending from all over the UK.
Financial review
The opening balance of the accounts as at 31 March 2024 was £20,532. During the period under review, the charity accumulated income of £1,624 and incurred expenditure of £8,718. Expenses for the Advisory Group totalled £7,409 with administration for the World Down Syndrome Day being the main source of expense at £2,440. National travel costs for the AG totalled £1,090. In addition, £1,237 was spent on IT services relating to website and email, the same amount incurred by NDSPG. The closing balance in the account at the end of the period was £13,438.
Reserves Policy
While we are happy to have been granted funds to support the Advisory Group’s activity, we recognise the need to build up non-restricted reserves. Given the charity's ‘virtual’ nature, the most significant costs relate to updating the website and email communications.
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National Down Syndrome Policy Group
Trustees’ Report and Financial Statements period ended 31 March 2025
Structure, governance and management
The NDSPG’s governing document is a foundation-based constitution, and the organisation is constituted as a Charitable Incorporated Organisation (“CIO”). The first charity trustees were appointed via the creation of the CIO. Apart from the first charity trustees, every trustee must be appointed for three years by a resolution passed at a properly convened meeting of the charity trustees.
The trustees meet regularly—typically every other week—via Zoom. All trustees are involved in critical decisions facing the charity. Decisions regarding the day-to-day management of social media are delegated to a communications committee. Similarly, day-to-day implementation and facilitation of the Advisory Group are delegated to a subgroup.
Reference and administrative details
Charity name: National Down Syndrome Policy Group, also called NDSPG. Charity number: 1204298
Registered address: PO Box 576, Tunbridge Wells, TN2 9WJ
Trustees in office for the duration of the reporting period
Peter Brackett Chair Nicola Enoch Vice Chair Rachael Ross MBE Co-Treasurer Ken Ross OBE Co-Treasurer Dr Elizabeth Corcoran Lucienne Cooper Caroline Warren
Trustees appointed after the year end
Julie Duff - appointed 27 May 2025 Angie Emrys-Jones - appointed 27 May 2025 Lynn Murray - appointed 27 May 2025 Jonathan Angus - appointed 19 August 2025 Thomas Angus - appointed 19 August 2025
Exemptions from disclosure
No exemptions were applied for this report.
Funds held as custodian trustee on behalf of others.
This is not applicable.
Declarations
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees:
P Brackett - Trustee
Date 28 / 08 / 2025
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National Down Syndrome Policy Group
Independent Examiner’s Report to the Trustees on the Unaudited Financial Statements of the National Down Syndrome Policy Group
I report to the Trustees on my examination of the financial statements of the National Down Syndrome Policy Group for the year ended 31 March 2025 set out on pages 6 to 9.
Respective responsibilities of trustees and examiner
As the charity’s trustees you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (the 2011 Act).
It is my responsibility to:
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examine the accounts under Section 145 of the 2011 Act
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to follow the procedures laid down in the General Directions given by the Charity Commission (under Section 145(5)(b) of the 2011 Act); and
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to state whether particular matters have come to my attention.
Basis of the independent examiner’s report
My examination was carried out in accordance with the General Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently no opinion is given as to whether the accounts present a ‘true and fair view ‘ and the report is limited to those matters set out in the statements below.
Independent examiner’s statement
In connection with my examination, no matter has come to my attention:
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(1) which gives me reasonable cause to believe that, in any material respect, the requirements
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to keep accounting records in accordance with Section 130 of the 2011 Act; and
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- to prepare accounts which accord with the accounting records and to comply with the accounting requirements of the 2011 Act
have not been met; or
- (2) to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.
Mrs J D Watts FCCA, ACA James Todd & Co Furzehall Farm 110 Wickham Road Fareham Hampshire PO16 7JH
Date: 03 / 09 / 2025
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National Down Syndrome Policy Group
Receipts and Payments for the period ended 31 March 2025
| Donations Grants Total receipts Expenditure in furtherance of the objects of the charity Governance and support costs of the Charity Total Payments Excess of Receipts over Payments Bank accounts at 31 March 2024 Bank accounts at 31 March 2025 |
Notes 2 2 3 4 |
Unrestricted 1,624 - |
Total Total Restricted 2025 2024 - 1,624 540 - - 19,974 |
|
|---|---|---|---|---|
| 1,624 | - 1,624 20,514 |
|||
| 1,309 - |
6,554 7,863 2,467 855 855 - |
|||
| 1,309 | 7,409 8,718 2,467 |
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| 315 558 |
(7,409) (7,094) 18,047 19,974 20,532 2,485 |
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| 873 | 12,565 13,438 20,532 |
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National Down Syndrome Policy Group
Statement of Assets and Liabilities as at 31 March 2025
| Funds at Bank Total Funds Approved by the trustees on _____ P _____ J 28 / 08 / 2025 |
Unrestricted 873 |
Restricted 2025 2024 12,565 13,438 20,532 |
|
|---|---|---|---|
| 873 | 12,565 13,438 20,532 |
||
| and signed on its behalf. Brackett - TRUSTEE Duff – TRUSTEE |
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National Down Syndrome Policy Group
Notes to the financial statements for the period ended 31 March 2025
ACCOUNTING POLICIES
Basis of Preparation of Accounts
The financial statements are prepared on a receipts and payments basis and incorporate the results of the principal activity which is described in the trustees report and which is continuing.
The accounts have been prepared in accordance with the Charities Act 2011, and with applicable Accounting Standards and the Statement of Recommended Practice.
Donations and Grants
Donations are recognised in the accounts when they are received. Donations and grants are recognised as restricted or unrestricted as required.
Expenditure
Resources expended are accounted for on a payments basis.
Govnernance Costs
Only those costs specifically identified as for the administration and management of the charity are included in the accounts as such costs.
2. DONATIONS AND GRANTS
| Donations Grants HARITABLE ACTIVITIES Admin support External practitioner costs Insurance Subscriptions WDSD 2025 event Travel IT software and consumables |
2025 1,624 - 1,624 2025 488 650 320 402 2,440 1,090 2,473 |
2024 540 19,974 20,514 2024 - - - - 1,127 - 1,340 |
2024 540 19,974 20,514 2024 - - - - 1,127 - 1,340 |
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|---|---|---|---|---|---|---|
| 7,863 | 2,467 |
3. CHARITABLE ACTIVITIES
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National Down Syndrome Policy Group
Notes to the financial statements for the period ended 31 March 2025
4. GOVERNANCE COSTS
| Accountancy Bank charges |
2025 840 15 855 |
2024 - - |
||
|---|---|---|---|---|
| - |
5. ANALYSIS OF NET ASSETS BETWEEN FUNDS
| Fixed Assets Current Assets Current Liabilities MOVEMENT IN FUNDS Unrestricted Funds General Fund Restricted Funds Advisory Group |
2025 Unrestricted - 873 - |
2025 Unrestricted - 873 - |
2025 Restricted - 12,565 - |
2025 Restricted - 12,565 - |
Total 2025 - 13,438 - |
Total 2024 - 20,532 - |
||
|---|---|---|---|---|---|---|---|---|
| 873 | 12,565 | 13,438 | 20,532 | |||||
| At 1.4.24 558 19,974 |
Incoming 1,624 - |
Resources (1,309) (7,409) |
At 31.3.25 873 12,565 |
|||||
| 20,532 | 1,624 |
(8,718) |
13,438 |
RESTRICTED FUND – NATIONAL DOWN SYNDROME ADVISORY GROUP
The National Down Syndrome Advisory Group is comprised of over 120 adults with Down syndrome from across the UK who meet regularly and work the National Down Syndrome Policy Group. Led by individuals with Down syndrome who are successful advocates in their own right, the group shares lived experiences to influence policy and shape government guidance, including the Down Syndrome Act. They advise MPs, take part in consultations, present and contribute regularly to the All-Party Parliamentary Group on Down Syndrome, and advocate for meaningful inclusion in education, healthcare, employment, and social care, working to ensure improved outcomes for people with Down syndrome.
6. TRANSACTIONS WITH TRUSTEES
The charity’s trustees do not receive remuneration or expenses.
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National Down Syndrome Policy Group Registered Charity No. 1204298 Principal Office: PO Box 576, Tunbridge Wells, TN2 9WJ
James Todd and Co Furzehall Farm 110 Wickham Road Fareham Hampshire PO16 7JH
Dear Sirs
During the course of your independent examination of the financial statements of the Charity for the period ended 31 March 2025, the following representations were made to you buy management and trustees.
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We have fulfilled our responsibilities as trustees under the Charities Act 2011, for preparing financial statements, in accordance with the applicable financial reporting framework (FRS102 Charity SORP), that give a true and fair view and for making accurate representations to you for the financial statements which you have prepared on our behalf for the Charity.
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We confirm that all accounting records have been made available to you for the purpose of your independent examination, in accordance with your terms of engagement, and that all the transactions undertaken by the Charity have been properly reflected and recorded in the accounting records. All other records and related information, including minutes of all management, trustees’ and members’ meetings have been made available to you. We have given you unrestricted access to persons within the Charity in order to obtain your evidence and have provided any additional information that you have requested for the purposes of your examination.
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We confirm that significant assumptions used by us in making accounting estimates, including those measured at fair value, are reasonable.
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We confirm that all known actual or possible litigation and claims whose effects should be considered when preparing the financial statements have been disclosed to you and accounted for and disclosed in accordance with the applicable financial reporting framework.
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We confirm there have been no events since the balance sheet date which require disclosure or which would materially affect the amounts in the financial statements, other than those already disclosed or included in the financial statements.
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We confirm that we are aware that a related party of the Charity is a person or organisation with either (directly or indirectly) controls, has joint control of, or significantly influences the Charity or vice versa and as a result will include trustees, other key management, close family and other business interests of the previous. We confirm that the related party relationships and transactions set out below are a complete list of such relationships and transactions and that we are not aware of any further related parties or transactions.
| Party P Brackett N Enoch R Ross K Ross Dr E Corcoran L Cooper C Warren |
Relationship Trustee Trustee Trustee Trustee Trustee Trustee Trustee |
Nature of transaction |
|---|---|---|
| None None None None None None None |
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We confirm that all related party relationships and transactions have been accounted for and disclosed in accordance with the applicable financial reporting framework.
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We confirm that the Charity has had, at no time during the year, any arrangement transaction or agreement to provide credit facilities (including advances and credits granted by the Charity) for trustees, nor to provide guarangtees of any kind on behalf of the trustees.
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We confirm that the Charity has not contracted for any capital expenditure other than as disclosed in the financial statements.
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We confirm that we are not aware of any possible or actual instance of non-compliance with those laws and regulations which provide a legal framework within which the Charity conducts its activities and which are cenral to the Charity’s ability to conduct its activities, except as explained to you in the financial statements.
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We acknowledge our responsibility for the design and implementation of internal controls to prevent and detect fraud. We confirm that we have disclosed to you the results of our own risk assessment that the financial statements may be misstated as a result of fraud.
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We confirm that there have been no actual or suspected instances of fraud involving trustees, management or employees who have a significant role in internal control or that could have a material effect on the financial statements. We also confirm that we are not aware of any allegations of fraud by former trustees, employees, regulators or others.
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We confirm that, having considered our expectations and intentions for the next 12 months and the availability of unrestricted reserves, the Charity is a going concern.
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We confirm that all grants, donations and other income, including those subject to special terms or conditions or received for restricted purposes, have been notified to you. There have been no breaches of terms or conditions during the period regarding the application of such income.
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We confirm that we are not aware of any matters of material signficance that should be reported to the Charity Commission.
We confirm that the above representations are made on the basis of enquiries of management and staff with relevant knowledge and experience (and, where appropriate of supporting documetnation) sufficient to satisfy us that we can property make each of the above representations to you and that to the best of our knowledge and belief they accurately reflect the representations made to you by the trustees during the course of your audit.
Yours faithfully
28 / 08 / 2025 ………………………………… ………………………… P Brackett – Trustee Date Signed on behalf of the Board of Trustees
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