Trustees’ Annual Report for the period
From 6 April 2023 to 5 April 2024
Charity name: UK Infantile Spasms Trust
Charity registration number: 1172167
Objectives and Activities
| SORP reference | ||
|---|---|---|
| Summary of the purposes of the charity as set out in its governing document |
Para 1.17 | The purpose of the charity is to provide a relief of the needs of those suffering from Infantile Spasms or West Syndrome, as well as promote awareness and support clinical research into infantile spasms. |
| Summary of the main activities in relation to those purposes for the public benefit, in particular, the activities, projects or services identified in the accounts. |
Para 1.17 and 1.19 |
As follows but not exclusively: a) The provision of information, advice and other assistance and support to children, parents, families and carers of those affected by Infantile Spasms b) The promotion of research into the causes and treatment of Infantile Spasms and the publication of useful results of this research c) Raising the awareness of the public and of the medical professions on any matter relating to the charity objectives |
| Statement confirming whether the trustees have had regard to the guidance issued by the Charity Commission on public benefit |
Para 1.18 | n/a |
Additional information (optional) You may choose to include further statements where relevant about:
Policy on social investment including program related investment Other
Achievements and Performance
| SORP reference | ||
|---|---|---|
| Summary of the main achievements of the charity, identifying the difference the charity’s work has made to the circumstances of its beneficiaries and any wider benefits to society as a whole. |
Para 1.20 | The charity provides support to around 1300 families with children affected by Infantile Spasms. This includes sharing information, education, support and grants. It also improves the awareness of the symptoms of Infantile Spasms across the general public as well as within medical professions. The charity also supports the advancement of clinical research into the condition to help children suffering now and in the future. |
Additional information (optional) You may choose to include further statements where relevant about:
| Achievements against objectives set |
Para 1.41 | Achieving |
|---|---|---|
| Performance of fundraising activities against objectives set |
Para 1.41 | Achieving |
| Investment performance against objectives |
Para 1.41 | Profit is made annually therefore achieved |
| Other |
Financial Review
| Financial Review | ||
|---|---|---|
| Review of the charity’s financial position at the end of the period |
Para 1.21 | Financial position remains strong. Cash in bank allocated to future year budget, with sufficient funds to cover run costs. |
| Statement explaining the policy for holding reserves stating why they are held |
Para 1.22 | A significant percentage of the reserves currently held in the bank account have been ring-fenced for the imminent investment in a UKIST-owned primary healthcare education package which will roll out UK wide throughout 2024 and beyond (final payment for project is pending completion of work, expected H2 2024). |
| Amount of reserves held | Para 1.22 | £ 104,494.00 |
| Reasons for holding zero reserves |
Para 1.22 | n/a |
| Details of fund materially in deficit |
Para 1.24 | n/a |
| Explanation of any uncertainties about the charity continuing as a going concern |
Para 1.23 | None |
Additional information (optional)
You may choose to include further statements where relevant about:
| The charity’s principal sources of funds (including any fundraising) |
Para 1.47 | The charity’s principal source of funds is from donations and fundraising events. |
|---|---|---|
| Investment policy and objectives including any social investment policy adopted. |
Para 1.46 | None |
| A description of the principal risks facing the charity |
Para 1.46 | Insufficient donations are made to keep the charity afloat. This doesn’t seem to have been an issue in the accounting year and even through COVID previously. |
| Other |
Structure, Governance and Management
| Description of charity’s trusts: |
||
|---|---|---|
| Type of governing document | Para 1.25 | Charitable Incorporated Organisation (CIO) |
| How is the charity constituted? |
Para 1.25 | Trust/CIO |
| Trustee selection methods including details of any constitutional provisions e.g. election to post or name of any person or body entitled to appoint one or more trustees |
Para 1.25 | Appointed by trustees normally at AGM |
Additional information (optional)
You may choose to include further statements where relevant about:
| Policies and procedures adopted for the induction and training of trustees |
Para 1.51 | • Charity Commission learning material (The essential trustee: what you need to know, what you need to do) • DBS check • NSPCC safeguarding course • NVCO membership for ongoing Trustee support & guidance |
|---|---|---|
| The charity’s organisational structure and any wider network with which the charity works |
Para 1.51 | n/a |
| Relationship with any related parties |
Para 1.51 | n/a |
| Other | n/a |
Reference and Administrative details
| Charity name | UK Infantile Spasms Trust |
|---|---|
| Other name the charity uses | n/a |
| Registered charity number | 1172167 |
| Charity’s principal address | 28 Overnhill Road Downend Bristol BS16 5DN |
Names of the charity trustees who manage the charity
| 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 |
Trustee name | Office (if any) | Dates acted if not for whole year | Name of person (or body) entitled to appoint trustee (if any) |
|---|---|---|---|---|
| Michelle Scoffield | Treasurer | |||
| Jennifer Rawling | Chair | |||
| Louisa Coyle | ||||
| Alice Goldhill | ||||
| Samia Sanders | ||||
| AmyDowding | ||||
| Louise Derbyshire | Appointed 26 March 23 | |||
| Susan Blackburn | Appointed 24 February24 | UKIST AGM - Trustees | ||
| KellySkinner | Appointed 24 February24 | UKIST AGM - Trustees | ||
| Chloe Cox | Appointed 24 February24 | UKIST AGM - Trustees | ||
Funds held as custodian trustees on behalf of others
Description of the assets None held in this capacity Name and objects of the None charity on whose behalf the assets are held and how this falls within the custodian charity’s objects Details of arrangements for None safe custody and segregation of such assets from the charity’s own assets
Additional information (optional)
Names and addresses of advisers (Optional information)
| Names and addresses of advisers (Optional information) | Names and addresses of advisers (Optional information) | Names and addresses of advisers (Optional information) |
|---|---|---|
| Type of adviser Name Address |
||
| Accountants | Norton Accountancy Ltd |
7 Soundwell Road, Staple Hill, Bristol BS16 4QG |
Name of chief executive or names of senior staff members (Optional information)
Not applicable
Exemptions from disclosure
Reason for non-disclosure of key personnel details
Not applicable
Other optional information
Further information on 2023-2024 progress can be found here - UKIST-update-2024.pdf (ukinfantilespasmstrust.org)
Declarations
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees
Signature(s) Full name(s) Sarah Jenkins ~~a~~ Position (eg Secretary, Advisor Chair, etc) ~~ee~~ Date 16.1.25 ~~Pp~~
Unaudited profit and loss report
for
UK Infantile Spasms Trust Year ended 5 April 2024
Prepared: 21st May 2024 Finalised: 12th June 2024 By Norton Accountancy Ltd
ACCOUNTS FOR UKIST
FOR THE PERIOD ENDED 5 APRIL 2024
ACCOUNTANTS CERTIFICATE
We have prepared the attached accounts, without audit from the records and information supplied to us, and we confirm that they are in accordance therewith.
| Jane Norton FMAAT | Date |
|---|---|
| Norton Accountancy | |
| Licence no. 0521 | |
| CLIENT'S SIGNATURE | |
| I have read the accounts prepared by Norton Accountancy and approve the figures | |
| S Blackburn | |
| Signed | Date |
| M Scoffield | |
| Signed | Date |
UKIST
Profit & loss statement Year ended 5 April 2024
| Income Donations received Grants Expenditure Accountancy Bank charges Grants Family support Insurance Training and research Subs Promotional items Printing, postage & stationary Admin Sponsorship Sundry Social media & website Profit for the year |
£ £ £ £ 44,248 23,820 - - 44,248 23,820 600 - 40 - 11,583 8,165 1,784 1,213 441 439 793 270 446 216 1,585 725 293 103 1,889 2,827 4,152 1,597 136 269 92 200 23,833 16,024 20,415 7,796 2024 2023 |
|---|---|
Independent examiner's report on the accounts
Section A Independent Examiner’s Report
| Report to the trustees/ members of |
Charity Name UK Infantile Spasms Trust |
||
|---|---|---|---|
| On accounts for the year | 5thApril 2024 | Charity no | 1172167 |
| ended | (if any) | ||
| Set out on pages | 1+2 | ||
| I report to the trustees on my examination of the accounts of the above | |||
| charity (“the Trust”) for the year ended 05/04/2020. | |||
| Responsibilities and | As the charity's trustees, you are responsible for the preparation of the | ||
| basis of report | accounts in accordance with the requirements of the Charities Act 2011 | ||
| (“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 Directions given by the Charity Commission under section 145(5)(b) of the Act.
-
Independent I have completed my examination. I confirm that no material matters have
-
examiner's statement come to my attention in connection with the examination which gives me cause to believe that in, any material respect:
-
the accounting records were not kept in accordance with section 130 of the Charities Act; or
-
the accounts did not accord with the accounting records; or
-
the accounts did not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair’ view which is not a matter considered as part of an independent examination.
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.
|Signed:||Date:16.1.25
~~|~~|Date:16.1.25
~~|~~|
|---|---|---|---|
|Name:|SARAH JENKINS|||
|||||
|Relevant professional|FMAAT|||
|qualification(s) or body|qualification(s) or body|||
|||||
|Address:|Norton Accountancy Ltd|||
||7 Soundwell Road|||
||Bristol BS16 4QG|||
Oct 2018
1
IER
Section B Disclosure
Only complete if the examiner needs to highlight material matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners).
Give here brief details of any items that the examiner wishes to disclose .
None – the charity appears to be well run with no concerns.
Oct 2018
2
IER