## **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|
||||||
||||||
||||||
||||||
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## **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**