To
Trustees' Annual Report for the period
Period start date Period end date 01 04 2022 31 03 2023
From
Section A Reference and administration details
Charity name British Association of Clinicians in ME/CFS (BACME) Other names charity is known by BACME Registered charity number (if any) 1193035 Charity's principal address TRACCS, Paediatric and Adolescent Department, University College Hospital London, 6th floor central, 250 Euston Road, London Postcode NW1 2PG
Names of the charity trustees who manage the charity
| 1 2 3 4 5 6 7 8 9 10 11 12 13 |
Trustee name | Office (if any) | Dates acted if not for whole **year ** |
Name of person (or body) entitled to appoint trustee (ifany) |
|---|---|---|---|---|
| Mrs Karen Anna Gregorowski |
Chair | BACME AGM | ||
| Mrs Christine Mary Oliver |
Deputy Chair & Treasurer |
Stepped down as treasurer at AGM 23-01- 2023 |
BACME AGM | |
| Ms Deborah Karen Roberts |
Board Secretary & Research executive |
BACME AGM | ||
| Dr Victoria Louise McKeever |
Information and communication executive |
01-04-2022 to 23-01- 2023 Stepped down at AGM |
BACME AGM | |
| Mrs Kirsty Northcott |
Training & Education executive |
BACME AGM | ||
| Mrs Ceridwen Rutter |
Patient & Public Involvement executive |
BACME AGM | ||
| Mrs Beverly Knopps |
Non-executive Trustee |
BACME AGM | ||
| Mrs Charlotte Joanna Adler |
Non-executive Trustee |
BACME AGM | ||
| Miss Rhonda Valerie Knight |
Non-executive Trustee(PPI) |
BACME AGM | ||
| Mr Les Parry | Non-executive Trustee(PPI) |
BACME AGM | ||
| Dr Marta Prytys | Non-executive Trustee |
BACME AGM | ||
| Mrs Katie Street | Non-executive Trustee |
BACME AGM | ||
| Dr Peter Gladwell | Non-executive Trustee |
BACME AGM |
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| 14 15 16 17 18 19 20 |
Mrs Deborah Gardner |
Non-executive Trustee |
01-04-2022 to 23-01- 2023 Stepped down at AGM |
BACME AGM |
|---|---|---|---|---|
| Mrs Louise Humphrey |
Non-executive Trustee |
Appointed by formal election at AGM 23rdJan 2023 |
||
| Mrs Fiona Mckechnie |
Non-executive Trustee |
Appointed by formal election at AGM 23rdJan 2023 |
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| Dr David Vickers | Executive Trustee | Appointed as executive treasure at AGM 23-01- 2023 |
Appointed by formal election at AGM 23rdJan 2023 |
|
| Dr Selwyn Richards |
Non-executive Trustee |
Appointed by formal election at AGM 23rdJan 2023 |
||
Names of the trustees for the charity, if any, (for example, any custodian trustees)
Name Dates acted if not for whole year
Names and addresses of advisers (Optional information)
Type of adviser Name Address
Name of chief executive or names of senior staff members (Optional information)
Section B Structure, governance and management
Description of the charity’s trusts
Constitution Type of governing document (eg. trust deed, constitution) Association How the charity is constituted (eg. trust, association, company)
Elected by members at AGM Trustee selection methods
- (eg. appointed by, elected by)
Additional governance issues (Optional information)
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Trustees undertake Trustee training on induction and participate in updates at Board development days held every 12-18 months.
You may choose to include additional information, where relevant, about:
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policies and procedures adopted for the induction and training of trustees;
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the charity’s organisational structure and any wider network with which the charity works;
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relationship with any related parties;
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trustees’ consideration of major risks and the system and procedures to manage them.
Trustee Training includes;
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BACME constitution including organisational purpose for the relief of sickness for public benefit.
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BACME Mission, Vision & Values
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The role of the Trustee in line with charity commission guidance.
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• Committee on Standards in Public Life. May 31[st] 1995. (https://www.gov.uk/government/publications/the-7-principles-ofpublic-life/the-7-principles-of-public-life--2)
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Organisational structure
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Management of declarations of interest.
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Awareness of the need to safeguard members and volunteers in line with NHS policy
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Finance- current and forecast, any potential risks and ring-fenced reserves.
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Regular updates regarding organisational relationships and activities with patient charities and statutory bodies-such as DHSC, DWP, NHSE.
Section C Objectives and activities
The relief of sickness for the public benefit by: 3.1 Championing clinically effective practice in treating ME/CFS and other primary fatigue conditions.
3.2 Disseminating of recent evidence and practice to clinical practitioners. Summary of the objects of the 3.3 Providing education and training for members respecting up-to-date charity set out in its evidence and best shared practice. governing document 3.4 Advocating for equity of access and excellence in the provision of services.
- 3.5 Facilitating networking amongst clinicians, researchers, and patients. 3.6 Advocating for and promoting relevant research and to publish all useful results arising from any research supported.
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3.1 Championing clinically effective practice in treating ME/CFS and other primary fatigue conditions.
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Webinar programme of monthly educational and supervision sessions
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• BACME new website Bacme.info includes guidance on clinically effective practice.
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• BACME conference 9[th] November 2023 • BACME bulletins
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BACME participation in DHSC national programme to improve care & experience of people living with ME/CFS and their carers.
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3.2 Disseminating of recent evidence and practice to clinical practitioners. • Webinar programme of monthly educational and supervision sessions
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• BACME new website Bacme.info launched September 2022 includes guidance on clinically effective practice.
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• BACME conference 9[th] November 2023 • BACME bulletins
Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)
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3.3 Providing education and training for members respecting up-todate evidence and best shared practice. • Webinar programme of monthly educational and supervision sessions
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• BACME new website Bacme.info launched September 2022 includes guidance on clinically effective practice and educational resources. New this year; Updated therapy guides, Care and support plan guidance and Primary care guidance.
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• BACME conference 9[th] November 2023 • BACME bulletins
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3.4 Advocating for equity of access and excellence in the provision of services
BACME advocates for equity in access and excellence in service provision through all its activities. This includes liaison with partner organisations and statutory bodies. Currently there is no nationally adopted clinical pathway or service specification for ME/CFS which has led to disparity in service provision as demonstrated by BACME national - services survey March 2019 https://bacme.info/wp content/uploads/2022/05/BACME-CFS-ME-National-services-surveyMarch19.pdf
BACME would be delighted to lead on the development of a national care pathway and service specification in collaboration with patient charities if funding for this important work can be sourced.
3.5 Facilitating networking amongst clinicians, researchers, and patients.
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Webinar programme of monthly educational and supervision sessions
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• BACME new website Bacme.info launched September 2022 includes guidance on clinically effective practice and educational
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resources. Includes member forums for discussion amongst peers.
- BACME conference 9[th] November 2023
3.6 Advocating for and promoting relevant research and to publish all useful results arising from any research supported.
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Webinar programme of monthly educational and supervision sessions.
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BACME new website Bacme.info launched September 2022 includes guidance on clinically effective practice and educational resources and back catalogue of all BACME bulletins.
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BACME conference 9[th] November 2023
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BACME bulletins include a round up of all recent research.
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Member mailings regarding opportunities to participate in research programmes.
All trustees have received training and have regard to the guidance issued by the Charity Commission on public benefit
Additional details of objectives and activities (Optional information)
BACME does not make grants BACME funds are invested solely in delivery of its objects and the running of the organisation. BACME Executive & non-Executive trustees are all volunteers.
You may choose to include further statements, where relevant, about:
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policy on grantmaking;
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policy programme related investment;
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contribution made by volunteers.
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Section D Achievements and performance
Address delivered by BACME Chair; Anna Gregorowski at the Summary of the main BACME AGM Jan 2023 achievements of the charity during the year It is again with great pleasure and pride to be here as BACME Chair to share the key achievements of the BACME Board and Executive team in 2022, all thanks to the creativity, dedication, hard work and passion of those on Board and other members who stepped forward and joined us on our successful and rewarding journey this past year. BACME has continued to deliver within the context of political change at home and abroad, and with ME/CFS and Long Covid populations and professionals working alongside and learning from each other in an extremely stretched NHS. This has led to challenges and opportunities. At the AGM in early 2022, BACME members agreed a name change to become the ‘British Association of Clinicians in ME/CFS’. This change occurred in response to the new NICE ME/CFS guideline and to more accurately describe who we are ‘clinicians’ and the context of specialist ME/CFS services we work in. From February, following a successful community lottery fund application, activity on our new website began. This has been a significant piece of work for BACME and our appointed external website team. BACME’s new website went live towards the end of September, a great achievement and much needed initiative. Alongside website work, BACME Board members were invited in April to join the Department of Health and Social Care workstreams linked with the new ME/CFS Delivery Plan, BACME has had representation on each of the working groups. Work on BACME’s Care and Support Plan templates, also in response to the new NICE ME/CFS guideline, began in February and completed with the launch of the care and support plan document in December. This initiative is in place to support people living with ME/CFS and professionals working in all services. Over the summer and linked with readiness for the new website going live, the Therapy Guide was updated in August and Symptom Guide in September. A Primary Care guideline was added in December. All are valuable resources soon to be joined by updated guidance for clinicians working with people living with severe and very severe ME/CFS. There has been the bonus of translations of the Post Viral Fatigue guide into five additional languages occurred in September. Another significant piece of work is updating the BACME National Services Survey, ongoing since July, with the DHSC joining this workstream in August. This survey is due to be launched soon, many thanks in anticipation for filling this out. We value your contributing to the work of BACME in this and other ways. BACME’s second virtual conference ‘Post Exertional Malaise and Beyond’ took place on 9 November 2022 and was a great success. Planning started in February and culminated in a day packed with patient contributions, high quality research, presentation of creative
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Section D Achievements and erformance p and innovative concepts on a wide variety of topics using different presentation styles including music and poetry and much discussion. The day provided a great platform to generate ideas for future sharing of ideas and theories. Alongside each of these events and key pieces of work, BACME membership has been steadily growing. The Board look forward to increased engagement and participation of our members, BACME is our organisation, and we are all here to support and learn from each other to improve the care of people living with ME/CFS in the UK. Another success lies in our being in a robust financial situation. This has enabled us to continue to deliver key objectives and to appoint a part time administrator to the Board, a post that is assisting us in organising regular Board meetings, delivering webinars and other training events and in carrying out key pieces of work. I would like to take this opportunity to welcome our new administrator who comes with a portfolio of skills BACME will benefit from, we are delighted to have you and your expertise in BACME, thank you for joining us. Many thanks are due to each Board member for the ways you have supported BACME through your Trustee positions and involvement in workstreams, this is highly valued and appreciated. Huge thanks too to each of the Executive Board members, Ceri Rutter for wisely and diligently leading our PPI work and team, Deb Roberts our Research Lead, and her team for delivery of an extremely high quality and informative BACME Bulletin three times a year, Deb is also outgoing Secretary, many thanks to Kirsty Northcott for leading a varied and rich Education and Training programme, a most valuable part of BACME’s contribution to members. I would now like to thank two Board members without whose passion and drive, BACME would not be where we are. Christine Oliver is an expert, determined, most dedicated Deputy Chair with a keen sense of vision and drive to see projects to completion. Christine’s application for lottery fund money resulted in our new website. Lastly, huge thanks to Dr Vikki McKeever, outgoing Executive Communications and Information Lead and our medical advisor. Vikki sends out key communications on a regular basis, led and is involved in key projects such as the development and launch of our new website, National Services survey and DHSC work, Vikki additionally produced many high-quality documents, most recently the Primary Care Guideline. Vikki has also taught on our webinar programme and assisted in every way possible in the delivery of key information for BACME. We are very glad you will be continuing to work on projects with us, Vikki but you will be very much missed on Board. Lastly, it is with great pleasure that I welcome all new Board members joining from this evening. We are delighted to have such interest in BACME Trustee positions and look forward to working together over the next year.
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Section E Financial review
Brief statement of the charity’s policy on reserves
BACME holds £8000 in reserve for all eventualities and aims for the bank balance remain above £14000 which is the reserve plus forecast annual expenditure.
Details of any funds materially in deficit
Nil
Further financial review details (Optional information)
You may choose to include additional information, where relevant about:
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the charity’s principal sources of funds (including any fundraising);
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how expenditure has supported the key objectives of the charity;
BACME's principal source of funding is through membership fees which are £30 pp pa. BACME currently has c200 professional members which generates an annual income in the region of £6000 (minus payment platform fees- PayPal & Stripe) BACME conference Nov 2022 generated a profit of c£7000 BACME hold no materiel assets.
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BACME funds are used to pay for running costs of website, video conference platforms and self-employed BACME virtual administrator. BACME does not have funds to invest in anything other than delivery of its objectives.
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investment policy and objectives including any ethical investment policy adopted.
Section F Other optional information
Section G Declaration
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees
Signature(s) Mrs Christine Mary Oliver Full name(s) Mrs Karen Anna Gregorowski Position (eg Secretary, Chair, Chair Deputy Chair etc) Date 03/10/2023
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| Charity Name British Association of Clinicians in ME/CFS |
Charity Name British Association of Clinicians in ME/CFS |
Charity Name British Association of Clinicians in ME/CFS |
Charity Name British Association of Clinicians in ME/CFS |
Charity Name British Association of Clinicians in ME/CFS |
No (if any) 1193035 |
No (if any) 1193035 |
No (if any) 1193035 |
CC16a | |
|---|---|---|---|---|---|---|---|---|---|
| For the period from |
Period start date 1/4/2022 |
To | Period end date 31/3/2023 |
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| Section A Receipts and payments | |||||||||
| Unrestricted funds to the nearest £ A1 Receipts |
Restricted funds to the nearest £ |
Endowment funds to the nearest £ |
Total funds to the nearest £ |
Last year to the nearest £ |
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| Balance Brought Forward | - 30,522- |
- -- |
- -- |
- 30,522- |
- -- |
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| Member Subscriptions & Conference Tickets | - 12,227- |
- -- |
- -- |
- 12,227- |
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| Sub total(Gross income for AR)- 42,749- A2 Asset and investment sales, (see table). |
- 42,749- |
- -- |
- -- |
- 42,749- |
- -- |
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| A2 Asset and investment sales, (see table). |
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| - -- |
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| Sub total- -- Total receipts - 42,749- A3 Payments |
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| - 42,749- |
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- 42,749- |
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| New Website Costs | - 9,337- |
- -- |
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- 9,337- |
- -- |
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| Membership Refund | - 25- |
- -- |
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- 25- |
- -- |
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| Meetings Expenses | - 2,114- |
- -- |
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- 2,114- |
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| Virtual PA | - 3,045- |
- -- |
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- 3,045- |
- -- |
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| Misc | - 100- |
- -- |
- -- |
- 100- |
- -- |
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| Software Purchases/Subscriptions | - 1,774- |
- -- |
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- 1,774- |
- -- |
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| ICO Fee | - 40- |
- -- |
- -- |
- 40- |
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| - -- |
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| - -- |
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| Sub total - 16,435- A4 Asset and investment purchases, (see table) |
- 16,435- |
- -- |
- -- |
- 16,435- |
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| A4 Asset and investment purchases, (see table) |
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| - -- |
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| - -- |
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| Sub total - -- Total payments - 16,435- Net of receipts/(payments) - 26,314- A5 Transfers between funds - -- A6 Cash funds last year end - -- Cash funds this year end - 26,314- |
- -- |
- -- |
- -- |
- -- |
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| - 16,435- |
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- 16,435- |
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| - 26,314- |
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- 26,314- |
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| - -- |
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| - -- |
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| - 26,314- |
- -- |
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- 26,314- |
- -- |
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CCXX R1 accounts (SS)
03/10/2023
1
Section B Statement of assets and liabilities at the end of the period
| Categories B1 Cash funds |
Details | Details | Unrestricted funds to nearest £ |
Unrestricted funds to nearest £ |
Restricted funds to nearest £ |
Restricted funds to nearest £ |
Endowment funds to nearest £ |
|---|---|---|---|---|---|---|---|
| Total cash funds | - 26,314- |
- -- |
- -- |
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| - -- |
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| - -- |
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| B2 Other monetary assets B3 Investment assets B4 Assets retained for the charity’s own use B5 Liabilities Signed by one or two trustees on behalf of all the trustees |
Total cash funds (agree balances with receipts and payments account (s)) Details Details Details Details Signature |
- 26,314- |
- -- |
- -- |
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| OK | |||||||
| Unrestricted funds Restricted funds to nearest £ to nearest £ - -- - -- - -- - -- - -- - -- - -- - -- - -- - -- - -- - -- Fund to which asset belongs Cost (optional) - -- - -- - -- - -- - -- Fund to which asset belongs Cost (optional) - -- - -- - -- - -- - -- - -- - -- - -- - -- Fund to which liability relates Amount due (optional) - -- - -- - -- - -- - -- Print Name ANNA GREGOROWSKI CHRISTINE MARY OLIVER |
Endowment funds to nearest £ |
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| Current value (optional) |
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| - -- |
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| - -- |
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| - -- |
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| - -- |
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| - -- |
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| Current value (optional) |
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| - -- |
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| When due (optional) |
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| Date of approval | |||||||
| ANNA GREGOROWSKI | 25/9/2023 | ||||||
| CHRISTINE MARY OLIVER | 25/9/2023 | ||||||
CCXX R2 accounts (SS)
03/10/2023
2