2024-03-31-accounts - British Association of Clinicians in ME/CFS (BACME)

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

Trustees’ Annual Report for the period

From 1 April 2023 To 31 March 2024

Charity name: BACME (British Association of Clinicians in ME/CFS) Charity registration number: 1193035

Objectives and Activities

	SORP reference
Summary of the purposes of the charity as set out in its governing document	Para 1.17	The relief of sickness for public beneft by: 3.1 Championing clinically efective practice in treating ME/CFS and other primary fatigue conditions 3.2 Disseminating recent evidence and practice to clinical practitioners 3.3 Providing education and training for members using up-to-date evidence and best shared practice 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
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	BACME carried out its purposes for the public beneft and the relief of sickness through Board meetings, peer supervision and educational webinars, maintaining an up to date website, an annual conference, regular newsletters and collaboration with relevantorganisations and

		patient groups. BACME membership is open to clinical professionals actively involved in providing or supporting ME/CFS services which provide health care to members of the public living with ME/CFS. BACME training events are primarily tailored for members. Conference is open to non-members who are professionals working in the feld of ME/CFS. BACME provides a clear public beneft, the relief of sickness by supporting BACME members to deliver up to date, clinically efective treatment in the feld of ME/CFS which reduces sickness by improving outcomes, quality of life and experiences for this patient group. All trustees have signed the statutory declaration regarding guidance issued by the charity commission on public beneft.
Statement confirming whether the trustees have had regard to the guidance issued by the Charity Commission on public benefit	Para 1.18	Each trustee attended training on the role of the trustee. This training is aligned with guidance issued by the Charity Commission on public benefit.

Additional information (optional) You may choose to include further statements where relevant about:

SORP reference Para 1.38 Policy on grant making Para 1.38 Policy on social investment including program related investment All BACME trustees are volunteers. Para 1.38 Contribution made by volunteers 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	Summary of BACME key achievements and performance relating to BACME objectives in the relief of sickness for the public beneft. 1. Championing clinically efective practice - BACME delivered regular training events to members including peer supervision webinars (4 to 6 per year) and training webinars on topics (4 to 6 per year). - BACME Board members took part in three Department of Health and Social Care (DHSC) ME/CFS working groups (research; attitudes and education; and living with ME/CFS) in this way contributing to the DHSC delivery plan for ME/CFS. - BACME Board members, with other organisations, worked with NHS England and other organisations to provide feedback on 3 e-learning modules on ME/CFS. 2. Dissemination of recent evidence & practice - Peer Supervision & topic based webinars - Newsletters & Communications with BACME members 3. Provision of education & training

		- Peer review & topic based webinars - Newsletters & communications 4. Advocating for equity & excellence - All BACME activities - Operating at a Charitable Incorporated Organisation - National Services Survey 5. Facilitating networking - Webinars 6. Advocate, promote and disseminate research - Newsletters & Communications TheAnnual General Report delivered in February 2024 shares BACME Board and Executive Team’s key achievements for 2023. At the AGM in February 2024 Chair Anna Gregorowski thanked those on Board for their continued dedication, hard work, and passion and other members for their contribution to the successful and challenging journey this past year. Some achievements were highlighted:  Participationin national projects, most notably the Department of Health and Social Care working groups which each include BACME representation, contributing to the bigger picture for those living with ME/CFS across the UK.  The second BACME National Services Survey, led by Dr Vikki McKeever.  Developing BACME’s plan on a page strategy for 2023-2025, with the aim of ensuring BACME remains sustainable, viable and relevant. National Services Survey, led by Dr Vikki McKeever:  provided an updated snapshot into the provision of specialist ME/CFS care across the UK.  identified examples of good practice and highlighted areas where improvements are needed.  data will be used to: `o` contribute to political efforts focusing on improving the delivery of care to people living with ME/CFS; `o` advocate for resources; and `o` identify opportunities for further development of services and the provision of education and training.  Key recommendations include ensuring: `o` patient and carer experiences are used to inform development and service

	improvements;
	`o` a specialist ME/CFS pathway and service
	specification is developed and
	standardised;
	`o` the number and quality of specialist
	services, including in-patient facilities, are
	increased;
	`o` ME/CFS education and specialist training
	is improved;
	`o` clinicians are supported to conduct
	clinical research;
	`o` meaningful clinical outcome measures
	are developed in collaboration with
	people with lived experience;
	`o` services consistently deliver high quality
	care that is of benefit to patients;
	`o` care and support plans are in place; and
	`o` there is continued promotion of an
	awareness of ME/CFS, with BACME
	collaboratively working with ME/CFS
	patient charities to improve the provision
	of care to people living with ME/CFS
	across the UK.
Anna thanked Vikki for expertly leading this
work and to Board members who took part in
this project and members and services who
filled out the survey and assisted in additional
ways.
PPI Team, led by Ceri Rutter:
	continued to meet monthly in 2023
	contributed to the revised Severely Affected
	Guide
	reviewed key documents
	contributed to BACME communication
	through developing and refining responses
	to FAQs, and providing regular and high-
	quality pieces for BACME Bulletins
	continued to seek new patient
	representatives, as part of working towards
	smooth succession planning (hope to secure
	a young adult patient representative later
	this year)
	continued to contribute to key conference
	planning
	shared examples of work, interviewed
	current members about their work and are
	developing an Oral History Project, to
	capture current and past work undertaken
	by practitioners in the ME/CFS field through
	recorded interviews (this forms part of an
	initiative to strengthen BACME's
	transparency).
Anna thanked Rhonda Knight and Kirsty
Northcott for their enormous and valuable
contributions to the PPI Group over many
years. She welcomed a new PPI
representative, Sheila Miller, and indicated that
Deputy Chair Board, Christine supported this
workstream in 2023 and will continue to be part
of this workstream.

Education and Training, led by Charlie Adler

(previously Kirsty Northcott):
 met quarterly in 2023
 delivered six successful events in 2023:
three peer supervision webinars; one
conversation about care and support plans;
a children and young person focused
workshop; and a journal club.
Anna explained this workstream saw a change
in leadership in 2023, from Kirsty Northcott to
Charlie Adler. She thanked Kirsty for her hard
work in leading and transforming this
workstream over many years and leaving a
legacy of successful events and training models
for use in the future.
She thanked Charlie Adler for stepping
seamlessly into the Education and Training
Lead role, taking this on proactively and
bringing her positive perspective to the role.

Additional information (optional) You may choose to include further statements where relevant about:

Achievements against objectives set	Para 1.41
Performance of fundraising activities against objectives set	Para 1.41
Investment performance against objectives	Para 1.41
Other

Financial Review

Financial Review
Review of the charity’s financial position at the end of the period	Para 1.21	The charity is dependent on membership income, and this has remained resilient. This year has seen a small reduction in balance, which is expected as there was no conference held, which is the other main source of income.
Statement explaining the policy for holding reserves stating why they are held	Para 1.22	BACME holds £8000 in reserve for all eventualities and aims for the bank Balance to remain above £14000 which is the reserve plus forecast annual expenditure.
Amount of reserves held	Para 1.22	As above
Reasons for holding zero reserves	Para 1.22	Not applicable
Details of fund materially in deficit	Para 1.24	None
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	BACME's principal source of funding is through membership fees . BACME currently has c200 professional members which generates an annual income in the region of £6000 BACME hold no materiel assets. BACME funds are used to pay for running costs of website, video conference platforms and self-employed BACME virtual administrators.
Investment policy and objectives including any social investment policy adopted	Para 1.46	BACME does not have funds to invest in anything other than delivery of its objectives.
A description of the principal risks facing the charity	Para 1.46	Loss of membership. Currently the Trustees do not consider this a significant risk.
Other

Structure, Governance and Management

Description of charity’s trusts:
Type of governing document (trust deed, royal charter)	Para 1.25	BACME constitution
How is the charity constituted? (e.g unincorporated association, CIO)	Para 1.25	BACME is a CIO- Association
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	Trustees are appointed by an election process conducted at an AGM and in accordance with the BACME constitution. The following conditions are cited at section 12.2 of the BACME constitution;  Charity trustees must be a member of a professional body relevant to their professional role and deliver or support clinical care to people with ME/CFS. In the case of patient and carer representatives, trustees must have direct personal experience of the condition, either as a patient or carer and be afliated with an ME/CFS service delivering care in line with BACME objects.  Charity trustees agree to uphold and support the BACME constitution.  Charity Trustees must hold current BACME membership and have been a BACME member for a minimum of 6 months prior to becoming a trustee

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	Each new trustee attends BACME trustee training
The charity’s organisational structure and any wider network with which the	Para 1.51	The Board has a Chair; Deputy Chair; PPI Lead; Education and Training Lead; Editorial Lead; and Treasurer. During this time period there were 4 PPI trustees including the PPI Lead and

charity works
Relationship with any related parties	Para 1.51	BACME meets with 2 patient charities - Action for M.E. and the ME Association on a quarterly basis; BACME attended monthly Forward ME (coalition of ME/CFS charities) meetings in this time period.
Other

Reference and Administrative details

Charity name	BACME
Other name the charity uses
Registered charity number	1193035
Charity’s principal address	Paediatric and Adolescent Division 6thfloor central 250 Euston Road London NW12PG

Names of the charity trustees who manage the charity

Trustee name	Office (if any)	Dates acted if not for whole year	Name of person (or body) entitled to appoint trustee (ifany)
Karen Anna Gregorowski	Chair		BACME AGM
Christine Mary Oliver	Deputy Chair		BACME AGM
David Vickers	Treasurer		BACME AGM
Ceridwen Rutter	Patient & Public Involvement executive		BACME AGM
Charlotte Joanna Adler	Training & Education executive		BACME AGM
Fiona McKechnie	Editorial Lead		BACME AGM
Les Parry	Non-executive Trustee (PPI)		BACME AGM
Marta Prytys	Non-executive Trustee		BACME AGM
Peter Gladwell	Non-executive Trustee		BACME AGM
Marina Townend	Non-executive Trustee		BACME AGM
Selwyn Richards	Non-executive Trustee		BACME AGM
Louise Humphrey	Non-executive Trustee		BACME AGM
Sheila Miller	Non-executive Trustee (PPI)		BACME AGM
Charley Wrey	Non-executive Trustee (PPI)		BACME AGM
Melissa Sargaison	Non-executive trustee	Elected at AGM January2024	BACME AGM

– Corporate trustees names of the directors at the date the report was approved

Director name

Name of trustees holding title to property belonging to the charity

Trustee name Dates acted if not for whole year

Funds held as custodian trustees on behalf of others

Description of the assets None held in this capacity Name and objects of the Not applicable charity on whose behalf the assets are held and how this falls within the custodian charity’s objects Details of arrangements for Not applicable safe custody and segregation of such assets from the charity’s own assets

Additional information (optional)

Names and addresses of advisers (Optional information)

Type of Name Address adviser

Name of chief executive or names of senior staff members (Optional information)

Exemptions from disclosure

Reason for non-disclosure of key personnel details

Other optional information

Declarations

The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Signature(s) Karen Anna Gregorowski Full name(s) Karen Anna Gregorowski

Position (eg Secretary, Chair Chair, etc)

Date

28/01/2025

	Charity Name	Charity Name	Charity Name	No (if any)	CC16a
	For the period from	4/1/2023 4/1/2023	To	Period end date 3/31/2024

Section A Receipts and payments
A1 Receipts Balance forward 26,314 - Membershipfees 5,570 - - - - - 31,884 - - Sub total - Total receipts 31,884 A3 Payments Administration 6,065 Licence and fees 447 Miscellaneous 30 Meetingcosts 1,537 - - - - - Sub total 8,079 - - Sub total - Total payments 8,079 Net of receipts/(payments) 23,805 A5 Transfers between funds - A6 Cash funds last year end - Cash funds this year end 23,805 Unrestricted funds to the nearest £ *Sub total*(Gross income for AR) A2 Asset and investment sales, (see table). A4 Asset and investment purchases, (see table)		to the nearest £ - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Restricted funds	to the nearest £ Endowment funds	Total funds to the nearest £ 26,314 - 5,570 - - - - - 31,884 - - - 31,884 6,065 447 30 1,537 - - - - - 8,079 - - - 8,079 23,805 - - 23,805	Last year to the nearest £
			-	26,314	-
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			-	5,570	-
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			-	31,884	-

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			-	31,884	-

			-	6,065	-
			-	447	-
			-	30	-
			-	1,537	-
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			-	-	-
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			-	-	-
			-	-	-
			-	8,079	-

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			-	-
			-	-	-

			-	8,079	-

		-	-	23,805	-
		-	-	-	-
		-	-	-	-
		-	-	23,805	-

Section B Statement of assets and liabilities at the end of the period	Section B Statement of assets and liabilities at the end of the period	Section B Statement of assets and liabilities at the end of the period
Categories B1 Cash funds B2 Other monetary assets B3 Investment assets B5 Liabilities B4 Assets retained for the charity’s own use Signed by one or two trustees on behalf of all the trustees	Details Details Details Details Details Signature David Vickers *Total cash funds* (agree balances with receipts and payments account(s))	to nearest £ to nearest £ - - - - - - 23,810 Agreement Error OK to nearest £ to nearest £ - - - - - - - - - - - - Cost (optional) - - - - - Cost (optional) - - - - - - - - - - - - - - Print Name David Vickers Unrestricted funds Restricted funds Unrestricted funds Restricted funds Fund to which asset belongs Fund to which asset belongs Fund to which liability relates Amount due (optional)	to nearest £ Endowment funds
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			OK
			to nearest £ Endowment funds
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			Current value (optional)
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			Date of approval
	David Vickers	David Vickers	1/26/2025