2022-03-31-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

	Period start date	Period start date			Period end date	Period end date
	08	Jan	2021		31	March	2022
From				To

Section A Reference and administration details

Charity name BACME British Association of Clinicians in ME/CFS (BACME)

Other names charity is known by BACME British Association for CFS/ME (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

Trustee name	Office (if any)	Name of person (or body) entitled to appoint trustee (ifany)
Mrs Karen Anna Gregorowski	Chair	BACME AGM
Mrs Christine Mary Oliver	Deputy Chair & Treasurer	BACME AGM
Ms Deborah Karen Roberts	Board Secretary & Research executive	BACME AGM
Dr Victoria Louise McKeever	Information and communication executive	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
Mrs Deborah Gardner	Non-executive Trustee	Appointed by formal election at AGM on 28thJan 2021

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Section B Structure, governance and management

Description of the charity’s trusts

Type of governing document

(eg. trust deed, constitution)

BACME Constitution

BACME CIO Constitution Jan 2022

How the charity is constituted

(eg. trust, association, company)

BACME is an association

Trustee selection methods

(eg. appointed by, elected by)

Trustees are appointed by an election process conducted at 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 representatives, Trustees must have direct personal experience of the condition, either as a patient or carer and be affiliated with a chronic fatigue syndrome (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 governance issues (Optional information)

You may choose to include additional information, where relevant, about:

policies and procedures adopted for the induction and training of trustees;
the charity’s organisational structure and any wider network with which the charity works;
relationship with any related parties;
trustees’ consideration of major risks and the system and procedures to manage them.

The Trustee training presentation link below has been used to prepare Trustees for CIO status which was awarded by the Charity commission on the 8[th] January 2021 https://e1.pcloud.link/publink/show?code=XZA1WmZhA5wqjnOLs0xi O0orU8tDkG6W1dV Further in-depth trustee training has been delivered at a Board away day September 2021 and further training and development is planned for the forthcoming year BACME conflict of interest policy https://e1.pcloud.link/publink/show?code=XZm1WmZ3SN3D1olKv4E 7K6v0ShwQS1wVrrk

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BACME organisational structure
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Section C Objectives and activities

The following is an extract from BACME constitution section 3:

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 charity set out in its governing document

3.3 Providing education and training for members respecting 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 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)

BACME carries out its purposes for the public benefit and the relief of sickness through board meetings, educational webinars, maintaining an up-to-date website, an annual conference, regular newsletters and collaboration with relevant organisations and patient groups.

BACME membership is open to clinical professionals who are actively involved in providing or supporting an ME/CFS service which provides health care to members of the public who have ME/CFS. BACME training events are primarily tailored for its membership. Conference is open to non-members who are professionals working in the field of ME/CFS. BACME provides a clear public benefit ; the relief of sickness by supporting BACME members to deliver up to date, clinically

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effective treatment in the field 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 benefit.

Section D Achievements and performance

Summary of the main achievements of the charity during the year

The attached presentations have been delivered at the AGM on the 28[th] Jan 2021 and 2[nd] Feb 2022 and include a summaries of the main achievements of BACME during the year = https://e1.pcloud.link/publink/show?code XZhDWmZ1HERVpmxMwpGj m0IDnfqnSIolED7 = https://e1.pcloud.link/publink/show?code XZQDWmZSvDr5ihH8W8GOp Mu6xfgAykdakUV

Summary of BACME key achievements and performance relating to BACME objectives in the relief of sickness for the public benefit.

1. Championing clinically effective practice - Post viral fatigue management guide - BACME position paper- Dysregulation model - Virtual conference May 2021 - Collated response to draft NICE ME/CFS guideline - Webinar “A conversation about Long Covid” - Successful Lottery Community fund grant 10k for new BACME website Jan 22

2. Dissemination of recent evidence & practice - Peer Supervision & topic-based webinars - Dissemination of BACME position paper - Newsletters & Communications with BACME members - Dissemination of NICE response to members - Virtual conference May 2021

3. Provision of education & training - Peer review & topic-based webinars - Newsletters & communications - Virtual conference May 2021

4. Advocating for equity & excellence - All BACME activities

Becoming a Charitable Incorporated Organisation
5. Facilitating networking
Webinars
BACME Executive members attending CMRC conference
- Virtual conference May 2021

6. BACME Chair is a CMRC Associate Board member

7. Advocate, promote and disseminate research

Newsletters & Communications

Chairs report

It is with great pleasure and pride that I am writing this report as BACME Chair to share what we have collectively achieved and the ways we met

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Section D Achievements and erformance p

our overall objective of the relief of sickness during 2021. The BACME Board works as a remarkable team, each Executive member and Trustee bringing unique skills and strengths to the table while recognising and respecting each other’s talents and showing kindness to each other. It is not surprising to me that the work of BACME continued and transformed during this time of global uncertainty and BACME met all key objectives. Our first aim of relieving sickness by championing clinically effective practice in treating ME/CFS and other primary fatigue conditions including long covid has been met as follows: in response to the pandemic, BACME, in collaboration with the York fatigue service, published a post viral fatigue guideline intended for use by all affected by post viral fatigue and professionals working in this field, many thanks to Dr Vikki McKeever, Executive Communication and Information Lead, for facilitating this work; the BACME Board held a number of extraordinary meetings to agree a position paper on key evidence based treatments for ME/CFS, thank you for to all Executive Team members and trustees involved in this process; BACME delivered webinars on significant and relevant topics including Virtual working with individual patients and groups during the Covid period and on Dysregulation theory and translating this into practice, many thanks to Kirsty Northcott, Executive Training and Education Lead for ensuring a continued programme of relevant and timely Education and peer supervision webinars; in December 2020 BACME submitted an extensive, collaborative response regarding the draft NICE ME/CFS guideline, many thanks to the NICE response team, thank you again to Vikki, Deb Roberts BACME Executive Board Secretary and Research lead, Ceri Rutter Patient and Public Involvement Lead working with Rhonda Knight and Les Parry, to Trustee Dr Pete Gladwell, and all who gave their time to assist with the completion of this response. We received many thanks from members for doing this. Dissemination of recent evidence and practice occurred through regular peer supervision, topic-based education webinars, the dissemination of a position paper, our first and very successful virtual conference May 2021 and regular newsletters and key messages sent to members during the year. Vikki works extremely hard and seemingly tirelessly to ensure timely and pertinent communication with members while Deb working with Rhonda and Emily Tims ensure newsletters are high quality, evidence based and sent out at regular intervals. Collating and disseminating the position paper, a BACME Board team effort, ensured being up to date with most recent relevant research as did the collation of a high-quality NICE response representative of members and services. Thank you to many BACME members for providing material for this response. We continued to advocate for equity of access and excellence in the provision of ME/CFS services in 2021. Becoming a Charitable Incorporated Organisation on January the 8[th] 2021 will ensure we can work with services at a more strategic level in more and effective ways. While this is a team achievement, it would not have happened without the determination and attention to detail provided by BACME Executive Deputy Chair and Finance Lead, Christine Oliver. Thank you very much for continuing to keep focussed on this goal when other Executive members were working on the position paper, NICE response, and webinars. Christine has an extraordinary capacity for multitasking and seemingly boundless energy, a very good combination for excellent outcomes. We were delighted to be awarded a lottery community fund grant of £10,000 in January 2022 which has been put to excellent use in the procurement and design of a new BACME website. This website will

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Section D Achievements and erformance p facilitate all BACME’s key objectives through a modern and intuitive new platform. Regular peer supervision webinars provided the vehicle for on-going facilitation of networking amongst clinicians. In October 2021 the BACME board held their first board development day Face to Face in Birmingham. At this event, the decision to change BACME organisational name from “The British Association of CFS/ME” (BACME) to “The British Association of Clinicians in ME/CFS” (BACME) was agreed to better reflect our charitable purpose, membership and in line with the recently published NICE Guidance (NG206). As BACME Chair, I continue to be part of the MERC, allowing for collaboration between organisations. Executive Research Lead, Deb Roberts ensured that we continue to advocate for and publish all useful results arising from research supported by BACME, through publication in BACME bulletin. Throughout this past year we have been lucky to have three patient / carer representatives involved in each outcome achieved by BACME Board, many thanks to Ceri Rutter, Rhonda Knight and Les Parry for the experience, insight, and wisdom you bring to BACME Board, this is most valuable. Many thanks too to the quieter members of BACME Board who have worked in the background picking up essential tasks whenever required, Charlie Adler, Bev Knopps, Katie Street, Peter Gladwell, Debbie Gardner, Les Parry, Marta Prytys and Jayne Woodcock. A big thank you too to Harpinder Aujla, information support officer working with Vikki. Pinda has been instrumental in looking after membership information and the BACME website, working with Vikki and Christine. Overall, this has been an excellent year for BACME with an increase in membership, participation, and engagement. BACME has been approached by a number of organisations to explore increased collaboration. We look forward to another productive year in 2022/3. Next steps include the launch of our new website in September 2022 and virtual conference in November 2022, updating and producing new guidance to further support members, ensuring an on-going programme of webinars and similar educational events, forming young people’s and severely affected advisory groups and another year of what we hope will be increased membership, paying particular attention to less represented professional groupings while keeping patients, carers, and representatives at the heart of all we do. BACME Chair Anna Gregorowski

Section E Financial review

The charity aims to maintain reserves for the following. Brief statement of the - Contingency fund reserve £8000 charity’s policy on reserves Details of any funds materially The BACME account is not in deficit and continues to generate a small in deficit but healthy profit. Further financial review details (Optional information)

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BACME hold no material assets in terms of buildings, IT hardware or any
You may choose to include type of equipment.
additional information, where BACME does not pay any person on the board of trustees. All positions
relevant about: held are delivered on a voluntary basis or as a very small proportion of
• the charity’s principal their professional roles. sources of funds (including Our 2020 conference had to be cancelled due to COVID -19 and the any fundraising); £9195 conference fees received have either been refunded or held over
• how expenditure has for attendance at BACME’s virtual conference in May 2021. supported the key objectives BACME’s main income is from membership fees and main expense is of the charity; maintenance and development of BACME’s website currently provided
• investment policy and by Circle. However, the recent lottery community fund award of £10,000 will be used to procure and design a new BACME website.
objectives including any BACME’s May 2021 virtual conference generated a profit of £6000 for
ethical investment policy reinvestment in BACME activities for the relief of sickness for public
adopted. benefit.

BACME have not increased membership fees for several years and an increase of £5 on our membership fees would increase income by around £1000 per year. This is planned for September 2022 when the new BACME website is expected to go live.

Increasing BACME membership by 20% would increase income at current rates by around £800 per year. It is hoped that this will be achieved by raising the profile of BACME and communicating all the benefits that BACME has to offer. The more professionals in the field of ME/CFS BACME can reach, the better able we will be to deliver BACME purpose of “the relief of sickness” for patients with ME/CFS. BACME is led and delivered by professionals in the field of ME/CFS on a voluntary basis with some executive trustees having a few hours a week of their professional roles dedicated to this. Considering any income generation initiatives for the benefit of BACME members and the delivery of its purpose, needs to be considered carefully in the light of this. Thought will need to be given with regards to paying for services such as webinar speakers and administrative support. Members’ views would be very welcome on this dialogue as we move forward as an organisation.

Section F Other optional information

Left Blank

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Section G Declaration

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

Signed on behalf of the charity’s trustees

ed on behalf of the charity’s trustees	’s trustees
Signature(s) Full name(s)ANNA GREGOROWSKI CHRISTINE MARY OLIVER Position (eg Secretary, Chair, etc) BACME CHAIR BACME DEPUTY CHAIR & TREASURER Date 19/01/2023
		CHRISTINE MARY OLIVER
	BACME CHAIR		BACME DEPUTY CHAIR & TREASURER
	19/01/2023

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Charity Name No (if any)
British Association of Clinicians in ME/CFS 1193035
Receipts and payments accounts CC16a
For the period Period start date Period end date
To
from 08/01/2021 31/03/2022
Section A Receipts and payments
Unrestricted Restricted Endowment
Total funds Last year
funds funds funds
to the nearest
to the nearest £ to the nearest £ to the nearest £ to the nearest £
£
A1 Receipts
Balance Brought Forward 15,788 - - 15,788 -
Member Subscriptions 6,509 - - 6,509 -
Cheque Donation 103 - - 103 -
Lottery Grant 10,000 - - 10,000 -
Expenses Repaid 111 - - 111 -
Tickets sold for Conference 6,625 - - 6,625 -
- - - -
- - - - -
Sub total (Gross income for
39,136 - - 39,136 -
AR)
A2 Asset and investment sales,
(see table).
- - - -
- - - - -
Sub total - - - - -
Total receipts 39,136 - - 39,136 -
A3 Payments
Website Costs 4,653 - - 4,653 -
Membership Refund 25 - - 25 -
Meetings Expenses 3,632 - - 3,632 -
Conference Refunds 120 - - 120 -
Misc 184 - - 184 -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total 8,614 - - 8,614 -
A4 Asset and investment
purchases, (see table)
- - - -
- - - -
Sub total - - - - -
Total payments 8,614 - - 8,614 -
Net of receipts/(payments) 30,522 - - 30,522 -
A5 Transfers between funds - - - - -
A6 Cash funds last year end - - - - -
Cash funds this year end 30,522 - - 30,522 -
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Section B Statement of assets and liabilities at the end of the period

Categories	Details	Unrestricted funds	Restricted funds	Endowment funds
		to nearest £	to nearest £	to nearest £
B1 Cash funds	Total cash funds	30,522	-	-
		-	-	-
		-	-	-
	*Total cash funds*	30,522	-	-
	(agree balances with receipts and payments account(s))	OK	OK	OK
		Unrestricted funds	Restricted funds	Endowment funds
	Details	to nearest £	to nearest £	to nearest £
B2 Other monetary assets		-	-	-
		-	-	-
		-	-	-
		-	-	-
		-	-	-
		-	-	-

	Details	Fund to which asset belongs	Cost (optional)	Current value (optional)
B3 Investment assets			-	-
			-	-
			-	-
			-	-
			-	-

	Details	Fund to which asset belongs	Cost (optional)	Current value (optional)
B4 Assets retained for the charity’s own use			-	-
			-	-
			-	-
			-	-
			-	-
			-	-
			-	-
			-	-
			-	-

	Details	Fund to which liability relates	Amount due (optional)	When due (optional)
B5 Liabilities			-
			-
			-
			-
			-

Signed by one or two trustees on behalf of all the trustees	Signature	Print Name		Date of approval
		ANNA GREGOROWSKI		19/01/2023
		CHRISTINE MARY OLIVER		19/01/2023

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