2025-01-01-accounts

Trustees’ Annual Report for the period

From 19/03/2024 Period start date To 01/01/2025 Period end date

Charity name: NTM NETWORK UK

Charity registration number: 1207531

Objectives and Activities

	SORP reference
Summary of the purposes of the charity as set out in its governing document	Para 1.17	NTM Network UK was established in December 2014 in response to the need for improved management of the rising number of NTM isolates identfed in clinical practce. It provides a framework within which NTM infectons and disease can be systematcally investgated, researched and managed. NTM Network UK aims to:  Consolidate the mult-disciplinary expertse available to develop standardised, cost-efectve methods and tools to identfy NTM, and to improve NTM infecton and disease diagnosis and management.  Standardise clinical practce and data collecton, including clinical assessments, microbiology, immunology, radiology, health status/quality of life scores and outcomes.  Develop protocols for data collecton, clinical sampling, and sample storage (to include sputum, blood, laboratory and imaging data).  Obtain mult-centre ethical approval to enable data collecton and long-term projects to take place.  Develop a harmonised database of NTM patents for clinical use and research analysis.  Evaluate the process and outputs of the research actvites.  Support new areas of research, actvites and events proposed by members.  Assess and support the development of collaboratons and interactons within NTM

		Network UK, and with other research organisatons and clinical groupings.  Work to make public health surveillance of NTM more robust.  Assist with resolving strategic level local and regional issues and risks.  Support the UK patent associaton, NTM Patent Care UK, in achieving its charitable aims.  Support and provide educatonal actvites in the feld of NTM.
Summary of the main actvites in relaton to those purposes for the public beneft, in partcular, the actvites, projects or services identfed in the accounts.	Para 1.17 and 1.19	Main actvites for this reportng period include the following: a) NTM Network UK has held regular Quarterly Members Meetngs (Summer and Autumn Meetngs 2024) to update members on Network actvites, share reports from specialist interest groups, and hear presentatons from invited guest speakers. These meetngs promote collaboraton, educaton, and knowledge sharing among healthcare professionals involved in the care of people with NTM disease. b) NTM Network UK a Management Group Meetng to review progress, oversee ongoing projects, and plan future actvites in line with the charity’s strategic objectves. These meetngs are held on a 6-monthly basis. c) NTM Network UK has fnalised and published the NTM Standards of Care, providing a writen guide to the minimum level of care that patents with NTM disease should expect to receive within the NHS. A meetng was held both online and at the University College London Insttute of Child Health on Tuesday, 9thJuly 2024, to introduce the document and support its adopton across the UK. d) NTM Network UK has developed educatonal materials including a slide deck and A4 handout to explain the purpose and relevance of the Standards of Care. These materials were disseminated to relevant professional societes and healthcare teams to promote understanding and implementaton. e) NTM Network UK supported NTM research by developing two scientfc abstracts: one reportng on real-world use of bedaquiline in NTM treatment (forpresentaton at the BTS Winter Meetng2024),

		and another analysing the cost and value of the work undertaken to produce the Standards of Care. f) The Pharmacy Interest Group, on behalf of NTM Network UK, produced a series of NTM Monographs, providing detailed guidance on the practcal use of NTM treatments to support clinicians and pharmacists involved in patent care. g) Across these actvites, NTM Network UK has aimed to improve outcomes for people with NTM disease in the UK, by strengthening collaboraton between healthcare professionals, promotng consistency and quality in clinical care, and supportng educaton and research.
Statement confrming whether the trustees have had regard to the guidance issued by the Charity Commission on public beneft	Para 1.18	The trustees have had regard to the Charity Commission’s guidance on public beneft.

Additional information (optional)

You may choose to include further statements where relevant about:

	SORP reference
Policy on grant making	Para 1.38	N/A
Policy on social investment including program related investment	Para 1.38	N/A
Contributon made by volunteers	Para 1.38	All actvites undertaken by NTM Network UK during the reportng period were delivered through the work of volunteers. The Network’s members, including clinicians, pharmacists, scientsts, and other healthcare professionals, contributed their tme and expertse for free in order to develop the materials produced by NTM Network UK. In partcular, the development of the NTM Standards of Care, the preparaton of scientfc abstracts, and the producton of the NTM Monographs were achieved through the voluntary eforts of members working collaboratvely across the UK. The charity’s ability to deliver these outputs relies entrely on the ongoing commitment and goodwill of its volunteer members.
Other		N/A

Achievements and Performance

Achievements and Performance
	SORP reference
Summary of the main achievements of the charity, identfying the diference the charity’s work has made to the circumstances of its benefciaries and any wider benefts to society as a whole.	Para 1.20	Main achievements for this reportng period include the following: a) Publicaton and launch of the NTM Standards of Care, providing the frst UK- wide framework outlining the minimum level of care that people with NTM disease should expect to receive within the NHS. b) Development and disseminaton of educatonal materials, including a slide deck and A4 handout, to support healthcare professionals in understanding and implementng the Standards of Care in their clinical practce. c) Organisaton of a Standards of Care Launch Meetng, held both online and at University College London Insttute of Child Health, to promote engagement and encourage adopton of the Standards among the professional community. d) Development of scientfc abstracts to share fndings with the wider healthcare community, including analysis of the use of bedaquiline in NTM treatment and a cost- value review of the Standards of Care development process. e) Producton of detailed NTM Monographs by the Pharmacy Interest Group, ofering practcal guidance for clinicians and pharmacists in the efectve use of NTM treatments.

Additional information (optional)

You may choose to include further statements where relevant about:

Achievements against objectves set	Para 1.41	N/A
Performance of fundraising actvites against objectves set	Para 1.41	N/A
Investmentperformance against objectves	Para 1.41	N/A

Other N/A

Financial Review

Review of the charity’s fnancial positon at the end of the period	Para 1.21	Para 1.21	The charity is in positve balance. The reportng period represents the frst few months of the network being a charity and so we had limited tme to raise funds and no need for expenditure. In our next annual report we will expect to show increased income from fundraising and modest expenditure for support with administraton and associated expenses, but maintenance of a healthy positve balance	The charity is in positve balance. The reportng period represents the frst few months of the network being a charity and so we had limited tme to raise funds and no need for expenditure. In our next annual report we will expect to show increased income from fundraising and modest expenditure for support with administraton and associated expenses, but maintenance of a healthy positve balance
Statement explaining the policy for holding reserves statng why they are held	Para 1.22		The Charity has no policy for holding reserves and a policy is not considered necessary as the charity has had very limited spending during this reportng period. The reportng period represents the frst few months of the charity and this will be considered in future reportng years if necessary.
Amount of reserves held	Para 1.22		NA
Reasons for holding zero reserves	Para 1.22		The charity has had very limited spending over the reportng period,so reserves are not considered necessary.
Details of fund materiallyin defcit	Para 1.24		N/A
Explanaton of any uncertaintes about the charity contnuing as a goingconcern	Para 1.23		N/A
Additonal informaton (optonal) You maychoose to include further statements where relevant about:
The charity’s principal sources of funds (including any fundraising)		Para 1.47		The charity had a positve balance of £754.08 at the end of this period. Income had been received via fundraising undertaken by members of the NTM Network undertaking sponsored events
Investment policy and objectves including any social investmentpolicyadopted		Para 1.46		N/A
A descripton of the principal risks facingthe charity		Para 1.46		N/A
Other				N/A

Structure, Governance and Management

Description of charity’s trusts: N/A

Type of governing document (trust deed, royal charter)	Para 1.25	Consttuton of the Charitable Incorporated Organisaton (CIO)
How is the charity consttuted? (e.g unincorporated associaton, CIO)	Para 1.25	Charitable Incorporated Organisaton (CIO)
Trustee selecton methods including details of any consttutonal provisions e.g. electon to post or name of any person or body enttled to appoint one or more trustees	Para 1.25	Trustees include founding individuals and healthcare professionals, to ensure the best representaton of professionals in NTM care.

Additional information (optional)

You may choose to include further statements where relevant about:

Policies and procedures adopted for the inducton and training of trustees	Para 1.51	N/A
The charity’s organisatonal structure and any wider network with which the charity works	Para 1.51	N/A
Relatonship with any related partes	Para 1.51	N/A
Other		N/A

Reference and Administrative details

Charityname	NTM Network UK
Other name the charity uses	N/A
Registered charity number	1207531
Charity’s principal address	Royal Free London NHS Foundaton Trust, Pond St, Hampstead, London NW3 2QG

Names of the charity trustees who manage the charity during period of report

Trustee Name	Ofce (if any)	Dates acted if not for whole year	Name of person (or body) enttled to appoint trustee (if any)
Marc Lipman	Trustee
Ronan Breen	Trustee
Ibrahim Abubakar	Trustee

Jennie Keane	Trustee
Lisa Morrison	Trustee

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

Director name N/A

Name of trustees holding title to property belonging to the charity

Trustee name	Dates acted if not for whole year
N/A

Funds held as custodian trustees on behalf of others	Funds held as custodian trustees on behalf of others
Descripton of the assets held in this capacity	N/A
Name and objects of the charity on whose behalf the assets are held and how this falls within the custodian charity’s objects	N/A
Details of arrangements for safe custody and segregaton of such assets from the charity’s own assets	N/A

Additional information (optional)

Names and addresses of advisers (Optional information)

	Names and addresses of advisers (Optonal informaton)
	Type of adviser Name Address
	N/A
	Name of chief executve or names of senior staf members (Optonal informaton)
	N/A

Exemptions from disclosure

Reason for non-disclosure of key personnel details

N/A

Other optional information N/A

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) Ronan Angus MacCormick Breen Position (eg Secretary, Chair, etc) Vice-Chair Date 01/11/2025