## **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