## **Trustees’ Annual Report for the period** ## **From 02/11/2021 Period start date To 01/11/2022 Period end date** ## **Charity name: NTM PATIENT CARE UK** ## **Charity registration number: 181372** ## **Objectives and Activities** ||SORP
referenc
e|| |---|---|---| |Summary of the
purposes of the charity
as set out in its
governing document|Para
1.17|The purpose of NTM Patient Care UK is to
provide information and support to NTM
patients. We also work with Healthcare
Professional (HCP) teams to improve
understanding of patient needs, co-
ordinating and facilitating the transfer of
information in both directions between the
two.
This purpose is set out in the Constitution
as the following objectives;
Working to improve the lives of people
with non-tuberculous mycobacterial (NTM)
infection in the UK, in particular but not
exclusively by;
a) the provision of education and
information to increase understanding of
NTM in both the clinical and patient
communities.
b) the development and implementation of
a support network for NTM patient
communities.| |Summary of the main
activities in relation to
those purposes for the
public beneft, in
particular,the|Para
1.17
and
1.19|_Main activities for this reporting period_
_include to the following;_
a) NTM Patient Care UK has worked with
national healthcare organisationsincluding| |activities, projects or
services identifed in
the accounts.||NHS England and NHS Improvement
(NHSEI), the Scottish Medicines
Consortium (SMC) and the All Wales
Medicines Strategy Group (AWMSG) to
provide patient advocacy and
representation for NTM patients in relation
to relevant treatment decisions.
b) NTM Patient Care UK has held regular
Zoom Meetings for NTM patients and HCPs
with an interest in NTM.
These meetings have included talks &
presentations on areas with specifc
relevance to NTM patients such as physio,
pharmacy, microbiology and dietetics, as
well as general Q & A sessions.
These meetings also provide both support
and a forum for NTM patients to share and
discuss their experiences of NTM and
associated issues.
c) Continued development and
improvement of a NTM Patient Care UK
website to allow the patient association to
provide information and support to NTM
patients.
d) NTM Patient Care UK has developed
both posters and leafets for dissemination
in respiratory clinics and other relevant
locations. This has signifcantly increased
engagement with NTM patients and HCPs
to develop support in the further
development of the patient association.
e) NTM Patient Care UK has continued to
raise awareness of this disease within the
medical community and actively engaged
with a number of NTM patients and their
wider support community.
f) Organisation of an NTM Patient Care UK
Management Group and instigation of
regular Meetings to develop strategies for
the patient association to help meet its
intended goals.| |---|---|---| |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
relatedinvestment|Para 1.38|N/
A| |Contribution made by volunteers|Para 1.38|N/
A| |Other||N/
A| ## **Achievements and Performance** ||SORP
referen
ce|| |---|---|---| |Summary of the main
achievements of the
charity, identifying 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 activities for this reporting period
have included the following;
a) Provision of improved support and
information specifc to NTM patients.
b) NTM Patient Care UK has worked with
national healthcare organisations
including NHS England and NHS
Improvement (NHSEI), the Scottish
Medicines Consortium (SMC) and the All
Wales Medicines Strategy Group
(AWMSG) to provide patient advocacy
and representation for NTM patients in
relation to relevant treatment decisions.
c) Development and implementation of
a website that provides NTM patients
with a source of information and advice
specifc to their situation. This includes
patient stories, frequently asked
questions, news stories, research info,
links to other information sources as
well as information on physio, mental
health and other useful info.
d) Provision of regular Zoom meetings to
provide relevant information and
support specifc to NTM patients. This
has improved support available to these
patients as well as providing an
excellent opportunity for informal
interactionbetween NTMpatients and| HCPs. This interaction has provided an improved understanding of NTM and the patient experience within both groups. e) NTM Patient Care UK has had a key role in the approval of Arikayce, a drug that is necessary when the usual combination antibiotics fail to resolve mycobacterial infections such as NTM. . ## **Additional information (optional)** You may choose to include further statements where relevant about: |Achievements against objectives set|Para
1.41|N/
A| |---|---|---| |Performance of fundraising activities against
objectives set|Para
1.41|N/
A| |Investment performance against objectives|Para
1.41|N/
A| |Other||N/
A| ## **Financial Review** |Review of the
charity’s fnancial
position at the end of
the period|Para
1.21|NTM Patient Care UK funds are in a reasonably
healthy state.| |---|---|---| |Statement explaining
the policy for holding
reserves stating why
they are held|Para
1.22|NTM Patient Care UK has no policy for holding
reserves and a policy is not considered
necessary as the charity has had limited
spending during this reporting period and a
single grant received. This will be considered in
future reporting years if necessary.| |Amount of reserves
held|Para
1.22|Signifcant funds were carried over from the
previous reporting period and as the charity has
had limited spending reserves are not
considerednecessary.| |Reasons for holding
zero reserves|Para
1.22|The charity has had limited spending over the
reporting period, so reserves are not considered
necessary.| |Details of fund|Para|N/A| |materiallyindefcit|1.24|| |---|---|---| |Explanation of any
uncertainties about
the charity
continuing as a going
concern|Para
1.23|N/A| ## **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|NTM Patient Care received a grant
from a pharmaceutical company
(£4,000.00) in January 2022.| |---|---|---| |Investment policy and
objectives including any social
investmentpolicy adopted|Para
1.46|N/A| |A description of the principal
risksfacingthe charity|Para
1.46|N/A| |Other||N/A| ## **Structure, Governance and Management** |Descriptionofcharity’strusts:||N/A| |---|---|---| |Type of governing document
(trust deed, royal charter)|Para
1.25|Constitution of the Charitable
Incorporated Organisation
(CIO)| |How is the charity constituted?
(e.g unincorporated association, CIO)|Para
1.25|Charitable Incorporated
Organisation (CIO)| |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 include founding
individuals, NTM patients and
HCPs to ensure the best
representation of the needs of
NTM patients.
More details of Trustee
selection are provided in the
Constitution.| ## **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|N/
A| |---|---|---| |The charity’s organisational structure and any wider network
with which the charityworks||N/
A| ||Para
1.51|| |---|---|---| |Relationship with any related parties|Para
1.51|N/
A| |Other||N/
A| ## **Reference and Administrative details** |Charityname|**NTM PatientCare UK**| |---|---| |Other name the
charity uses|**N/A**| |Registered charity
number|**1181372**| |Charity’s principal
address|**Royal Free London NHS Foundation Trust, Pond**
**St, Hampstead, London NW3 2QG**| ## **Names of the charity trustees who manage the charity during period of report** |1
2
3
4
6
7
8
9
1
0|**Trustee**
**name**|**Ofce**
**(if any)**|**Dates acted if**
**not for whole**
**year**
**Name of person (or body)**
**entitled to appoint**
**trustee(if any)**| |---|---|---|---| ||Prof Marc
Lipman|Trustee|| ||Dr Heather
Milburn|Trustee|| ||Shirley
Harwood|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 behalfof others**|**Funds held as custodian trustees on behalfof others**| |---|---| |Description 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 segregation of such assets
from the charity’s own assets|N/
A| ## **Additional information (optional)** ## **Names and addresses of advisers (Optional information)** |**Type of adviser**|**Name**|**Address**| |---|---|---| |Technical & Medical|John|Axiom Health Ltd,(Registered Ofce; 21| |Communications advisor|Hockley|Birch Drive, Billingshurst, West Sussex| |||RH14 9RH, UK).| **Name of chief executive or names of senior staff members (Optional information) 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)** Prof Marc Lipman **Position (eg Secretary, Chair, etc)** Chair **Date** **Charity Name No (if any) NTM Patient Care UK Receipts and payments accounts CC16a For the period** Period start date Period end date **To from** 11/2/2021 11/1/2022 |**Section A Receipts and payments**||||| |---|---|---|---|---| |**A1 Receipts**
StartingBalance
**25,123**
19/01/2022 Insmedgrant
**4,000**
21/10/2022 HMRC Charities
**119**
**-**
**-**
**-**
**29,242**
**-**
**-**
**_Sub total_ -**
**_Total receipts_ 29,242**
**A3 Payments**
08/11/2021 Ionos
**1**
11/11/2021 Ionos
**2**
13/12/2021 Ionos
**2**
30/12/2021 Ionos
**1**
31/01/2022 Axion Health Ltd
**1**
31/01/2022 Axiom
**2,098**
31/01/2022 Axiom
**6,480**
10/06/2022 Axiom
**3,436**
03/08/2022 NRS Printing
**57**
04/08/2022 Stefanie Carter Admin
**632**
05/09/2022 NRS
**33**
06/09/2022 Admin
**312**
31/10/2022 NRS
**23**
**_Sub total_ 13,078**
**-**
**-**
**_Sub total_ -**
**_Total payments_ 13,078**
**_Net of receipts/(payments)_ 16,164**
**A5 Transfers between funds**
**-**
**A6 Cash funds last year end**
**-**
**_Cash funds this year end_ 16,164**
**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 £**|**Last year**
**to the nearest £**| |||**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**25,123**
**4,000**
**119**
**-**
**-**
**-**
**-**
**-**
**29,242**|| |||||| |||||**-**| |||||**-**| |||||**-**| |||||**-**| |||||**-**| |||||**-**| |||||**-**| |||**-**
**-**
**-**||| ||||**-**
**-**
**-**|| |||||**-**| |||||**-**| |||||| |||**-**|**29,242**|**-**| |||||| |||**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**1**
**2**
**2**
**1**
**1**
**2,098**
**6,480**
**3,436**
**57**
**632**
**33**
**312**
**23**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**13,078**|**-**| |||||**-**| |||||**-**| |||||**-**| |||||**-**| |||||**-**| |||||**-**| |||||**-**| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||**-**| |||||| |||**-**
**-**
**-**|**-**
**-**
**-**|| |||||| |||||**-**| |||||| |||**-**|**13,078**|**-**| |||||| |||**-**
**-**
**-**
**-**|**16,164**
**-**
**-**
**16,164**|**-**| |||||**-**| |||||**-**| |||||**-**| ## **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
**_Total cash funds_**
(agree balances with receipts and payments
account(s))|**to nearest £**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
Agreement Error
OK
**to nearest £**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
Print Name
**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**| |---|---|---|---| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||OK| ||||**to nearest £**
**Endowment**
**funds**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**When due**
**(optional)**| ||||| ||||| ||||| ||||| ||||| ||||| ||||Date of
approval| ||||| |||||