2022-11-01-accounts - Ntm Patient Care UK

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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

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		- - - - - - - - -	1 2 2 1 1 2,098 6,480 3,436 57 632 33 312 23 - - - - - - - - 13,078	-
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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
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			Date of approval