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2023-11-01-accounts

Trustees’ Annual Report for the period

From 02/11/2022 Period start date To 01/11/2023 Period end date

Charity name: NTM PATIENT CARE UK

Charity registraFon number: 181372

ObjecFves and AcFviFes

The purpose of NTM Pa9ent Care UK is to provide informa9on and support to pa9ents with NTM. We also work with Healthcare Professional (HCP) teams to improve understanding of pa9ent needs, co-ordina9ng and facilita9ng the transfer of informa9on in both direc9ons between the two.

This purpose is set out in the Cons9tu9on as the following objec9ves; Summary of the purposes of the Working to improve the lives of people with non-tuberculous mycobacterial charity as set out in its (NTM) infec9on in the UK, in par9cular, but not exclusively, by; governing document a) the provision of educa9on and informa9on to increase understanding of NTM in both the clinical and pa9ent communi9es. b) the development and implementa9on of a support network for NTM pa9ent communi9es.

Summary of the main
ac9vi9es in rela9on to
those purposes for the
public beneft, in
par9cular, the
ac9vi9es, projects or
services iden9fed in
the accounts.
Main ac9vi9es for the repor9ng period include the following:
a) The charity holds regular Zoom mee9ngs for pa9ents and HCPs with an
interest in NTM. Mee9ngs have included presenta9ons on areas relevant to
pa9ents such as physio, pharmacy, microbiology and diete9cs, as well as general
Q & A sessions. Mee9ngs also provide a forum for pa9ents to share and discuss
their experiences of NTM and associated issues.
b) The charity con9nues to develop and improve the NTM Pa9ent Care UK
website to provide informa9on and support to pa9ents.
c) The charity con9nues to develop posters and leafets for distribu9on in
respiratory clinics and other relevant loca9ons.
d) The charity con9nues to raise awareness of NTM within the medical
community and ac9vely engages pa9ents and their wider support community.
e) The NTM Pa9ent Care UK Management Group hold regular mee9ngs to
develop strategies for the pa9ent associa9on to help meet its intended goals.
f) The charity has established a social media presence on Facebook and has set
up a Facebook support and discussion group. A Linked-in site was set up but has
been discon9nued due to lack of interest.
g) A UK pa9ent forum has been set up on the NTMir site, based in the USA.
NTMir has a global reach.
h) The charity is embarking on a range of fundraising measures in order to
con9nue with its work.
Statement confrming
whether the trustees
have had regard to the
guidance issued by the
Charity Commission on
public beneft
The trustees have had regard to the Charity Commission’s guidance on public
beneft.

Achievements and performance

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.		 Main ac9vi9es for this repor9ng period have included the following;
a) Ongoing provision of support and informa9on specifc to pa9ents mainly via
email and phone.
b) Maintenance of the NTM Pa9ent Care website that provides pa9ents with a
source of informa9on and advice, including pa9ent stories, frequently asked
ques9ons, news stories, research informa9on, links to other sources, and
informa9on on maXers such as physiotherapy and mental health.
c) Ongoing provision of regular Zoom mee9ngs to provide relevant informa9on
and support specifc to pa9ents. This has not only improved support available to
pa9ents but has also provided an opportunity for informal interac9on between
pa9ents and HCPs. This has led to an improved understanding of NTM and the
pa9ent experience within both groups.
d) The charity is working with HCPs to produce Standards of Care for the health
service. These are due to be published in 2024.
e) Informa9on is regularly posted on Facebook on a range of subjects including
dates of mee9ngs, research informa9on, conferences, YouTube videos and other
relevant informa9on. The number of followers is growing.
f) The Facebook discussion and support group gives pa9ents, carers and HCPs an
opportunity to interact, ask ques9ons and support each other with shared
experiences.
g) The forum set up with NTMir is now live. It is for pa9ents and carers only but
has aXracted liXle interest.
h) A Just Giving fundraising page has been set up and the frst charity fundraiser
launched.

Financial review

Review of the charity’s
fnancial position at the
end of the period		 The charity remains in positive balance.
Statement explaining
the policy for holding
reserves sta9ng why
they are held		 The charity has no policy for holding reserves and a policy is not considered
necessary as income for the period far exceeded expenditure. This will be
considered in future repor9ng years if necessary.
Amount of reserves
held		 Due to the healthy state of fnances, reserves are not considered necessary
Reasons for holding
zero reserves		 The charity receives more than it spends so reserves are not considered
necessary.
Details of fund
materially in defcit		 N/A

Explanation of any uncertainties about the N/A charity continuing as a going concern

AddiFonal informaFon

The charity’s principal sources of funds
(including any fundraising)		 The charity received income of £21,405 made up of two
grants from a pharmaceutical company (£9,500 in March
2023 and £9,500 in October 2023) and the remainder from
donations and fundraising.
Investment policy and objectives including
any social investment policy adopted		 N/A
A description of the principal risks facing
the charity		 N/A

Structure, governance and management

Description of charity’s
trusts		 N/A
Type of governing
document
(trust deed, royal
charter)		 Cons9tu9on of the Charitable Incorporated Organisa9on (CIO)
How is the charity
cons9tuted?
(e.g unincorporated
associa9on, CIO)		 Charitable Incorporated Organisa9on (CIO)
Trustee selec9on
methods including
details of any
cons9tu9onal provisions
e.g. elec9on to post or
name of any person or
body en9tled to appoint
one or more trustees		 Trustees include founding individuals, pa9ents and HCPs to ensure the best
representa9on of the needs of pa9ents with NTM.
More details of Trustee selec9on are provided in the Cons9tu9on.

Reference and administraFve details

Charity name NTM Patient Care UK
Other name the charity
uses		 N/A
Registered charity
number		 1181372
Charity’s principal
address		 Royal Free London NHS Foundation Trust, Pond Street, 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) entitled to
appoint trustee (if any)
Professor Marc Lipman Trustee
Professor Heather
Milburn		 Trustee
Shirley Harwood Trustee
Graham Lake Trustee From June 2023
Dr Tanya Sinnett Trustee From November 2022

Funds held as custodian trustees on behalf of others

Description of 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

AddiFonal informaFon (opFonal)

Type of adviser Name Address
Technical and medical
communications advisor		 John Hockley Axiom Health Ltd
Registered ofce: 21 Birch Drive, Billingshurst, West
Susses RH14 9RH

DeclaraFons

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

Signed on behalf of the charity’s trustees
Signature:
Full name(s): Professor Marc Lipman
Position (e.g., secretary, chair): Chair
Date:
Charity Name Charity Name Charity Name Charity Name Charity Name No(if any) No(if any)
NTM Patient Care UK
Receipts andpayments accounts
For the period
from		 Period start date To Period end date
11/2/22 11/1/23
Section A Receipts and payments
Unrestricted
funds		 Restricted funds Endowment
funds		 Total funds
to the nearest £ to the nearest £ to the nearest £ to the nearest £
A1 Receipts
Paypal Donation 10/1/23 751
Insmed Grant 9/3/23 9,500
Just Giving Donation 19/6/23 83
Just Giving Donation 3/7/23 79
Just Giving Donation10/7/23 67
Just Giving Donation 14/8/23 102
Just Giving Donation 4/9/23 10
Just Giving Donation 18/9/23 102
Just Giving Donation 20/9/23 60
Just Giving Donation 26/9/23 17
Just Giving Donation 2/10/23 122
Personal Donation 3/10/23 30
Just Giving Donation 4/10/23 14
Personal Donation 3/10/23 20
Adept Field 5/9/23 250
Just Giving Donation 9/9/23 73
Just Giving Donation 10/10/23 5
EUI Ltd 11/10/23 329
Insmed Grant 12/10/23 9,500
Personal Donation 13/10/23 230
Just Giving Donation 18/10/23 11
Adept Field 26/10/23 50
Sub total_(Gross income for AR) _
21,405
A2 Asset and investment sales,
(see table).
- 0 - 0 - 0 -
- 0 - 0 - 0 -
Sub total
- 0		 - 0 - 0 -
**Total receipts **
21,405		 - 0 - 0 Cross Add Error
A3 Payments
NRS Printing 24/11/22 191
NRS Printing 24/1/23 33
IONOS 13/2/23 7
Website etc 13/3/23 300
IONOS 15/3/23 7
NRS Printing 20/3/23 14
Website etc 31/3/23 400
IONOS 13/4/23 7
NRS Printing 21/4/23 11
Website etc 27/4/23 400
NRS Printing 4/5/23 11
IONOS 11/5/23 4
IONOS12/5/23 4
NRS Printing 30/5/23 18
NRS Printing 30/5/23 89
Website etc 30/5/23 400
IONOS 13/6/23 12
Website etc 28/06/23 300
IONOS 12/7/23 12

CCXX R1 accounts (SS)

11/08/2024

1

IONOS 11/8/23 12
NRS Printing 1/9/23 45
IONOS 13/9/23 12
NRS Printing 22/9/23 14
IONOS 11/10/23 12
Tshirts 36
**Sub total **
2,350
A4 Asset and investment
purchases,(see table)
- 0 - 0 - 0 -
- 0 - 0 - 0 -
**Sub total **
- 0		 - 0 - 0 -
**Totalpayments **
2,350		 - 0 - 0 Cross Add Error
**Net of receipts/(payments) **
19,055		 - -
A5 Transfers between funds - 0 - - -
A6 Cash funds lastyear end - 0 - - -
**Cash funds thisyear end **
19,055		 - -
Section B Statement of assets and liabilities at the end of the period
Categories Details Unrestricted
funds		 Restricted funds
to nearest £ to nearest £
B1 Cash funds - -
- -
30,087 -
Total cash funds 30,087 -
(agree balances with receipts and payments
account(s))		 Agreement Error
Unrestricted
funds		 Restricted funds
Details to nearest £ to nearest £
B2 Other monetary assets - -
- -
- -
- -
- -
- -
Details Fund to which asset
belongs		 Cost (optional)
B3 Investment assets -
-
-
-
-
Details Fund to which asset
belongs		 Cost (optional)
B4 Assets retained for the
charity’s own use		 -
-
-
-
IONOS 11/8/23 12
NRS Printing 1/9/23 45
IONOS 13/9/23 12
NRS Printing 22/9/23 14
IONOS 11/10/23 12
Tshirts 36
**Sub total **
2,350
A4 Asset and investment
purchases,(see table)
- 0 - 0 - 0 -
- 0 - 0 - 0 -
**Sub total **
- 0		 - 0 - 0 -
**Totalpayments **
2,350		 - 0 - 0 Cross Add Error
**Net of receipts/(payments) **
19,055		 - -
A5 Transfers between funds - 0 - - -
A6 Cash funds lastyear end - 0 - - -
**Cash funds thisyear end **
19,055		 - -
Section B Statement of assets and liabilities at the end of the period
Categories Details Unrestricted
funds		 Restricted funds
to nearest £ to nearest £
B1 Cash funds - -
- -
30,087 -
Total cash funds 30,087 -
(agree balances with receipts and payments
account(s))		 Agreement Error
Unrestricted
funds		 Restricted funds
Details to nearest £ to nearest £
B2 Other monetary assets - -
- -
- -
- -
- -
- -
Details Fund to which asset
belongs		 Cost (optional)
B3 Investment assets -
-
-
-
-
Details Fund to which asset
belongs		 Cost (optional)
B4 Assets retained for the
charity’s own use		 -
-
-
-

CCXX R2 accounts (SS)

11/08/2024

2

-
-
-
-
-
Details Fund to which
liability relates		 Amount due
(optional)
B5 Liabilities -
-
-
-
-
Signed by one or two trustees on behalf
of all the trustees		 Signature Print Name

CCXX R3 accounts (SS)

11/08/2024

3

CC16a

Last year to the nearest £

- 0 - 0 - 0

CCXX R4 accounts (SS)

11/08/2024

4

- 0 - 0 - - - -

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-
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Endowment funds to nearest £ - - - - OK Endowment funds to nearest £ - - - - - - Current value (optional) - - - - - Current value (optional) - - - -

CCXX R5 accounts (SS)

11/08/2024

5

When due (optional) Date of approval

CCXX R6 accounts (SS)

11/08/2024

6