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2023-01-31-accounts

Trustees’ Annual Report and Financial Statements For the year ended 31 January 2023

(Charitable Incorporated Organisation)

Registered charity number: 1171773

CMV Action Financial Statements Year ended 31 January 2023

Contents

Chair’s Foreword

Trustees’ Annual Report

2 to 3

4 to 10

Financial statements

Independent Examiner’s Report

11 to 14 12 12 12 13 to 14

15

1

CMV Action Financial Statements Year ended 31 January 2023

Trustees’ Report for the year ended 31 January 2023

Chair’s Foreword

During 2022 we saw a gradual return to “business as usual” operations for CMV Action after the restrictions of Covid-19. Whilst we continued to carry out many of our governance meetings by Zoom for much of the year, a return to face-to-face opportunities later in the year was much appreciated for the all the working benefits they allow.

We attended and exhibited at two major health professional conferences during 2022. Firstly, the Primary Care Public Health Conference at the NEC in Birmingham in May, and latterly at the Royal College of Midwives Annual Conference in Newport, Wales in October. Both events afforded us opportunities to speak to and discuss CMV with a wide range of health professionals and we were delighted to receive feedback including one quote: “ I’ve just had a personal masterclass in CMV. Thank you! That is so useful. ” Our new literature, and especially our new tear-off leaflet pad for midwives, was well received. Many copies of this new resource, which carries key messages about CMV, including a summary of the simple hygiene precautions that can reduce risk of infection, are intended for a midwife to hand to pregnant women at their booking appointment, were taken away to be used in midwifery practices and feedback for this, and our other information sources, was very positive.

We also produced a new leaflet “What Families and Childcare Providers Need to Know about CMV” to highlight the issues that women who have children who attend nurseries, and women who work closely with children in childcare settings should be aware of.

The highlight of last year was taking part in the International CMV conference CMV22 which took place in the UK in March. Unfortunately, this had to be held on-line but we were delighted to present at the Public Session which was very well attended by families and professionals.

During the year we have worked collaboratively with medical professionals involved in working with families affected by CMV. We were pleased to chair the CMV Session of the RCOG “An Update on Infections During Pregnancy” day and to deliver both on-line and face-to-face training sessions to teachers of the deaf and other professionals including the Scottish Sensory Service.

We were delighted to welcome three new Trustees – Alice, Graham and Lucy – to our Board. Each brings a range of different skills and experiences which will benefit CMV Action going forward.

In National Awareness Month, June 2022, we collaborated with our international colleagues in the US, Canada and New Zealand to raise awareness of CMV, and many of our supporters shared their family’s CMV journey to take part in our on-line “CMV: Faces and Stories campaign. We also had two articles published in midwifery journals Midwifery Matters and The British Journal of Midwifery.

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CMV Action Financial Statements Year ended 31 January 2023

As a charity we are so grateful to all our wonderful parents and supporters who raise money for us in all sorts of imaginative and sporting ways. Official events included the London Landmarks Half Marathon and the Great North Run. We have received a number of grants in 2022 including ones to translate resource materials into foreign languages as well as funds to support our conference attendance. We will continue to provide support and encouragement to all our current and future fundraisers, as well as looking for other sources of income to enable us to continue and expand our services going forward.

We continued to offer a high level of support to anyone affected by CMV, both by telephone, email or other avenues of support such as social media and a growing Facebook Support Group, giving people an opportunity to share experiences and stories.

We now look forward to 2023 with optimism and confidence, in good shape and firmly determined to continue to make a difference. Thank you to everyone who has supported us in 2022 With the help of professionals and families together we can bring about change.

Sarah Dewar Chair, CMV Action

Sarah Dewar Chair, CMV Action 18 November 2023

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CMV Action Financial Statements Year ended 31 January 2023

Introduction

The Trustees have pleasure in presenting their annual report on the activities of CMV Action (‘the Charity’) for the year ended 31 January 2023. This report sets out the activities for the year undertaken by the Trustees and the volunteers who have supported the Charity over the past year.

Our Trustees, Support Team and their advisers

The names of those individuals who served as Trustees of the Charity during the year and who were appointed subsequent to the year end is as follows:

Trustees

Trustees
Sarah Dewar Chair
Liz Estall
Alice Fletcher-Etherington Appointed 11 June 2022
Graham Jones Appointed 11 June 2022
Lucy Kelly Appointed 11 June 2022
Tom Kelman Treasurer
Amy Taylor
Angela Henry
Suzie Mills Resigned 12 November 2022
Support Team
Giles King IT adviser
Sharon Wood Project Manager
Medical advisers
Dr. Chrissie Jones Associate Professor of Paediatric Infectious Diseases,
Southampton University
Professor Asma Khalil Professor of Obstetrics and Maternal Fetal Medicine at St
George’s Hospital, University of London
Other advisers
Banker Lloyds Banking Group
Independent Examiner Mohammed Afzaal Bhatti (FCCA) KBM UK Ltd
Legal Advisor DLA Piper UK LLP

Our legal structure and governance

The Charity is an incorporated association which has been registered as a charity since 11 June 2012 with the Charity Commission for England and Wales. In February 2018 we became a CIO (Charitable Incorporated Organisation) under a relatively new legal structure available for charities or charitable groups that wish to be incorporated. The Charity is governed by a constitution for unincorporated associations as provided by the Charity Commission for England and Wales. The constitution sets out the objects of the Charity and how its activities are to be conducted and governed. A copy of the full constitution can be found on our website www.cmvaction.org.uk .

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CMV Action Financial Statements Year ended 31 January 2023

The Trustees are all volunteers who undertake many of activities of the Charity, including offering support to pregnant women, parents and professionals. They are assisted by volunteers who have experience of CMV. The Trustees’ carried out monthly meetings by Zoom. Our quarterly newsletter and website provide members with information on the current and the future activities the Trustees are undertaking to further the objects of the Charity. The Trustees welcome any questions or feedback from members and stakeholders at all times.

In appointing new Trustees, the existing Trustees undertake a proportionate recruitment process that identifies the skills needed for the role, advertise the role and interview candidates for the role prior to their selection.

Trustees undertake appropriate training to fulfil their role and to keep up to date with the law and regulations surrounding the governance and operation of the Charity. They pay particular attention to the clear guidance provided by the Charity Commission for England and Wales and endeavour to act in accordance with the 6 principles set out in the Good Governance – A Code for the Voluntary and Community Sector.

Our charitable objects

The three charitable objects of the Charity are as follows.

  1. To promote and protect the physical and mental health of families affected by congenital CMV through the provision of support, education and practical advice.

  2. To advance the education of the medical profession and the general public into congenital CMV and its implications for the family.

  3. To promote research into the causes, effects, prevention, treatment and management of congenital CMV and to disseminate the useful results thereof.

What we did in the past year

We would highlight the following actions as being a reflection of our success in the past year in meeting our objectives.

Objective What we set
out to do		 What we did The impact it
had		 What we learnt
**along the way **
1.To Support
families
affected by
CMV		 Appropriately
support
everyone
seeking advice
and assistance.		 We responded to
requests for advice
and information by
telephone email and
social media.
We regularly sought
advice from our
medical experts in
relation to medical
issues raised in
support requests to
ensure a correct and
consistent approach.
Our Private Facebook
Support Groups
continued to grow
and be a useful
platform for members
to share stories,
advice and
experiences.		 Responses after
support is given,
as well as
feedback on
twitter, Facebook
and the website
demonstrated
members deeply
value this work.
The group
currently has 426
members.		 Importance of
volunteers having
regular contact
and support.
We now respond
to a higher level of
enquiry requiring
medical
information as a
result of better
education of CMV.

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CMV Action Financial Statements Year ended 31 January 2023

2.To educate
professionals,
parents-to-be
and the general
public about
prevention of
CMV		 Continue
strategy to
change
professional
behaviour and
to raise
awareness		 Participated in
meetings with other
professionals and
contributed to training
sessions for
professionals.
Multi-approach to
engagement and
education through
channels available
during restrictions and
beyond.
Launched a range of
redesigned and
updated key literature.
Translations of our key
infographic into non-
English languages
commenced.
Enjoyed a return to
face-to-face exhibiting
and health professional
conference
participation.		 Raised awareness
through multi-
channel
opportunities,
nationally and
internationally.		 The charity can
use the experience
of the families we
support to help
educate
professionals on
the need for
awareness and
change.
Building credibility
with key
influencers and
professional
bodies is critical to
changing health
professional
behaviour.
3.To support
the
development
and
implementation
of research into
better
testing,
treatment and
management of
CMV		 Progressed
number of
research
priorities.		 Continued to support
the delivery of a major
piece of research
funded by the National
Institute for Health
Research to test the
feasibility and impact
of an antenatal
education intervention
in the UK (GAP-UK).
Provided PPI assistance
to a number of
research projects and
clinical trials.		 These projects will
provide important
evidence in the UK
for further
research and
lobbying.		 Patient and public
involvement is an
important aspect
of research bids
and CMV Action’s
support can make
a significant
contribution to
bids.
4.To build the
capacity of CMV
Action		 Improve our
financial
position and
build capacity
to deliver our
objectives		 Continued with our
commitment to
professional project
management and
fundraising.
Welcomed three new
Trustees to widen skills
and experience on the
Board.
Continued to develop
Trustee skills and
experience.		 Enabled CMV
Action to take
forward
educational,
research and
fundraising
activities that were
not feasible
working through
volunteers alone.
To ensure a
sustainable,
forward-thinking
organisation.		 The organisation
needs dedicated
staff to achieve
our objectives.

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CMV Action Financial Statements Year ended 31 January 2023

Impact of support activities

We have six regular support volunteers who are available to answer calls and emails of whom five are current or past trustees and one is a medical professional. All support volunteers have personal experience relating to CMV and have been involved with the charity for some time.

We operate a triage system. Support requests are received by an experienced trustee who will either offer support themselves or refers their query on to a trustee or volunteer depending on their experience and availability. We can also refer families to parents and grandparents who have been supported by CMV Action and have appropriate personal experience. We have two medical advisors, Dr C Jones and Professor Asma Khalil, who we can contact to assist with particularly complex medical enquiries.

In the year 1 February 2022 to 31 January 2023, we supported over 250 families via telephone, email, Facebook, and social media channels such as Twitter and Instagram. This included 92 telephone calls and 77 emails as the first point of contact. Support volunteers will offer support for as long as required so may be involved with an expecting couple or a family for a long period.

We had over 21,000 visitors to our website pages and responded to numerous requests for our literature. All items are downloadable from our website and our key infographic is available in 6 non-English languages. CMV Action has over 650 members and 1,300 subscribers who regularly receive updates and information on CMV. We also have a Facebook group CMV Action UK-family support which currently has over 400 members. This gives families the opportunity to request advice and support each other.

To comply with GDPR we only kept the details of those who consented to their data being retained. Other information is held in an anonymised support log. Details of families we support are never passed to a third party without their permission.

Support volunteers regularly report that the type of support request is gradually changing, and more people who contact us have had a diagnosis of CMV during pregnancy or are aware of CMV and want to learn how to minimise their risks. We regularly support those who have lost their baby. There is now the possibility of treatment during pregnancy in appropriate cases as well as treatment for new born babies. This has resulted in regular communication with our medical advisers to ensure we were giving the most up to date information in line with recent medical research.

Support volunteers work from home using their own computers and phones. Contact with other volunteers is important and support volunteers engage with each other regularly. We discuss what support to give and any concerns our volunteers have. At support meetings we discuss recent challenging or difficult cases and best practise on how to answer the issues raised.

We regularly receive positive feedback on the support we give from both those we support but also from medical professionals.

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CMV Action Financial Statements Year ended 31 January 2023

Impact of awareness and education activities

We were delighted to return to some of our customary face-to-face awareness and education activities with health professionals as the Covid restrictions began to lift during 2022. In May we exhibited at the Primary Care Public Health Conference at NEC Birmingham and in October we returned to the RCM Annual Conference in Newport.

Both events afforded us opportunities to speak to and discuss CMV with a wide range of health professionals and to distribute our newly launched literature. Our new tear-off leaflet pad for midwives was particularly well received. A tear-off page provides a summary of CMV and the simple hygiene precautions that can reduce risk of infection and is intended for a midwife to hand to pregnant women at their booking appointment, as a result of hearing from midwives that a barrier to discussing CMV is often simply pressure of time. Many copies of this new resource were taken away to be used in midwifery practices and many more have been ordered since as a result of several CMV articles we had published in midwifery journals.

We were pleased to take part in the CMV Session of the RCOG “An Update on Infections During Pregnancy” day and to deliver both on-line and face-to-face training sessions to teachers of the deaf and other professionals during the year.

Work commenced on translating our literature and resources to reach those where language is a barrier. We added a facility to our website, our key platform for professionals and members of the public alike, to translate content into almost any language in the world. We translated our key infographic into six of the most commonly used non-English languages in the UK – Polish, Romanian, Panjabi, Urdu, Arabic and Bengali – and these are available as downloads in the resource section of our website.

We built on our collaboration with other charities and like-minded organisations through membership of the Pregnancy and Babies Charities Network and the All-Party Parliamentary Group on Baby Loss. We also collaborated with international partners in relation to activities for June’s National Awareness Month.

Our Facebook messages reached around 100,000 people which was down on the previous year due to the previous year having a very strong presence around the campaign for screening. We also placed more paid for posts in the previous year. Followers have increased by 3% to 4358. Visits to our Facebook page increased by 81% and likes of the page increased by 100%. The best performing post reached over 15,000 people driving nearly 360 people to visit the website.

Instagram followers increased to 692 (up from 492) and the best performing post reached over 10,000 accounts. Twitter remains consistent with 3361 followers and an average reach per week of 3,000 people.

Our Private Facebook Support Group continues to grow with over 400 now taking part in discussions and sharing experiences.

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CMV Action Financial Statements Year ended 31 January 2023

Impact of research activities

This year CMV Action continued to support the delivery of a major piece of research funded by the National Institute for Health Research (NIHR) to test the feasibility and impact of an antenatal education intervention in the UK. The RACE-FIT – Reducing Acquisition of CMV through Antenatal Education/CMV GAP).

We were also consulted and partnered, as the patient representative organisation for cCMV, on a number of research applications.

Fundraising Summary

The total funds raised from February 2022 to January 2023 was £42k.

Official events included the London Landmarks Half Marathon and the Great North Run. Due to difficulties filling all places at events we decided not to commit to places in future and have instead sourced places via an agreement with Run for Charity. This gives us access to over 350 fundraising events without committing to places which we cannot fill.

We had 17 people taking part in other events and fundraisers which was up on the 13 people from the year before. However, at around £11.5k the funds raised were slightly lower than the year before. There is no doubt that the post covid environment plus the cost-of-living crisis is having an impact on the willingness of people to both raise money and to donate.

We have successfully received several grants in 2022/23 including ones to translate all our materials into foreign languages as well as funds to support our conference attendance. In all over £14,390 was received.

Our Fundraisers

Apart from the time given freely by the Trustees and the volunteers who assist us on our support line, the Charity relies heavily on donations from individual members of the public and on monies raised from fundraising events to finance its activities. During the past year we are indebted to those who have given us money and their time to help organise and participate in events that have raised funds. We therefore thank everyone for their continued support without which we would be unable to pursue our objectives.

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CMV Action Financial Statements Year ended 31 January 2023

Financial Commentary

The Charity saw its net assets decrease by £14,082 from £144,189 to £130,107 and this was due to a reduced level of donations and income from fundraising events bolstered by the receipt of three grants amounting in a combined income total to £42,433 whilst our expenses amounted in total to £56,515.

The Trustees are fully aware that they have a responsibility to apply these reserves to further the objects of the Charity and so have agreed a strategy for the coming three years ended 31 January 2026 for this purpose. This will see the Trustees continue to apply some of the reserves to further the Charity’s objects whilst also continuing to retain reserves to mitigate risk and to fund innovation and future developments.

The Trustees have yet to consider and document a formal reserves policy.

The Trustees have yet to consider and document a formal investment policy but have sought security and liquidity in preference over yield given the low level of reserves currently held by the Charity and the low level of reward offered by deposit takers.

The Trustees have identified the main risks the Charity faces, and these are the reliance on donations and fundraising with no regular annuity, and the reputational risk that could arise from giving bad advice to members or issuing incorrect educational material on CMV. The Trustees’ have controls in place to manage and mitigate these risks.

The Trustees have considered the going concern status of the charity in light of the pandemic and have no reason to believe that the charity will be unable to meet its debts and conduct its activities for the foreseeable future beyond the twelve months from the date of signing this annual report.

Tom Kelman

Honorary Treasurer 18 November 2023

10

CMV Action Financial Statements Year ended 31 January 2023

CMV Action

Statement of Financial Activities For the year ended 31 January 2023

Incoming resources
Incoming resources from generated funds
Fundraising events, donations, grants
Merchandise sales
Bank interest
Total incoming resources
Resources expended
Costs of generating funds
Fundraising events & Donations
Fundraising trading: costs of goods sold
Total costs of generating funds
Charitable activities
Project management costs
Community fundraiser costs
Other direct costs
Total charitable activities costs
Governance costs
Trustees’ expenses
Depreciation of fixed assets
Total governance costs
Total resources expended
Net movement in funds
Total funds brought forward
Total funds carried forward		 Notes 2023
£
£
£
Restricted
Unrestricted
Total		 2022
£
£
£
Restricted
Unrestricted
Total
1
2
3		 14,390
27,531
41,921
-
-
511
511		 2,622
44,921
47,543
-
137
137
-
42
42
14,390
28,043
42,433		 2,622
45,100
47,722
-
(1,420)
(1,420)
-
-
-		 -
(1,352)
(1,352)
-
(212)
(212)
-
(1,420)
(1,420)		 -
(1,564)
(1,564)
(5,000)
(23,779)
(28,779)
(2,500)
(10,044)
(12,544)
(6,890)
(4,914)
(11,804)		 -
(23,634)
(23,634)
-
(8,283)
(8,283)
(2,622)
(4,475)
(7,097)
(14,390)
(38,737)
(53,127)		 (2,622)
(36,392)
(39,014)
-
-
-
-
(1,968)
(1,968)		 -
-
-
-
(377)
(377)
-
(1,968)
(1,968)		 -
(377)
(377)
(14,390)
(42,125)
(56,515)		 (2,622)
(38,333)
(40,955)
-
(14,082)
(14,082)
-
144,189
144,189		 -
6,767
6,767
-
137,422
137,422
130,107
130,107		 -
144,189
144,189

All of the above results are derived from continuing activities.

There were no other recognised gains or losses other than those stated above.

The notes on page 13 to 14 form part of these financial statements.

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CMV Action Financial Statements Year ended 31 January 2023

CMV Action

Statement of Financial Position As at 31 January 2023

Notes
Fixed Assets
4
Tangible Fixed Assets
Intangible Fixed Assets
Total Fixed Assets
Current assets:
Debtors - prepayments
5
Cash at bank and in hand
Total current assets
Liabilities:
Creditors: Amounts falling due within one year - accruals
6
Net Current Assets
Net assets
The funds of the charity:
Total unrestricted funds
Total restricted funds
Total unrestricted funds
Statement of Cash Flows
For the year ended 31 January 2023
Reconciliation of changes in resources to net cash
inflow from operating activities
Net incoming/(outgoing) resources
Purchase of Tangible and Intangible Fixed Assets
Depreciation of Fixed Assets
Decrease / (Increase) in debtors
(Decrease) / Increase in creditors
Net cash (outflow)/inflow from operating activities
Net funds at 1 February
Net funds at 31 January		 2023
£
2022
£
1,119
532
2,872
2,200
3,991
2,732
-
709
128,220
141,588
128,220
142,297
(2,103)
(840)
126,117
141,457
130,107
144,189
130,107
144,189
-
130,107
144,189
2023
£
2022
£
(14,082)
6,767
(3,227)
(3,109)
1,967
377
710
(709)
1,263
(1,307)
(13,369)
2,019
141,588
139,569
128,220
141,588

The notes on page 13 to 14 form part of these financial statements.

The financial statements were approved and authorised for issue by the Trustees and signed on their behalf by:

Tom Kelman

Honorary Treasurer 18 November 2023

12

CMV Action Financial Statements Year ended 31 January 2023

CMV Action

Notes to the financial statements

1. Statement of accounting compliance Convention

The financial statements are prepared in accordance with applicable accounting standards in the United Kingdom and under the historical cost convention and comply with the current Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and the Republic of Ireland (FRS 102) and the Charities SORP (FRS 102) and the Charities Act 2011.

2. Statement of accounting policies

Going concern

There are no material uncertainties about the charity’s ability to continue undertaking its activities in the coming twelve months from the date on which the financial statements were approved by the Trustees.

Recognition of income

Income attributable to the financial year is recognised as follows:

Resources expended

All expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all costs related to the category. A further analysis of the expenditure on Trustees’ expenses is given in note 3. below.

Tangible and Intangible fixed assets and depreciation and amortisation

Tangible and Intangible fixed assets with a cost more than £500 are capitalised at cost. Depreciation and amortisation of fixed assets is charged at rates estimated to write off their costs or valuation (less any residual value) over their estimated useful lives commencing in the month of acquisition and over three years using straight-line rates of depreciation and amortisation.

3. Trustees’ expenses

As a result of the Trustees not travelling to meet each other and conducting their meeting over Zoom over the two-year impacted by Covid there were no Trustees expenses incurred in either year.

13

CMV Action Financial Statements Year ended 31 January 2023

CMV Action

Notes to the financial statements (continued)

4. Fixed Assets – Tangible and Intangible

Cost
At 1 February 2022
Additions
At 31 January 2023
Depreciation
At 1 February 2022
Charge in year
At 31 January 20231,
Net book value as at 31 January 2023
Net book value as at 31 January 2022		 Tangible
Intangible
Total
£
£
£
709
2,400
3,109
1,019
2,208
3,227
1,728
4,608
6,336
177
200
377
432
1,535
1,967
609
1,735
2,345
1,119
2,873
3991
532
2,200
2,732

5. Debtors – prepayments and accrued income

2023 2022
£ £
Prepaid exhibition fees - 709

6. Creditors: Amounts falling due within one year – accruals


Project Manager’s fees and expenses
Community Fundraiser Fees
Total accruals		 2023
2022
£
£
888
-
1,215
840
2,103
840

14

CMV Action Financial Statements Year ended 31 January 2023

Independent Examiner’s report to the Trustees’ of CMV Action Charity No.1171773

I report to the trustees on my examination of the financial statements of the above charity for the year ended 31 January 2023.

Responsibilities and basis of report

As the charity's trustees, you are responsible for the preparation of the financial statements in accordance with the requirements of the Charities Act 2011 (“the Act”).

I report in respect of my examination of the Charity’s financial statements carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent examiner's statement

I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect:

  1. accounting records were kept in respect of the charity as required by section 130 of the Act; or

  2. the financial statements do accord with those records; or

  3. the financial statements do comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair' view which is not a matter considered as part of an independent examination.

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.

20/11/2023.

Mohammed Afzaal Bhatti FCCA Independent Examiner

K B M UK Limited 1 Concord Business Centre Concord Road London UK W3 0TJ

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