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2023-12-31-accounts

National Tremor Foundation Charitable Trust

Report & Financial Statements for the year ended 31 December 2023 Charity number: 1042013

National Tremor Foundation Charitable Trust

Contents

Trustees' Annual Report (consisting of:) Page
Objective and activities 1
Achievements & Performance 1
Board Activity 2
Communications & Digital 3
Research 5
Essential Tremor in Children and Young People 5
Public Benefit Statement 6
Financial Review 6
Reference and Administrative Details 7
Governance, Management and Structure 7
Responsibilities of Trustees 8
Independent Examiner’s Report 9
Statement of Financial Activities 10
Balance Sheet 10
Notes forming part of the financial statements 11

National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2023

Objectives and Activities

The Trust’s legal purpose (objects) is:

The Trust is currently able to resource these charitable activities:

Achievements and Performance

This section explains the activities for the reporting period; NTF generated a respectable amount of income for 2023, but substantially less than 2022. Expenditure also exceeded income, which is a rare occurrence, to make necessary improvements and developments to our website, which is an important source of information and engagement for the public, and most importantly people living with neurological tremors.

The Charity is always conscious about keeping costs to a minimum and maintain the central office support facility .

Honorary President Lord Julian Fellows

We are delighted and honoured to continue to have Lord Julian Fellowes as Honorary President of the NTF. Lord Fellowes is world renowned for creating the hugely successful and critically acclaimed TV period drama Downton Abbey. In a recent newspaper interview, he revealed that he lives with Essential Tremor. In the last ever episode of Downton Abbey, Lord Fellowes wrote into the script a character who suffered with Essential Tremor and in doing so raised a great amount of awareness for this little-known condition.

Lord Fellowes was born in Cairo, Egypt, educated in Britain before moving to Los Angeles in 1981 and returned to the UK in 1991. He is well known as an actor, novelist, screenwriter and film director and his career spans over 40 years. Lord Fellowes has been a member of the House of Lords since January 2011. He is also chairman and patron of several UK charities.

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National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2023

Board Activity

The NTF was able to raise significant funds and continue its work to support people with essential tremor. The 2023 income was considerably lower than 2022, however in 2022 the Charity benefited from a significant number of legacies by generous supporters.

Our support groups have continued to meet regularly in-person during 2023, also having the option of attending one of the 14 online events throughout the year, co-hosted by Jackie Farrell and Duncan Crossland. The online events have been a huge success having an overall turnout of 618 people for the year. The success of these events is evidently down to the time and commitment put in by both Jackie and Duncan.

Three major events were organised by, or in collaboration with, the NTF during this year. These were ‘Support Yourself, Support Others’ event in June, our political campaign to raise awareness with Members of Parliament in August and the Essential Tremor Awareness Day in October. Further details about these events can be found below.

Support Yourself, Support Others, Manchester, 16[th] June 2023

“Support Yourself, Support Others” in Manchester, was well attended hosted by Jackie with guest speakers: Karen Hull, Neurological Physiotherapist; Gavin Thompson, Warrington Disability Partnership; and Anthony Murphy, Young Adult with ET.

Political campaign

In August 2023, a campaign was launched to engage local Members of Parliament (MPs) and raise awareness about the need to improve access to MR-Guided Focused Ultrasound (MRgFUS) treatment centres. The NTF encouraged the neurological community to send letters to their local MPs as part of this effort.

Essential Tremor Awareness Day, London, 7[th] October 2023

Essential Tremor Awareness Day, held at The Royal National Hotel in October 2023, aimed to raise awareness about Essential Tremor (ET) and its treatments, while also providing support to individuals affected by the condition. The event was co-hosted and supported by Insightec and attracted over 60 delegates from London and across the UK, including attendees from Cornwall and Yorkshire. The day featured expert speakers, interactive sessions, and a unique "Carousel of Chat" concept to facilitate discussions on living with ET.

The speakers at the Essential Tremor Awareness Day event were:

  1. James Blann (Insightec) - He facilitated the event and opened the proceedings.

  2. Professor Ludvic Zrinzo (The National Hospital for Neurology and Neurosurgery) - He provided an overview of Essential Tremor, discussed treatment options, and explained the science behind surgical approaches like deep brain stimulation and ablation.

  3. Karen Hull (Neuro-Physiotherapist from Bradford) - She focused on the importance of balance in managing Essential Tremor and shared techniques to improve core stability.

  4. Jackie Farrell (National Tremor Foundation Support Group Coordinator) - She gave a talk on the benefits of mindfulness and meditation for reducing tremor amplitude.

  5. Oscar Gomez-Reaney (Young Adult Living with Essential Tremor) - He spoke about his personal experience with Essential Tremor as a young adult, highlighting that the condition affects people of all ages.

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Trustees’ Annual Report for the Year Ended 31 December 2023

National Tremor Foundation Charitable Trust

The Board of Trustees met in January, April, July and October during 2023, these meetings supported the general business and the Trustees began a review of its management arrangements and policies. The board agreed to initially Amanda Fry from February 2023 and then Phoebe Dann from November 2023 to provide the Trustees with administrative support. Everyone at the NTF would like to thank them for their support and diligence during this time.

A programme of meetings were arranged for 2024 to review the strengths and weaknesses of the NTF and what we felt needed to be our priorities for the forthcoming two to three years.

Communication and Digital Report

Digital overview

The NTF’s website is the main means for the charity to communicate to the public. In 2023 it drove 250,775 users a year from across the globe. It provides a range of information on tremors (from diagnosis and clinical characteristics to research topics and help for carers), support group events and news.

Below is a SWOT analysis identifying areas for improvement, opportunity, and areas that could be at risk.

Strengths (internal)
1. Improved online donations process
2. Improved signing up for events and support
events
3. Strong digital support network of potential
volunteers
4. Surveys are helping us make better informed
decisions.
5. Only charity representing ET which is driving
traffic to the website.		 Opportunities (external)
1. Demand for people to get involved in the
NTF as volunteers.
2. Text message (SMS) marketing.
3. Need for more newsletters.
4. More non-clinical research on website.
5. More device research on website.
6. Opportunities for clinical trials on website.
7. Men with ET campaign.
8. More personal stories and coping tips.
Weaknesses (internal)
1. Still operating reactively not proactively due
to limited capacity.
2. Audience data is limited and need to
understand our audiences to conduct
marketing more effectively.
3. Need additional support for Support Groups
4. Lack of awareness in schools and health care
settings
5. Need to develop audience loyalty and
advocacy.
6. Need for formal representation in Scotland.
7. Data needs segmenting.
8. Need for expert panel to deliver content.
9. Need for brand guidelines.
10. Need for brand guidelines for support
groups.
11. Need to focus on push marketing i.e. paid
advertising
12. Need more video content.		 Threats (external)
1. Economic issues affecting online donations
2. Growth in dependence on charities for
digital support due to NHS being
overburdened
3. Increase in competition for digital
engagement from other charities.
4. Increasing demand for a Scottish
representation.
5. Demand for representation for ET only.

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National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2023

Target stakeholders

*We also need to take into consideration the families of people with tremor.

Website

Below shows how the number of website users has increased.

Year Value Percentage Increase
2023 250,775 3% 250,775 3%
2022 242,278 35% 242,278 35%
2021 179,215 179,215

Website audiences

Google Advertising

The NTF receives a Google Grant to give the charity free but limited online advertising. Constant management of the NTF’s online advertising has meant that on average an extra 1600 people are visiting the website a month.

Furthermore, the NTFs Social media network has continued to grow with our established Facebook channel being popular and Twitter attracting increased interest.

Newsletter

In 2023 the e-newsletter is being distributed to over 3500 people a month with an average open rate of 49% which is higher than other charities.

Below is a bar chart showing newsletter performance.

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National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2023

Online donations

In 2023 online donations have begun to increase despite economic uncertainty.

2023 £3491
2022 £2740
2021 £5073

Research

Research continues to be undertaken, although there were no calls on the Foundation’s finances for a contribution.

Imperial College NHS Trust continues to treat sufferers with MRgFUS although the number of treatments they are able to deliver is limited and they are currently the only NHS funded centre in England. That inevitably means that waiting lists will grow.

Essential Tremor in Children and Young People

The NTF continue to have a Children’s Liaison Officer, the Chair of the Board of Trustees Kitty Reilly. Kitty sees her main role as a supportive one in the first instance, followed by raising awareness through our website about children with ET and social media campaigns.

Coronation Street Actor Rob Mallard, NTF Patron for Young People

In October 2023 the NTF was delighted to announce the appointment of Rob Mallard, widely recognized for his role as Daniel Osborne on the popular television series Coronation Street , as a new patron focused on young people. This appointment marks a significant milestone in increasing awareness of the challenges faced by young individuals living with neurological tremors.

About Rob Mallard’s Advocacy

Rob Mallard, in addition to his television work, has been a prominent advocate for those living with essential tremor (ET). He has spoken openly on television, radio, and at public events, sharing his personal journey and experiences with essential tremor. His involvement has also been notable during National Essential Tremor Awareness Month, where he actively promotes understanding of the condition in collaboration with the NTF.

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National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2023

Statements from Rob Mallard and NTF Chair Kitty Reilly

Rob said: “I am thrilled to be joining the NTF. As someone who has been living with ET for most of my life, I am acutely aware of the importance of their work and I’m proud to join them in spreading awareness and understanding of this debilitating condition.” NTF Chair Kitty Reilly said: “The National Tremor Foundation are absolutely delighted to welcome Rob Mallard as a patron of the charity. With Robs lived experience of essential tremor and TV popularity, this will certainly go a long way to raising awareness of people living with neurological tremors and the impact this has on their lives.”

Looking Ahead

The NTF looks forward to continuing its partnership with Rob Mallard, aiming to raise awareness and promote better understanding of essential tremor and its effects on young people’s lives. His advocacy and personal experience with ET will play a crucial role in advancing the foundation’s mission and supporting those affected by this challenging condition.

Annual Meeting

The annual meeting was a great success.

Fundraising Review

The Foundation continued with support from many Charitable Trusts throughout the year. Postal applications and personal visits enabled funding to be obtained at low costs. Applications were generally for basic core costs.

The continuing low investment interest rates obtained by trust funds has again reduced the amount of money for distribution to beneficiaries and The Foundation greatly appreciates the support from all Charitable Trusts. During a difficult period, the Foundation did manage to raise managed to raise £125,000 and spent over £70,000 maintaining its communication links and supporting sufferers.

Plans for 2024

  1. To develop the NTF 3-year strategy and focus our activity around raising awareness, fundraising and increasing our volunteer capacity

  2. To continue to expand and update the website to allow greater accessibility and quality of content.

  3. Further strengthen the governance of the NTF and continue the review of policies

Public Benefit Statement

The Trustees confirm that they have complied with the duty in the Charities Act 2011 to have due regard to the Charity Commission’s general guidance on public benefit. As stated elsewhere in this report, the Trust’s charitable activity work is clear evidence of both the identifiable benefit provided and the relation of this benefit to the charity’s aims. Continuing website feedback shows that the Trust is regularly reaching people affected by tremors - both in UK and overseas, with a continued large increase in visitors to the website in recent years.

Financial Review

Our income received for 2023 reached just over £49,000. There was a total of over £115,000 in the bank at year end, which still gives us a real basis to look to future developments. With membership free, we encouraged members to voluntarily donate.

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National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2023

Our primary costs continue to be invested in fundraising and our website, with a dedicated IT consultant to continually monitor and upgrade the website. Increased activity, particularly website development and an effort to establish further support groups in the UK, resulted in further expenditure in this area.

.

Reserves Policy

The Trustees would ideally like to establish a level of reserves that would meet 12 months of basic operational costs (approximately £60k) should there be a gap in funding. At the year end the reserves held were £116,031 (previous year £146,114); this level of holding gives a sound base for considering increased research activity.

Reference and Administration details

Trustees at date of report’s approval 30th October 2024;

Chair of Board of Trustees

Kitty Reilly MSc, BSc

Trustees

Professor Leslie J Findley TD,M D, FRCP Kevin Harfoot Keith Flaxman FCCA CPFA (Treasurer) Dr Peter Bain MBBS MA MD FRCP (Consultant Neurologist)

Registered Office:

Harold Wood Polyclinic Copse Avenue Harold Wood Romford RM3 0FE

Bankers

National Westminster Bank

Independent Examiner Adrian Nunn FCCA

Charity Registration Details Name: National Tremor Foundation Charitable Trust No: 1042013

Structure, Governance & Management

Governing Document

The Trust is governed by a Declaration of Trust dated 19 October 1994 and was registered as a charity on 9 November 1994.

Recruitment and Appointment of Trustees

New trustees are recruited for the special contribution they can make to the Trust and are appointed by resolution of the Trustees.

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National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2023

Statement of Trustees Responsibilities

Charity law requires the Trustees to prepare a trustees’ annual report and financial statements for each financial year which show a true and fair view of the state of affairs of the Trust and its financial activities for that period. In preparing those financial statements, the Trustees are required to:

Select suitable accounting policies and then apply them consistently. Observe the methods and principles in the applicable Charities SORP. Make judgements and estimates that are reasonable and prudent.

State whether applicable accounting standards and statements of recommended practice have been followed, subject to any departures disclosed and explained in the financial statements.

Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the Trust will continue in operational existence.

The Trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Charities Act 2011, the applicable Charities (Accounts and Reports)

Regulations and the provisions of the constitution. They are also responsible for the maintenance and integrity of the Trust, safeguarding the assets of the Trust and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

The financial statements have been prepared in accordance with the accounting policies set out in notes to the accounts and comply with the charity’s governing document, the Charities Act 2011 and 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 Republic of Ireland (FRS 102) published on 16 July 2014.

Statement as to disclosure to the independent examiner

In so far as the Trustees are aware at the time of approving the trustees’ annual report:

There is no relevant information, being information needed by the independent examiner in connection with preparing his report, of which the independent examiner is unaware.

The Trustees, having made enquiries of fellow trustees and the independent examiner that they ought to have individually taken, have each taken all steps that they are obliged to take as a trustee in order to make themselves aware of any relevant information for the independent examination and to establish that the independent examiner is aware of that information.

Approved by the Trustees on 30st Oct 2024 and signed on their behalf by:

Chair

Kitty Reilly (MSc, BSc)

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INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES OF THE NATIONAL TREMOR FOUNDATION CHARITABLE TRUST

I report on the accounts of the National Tremor Foundation Charitable Trust for the year ended 31 December 2023, which are set out on pages 10 - 13.

Responsibilities and basis of report

As the trustee of the charity, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the Act’).

I report in respect of my examination of the charity’s accounts 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 giving me cause to believe that in any material respect: Accounting records were kept in respect of the Trust as required by section 130 of the Act. The accounts accord with those records.

The accounts 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.

Adrian Nunn FCCA

Flat 9 Millenium Court 4, College Road Liverpool L23 0YE

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National Tremor Foundation Charitable Trust Statement of Financial Activities for the Year Ended 31st December 2023

Note Unrestricted Restricted Total for Year
Funds Funds 2023 2022
£ £
 £
 £
Income
Donations 48,924 250 49,174 125,048
Grants 0 0
48,924 250 49,174 125,048
Expenditure
Fund Raising 2 15,826 15,826 22,442
Charitable Activities
Information 48,445 48,445 36,917
Research 0 0 0
Beneficiary Support 14,814 132 14,946 10,818
79,085 132 79,217 70,177
Net Movement in Funds -30,161 118 -30,043 54,781
Reconciliation of Funds 115,913 118 116,031 146,114
Balance Sheet as at Sheet as at 31st December 2023
31st December 2022 31st December 2023
£ £ £ £
Current Assets
Debtors 5 0 0
Cash at Bank 153,235 123,192
Creditors:Falling due within one year 6 -7,121 -7,161
Net Current Assets 146,114 116,031
Net Assets 146,114 116,031
Funds
Unrestricted Funds 7 130,883 100,550
Restricted Funds 8 15,231 15,481
146,114 116,031

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National Tremor Foundation Charitable Trust Notes to the Financial Statements for the Year ended 31 December 2023

1. ACCOUNTING POLICIES

Basis of preparation . The accounts (financial statements) have been prepared under the historical cost convention with items recognised at cost or transaction value unless otherwise stated in the relevant note(s) to these accounts. The financial statements have also been prepared in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) issued on 16 July 2014 (and as updated by Update Bulletin 1 issued on 2 Feb 16) and the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102) and the Charities Act 2011 and UK Generally Accepted Practice as it applies from 1 January 2015.

The accounts (financial statements) have been prepared to give a ‘true and fair’ view and have departed from the Charities (Accounts and Reports) Regulations 2008 only to the extent required to provide a ‘true and fair view’. This departure has involved following Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) issued on 16 July 2014 rather than the Accounting and Reporting by Charities: Statement of Recommended Practice effective from 1 April 2005 which has since been withdrawn.

The National Tremor Foundation (the charity) meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s).

Preparation of the accounts on a going concern basis . The trustees consider that charity can continue as a going concern for at least the next 12 months.

Income . Income is recognised when the charity has entitlement to the funds, any performance conditions attached to the item(s) of income have been met, it is probable that the income will be received and the amount can be measured reliably and is not deferred.

Interest receivable. Interest on any funds held on deposit is included when receivable and the amount can be measured reliably by the charity; this is normally upon notification of the interest paid or payable by the Bank.

Fund accounting. Unrestricted funds are available to spend on activities that further any of the purposes of charity. Restricted funds are donations which the donor, or charity when making an appeal, has specified are to be solely used for particular areas of the charity’s work.

Expenditure and irrecoverable VAT . Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required and the amount of the obligation can be measured reliably. Expenditure is classified under the following activity headings:

● Costs of raising funds cover all expenditure incurred by the charity to raise funds for its charitable purposes - including the costs of all fundraising activities, events and non-charitable trading activities, plus the associated support costs.

● Expenditure on charitable activities includes the costs of information provision and beneficiary support undertaken to further the purposes of the charity and their associated support costs.

● Other expenditure represents those items not falling into any other heading.

Irrecoverable VAT is charged as a cost against the activity for which the expenditure was incurred.

Allocation of support costs. Support costs are those functions, such as office overheads and governance, that assist the work of the charity but are not a direct cost of reported activities. These costs have been allocated between cost of raising funds and expenditure on charitable activities. The bases on which support costs have been allocated are set out in note 3.

Tangible fixed assets . Individual fixed assets costing £1,000 or more are capitalised at cost and are depreciated over an estimated useful economic life of 4 years on a straight line basis. The charity has no such eligible assets.

Stock . Stock is included at the lower of cost or net realisable value. The charity has no material stock holdings.

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National Tremor Foundation Charitable Trust

Notes to the Financial Statements for the Year ended 31 December 2023

Financial instruments . The charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value with the exception of bank loans which are subsequently measured at amortised cost using the effective interest method.

Debtors Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.

Cash at bank and in hand . Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account.

Creditors and provisions . Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.

2 EXPENDITURE
Cost of Generating Funds
Charitable Activities
Information
Research
Beneficiary Support
Total Resources Expended		 Direct
Contractor
Support
2023
2022
£
£
£
£
£
1,190
13,418
1,218
15,826
29,744
2,349
44,694
1,402
48,445
29,188
0
0
0
0
0
9,328
5,288
330
14,946
11,245
12,867
63,400
2,950
79,217
70,177

Costs have been attributed on a basis consistent with the use of resources. Where costs cannot be allocated, they are proprotioned by the estimated percentage of time spent on each activity.

3 SUPPORT COSTS
Governance
Communications
Office
Total Support		 Raising
Info
Research
Beneficiary
2023
2022
Funds
Support
£
£
£
£
£
£
438
388
0
161
987
1,196
362
473
0
79
914
1,017
418
541
0
90
1,049
1,170
1,218
1,402
0
330
2,950
3,383

4 OTHER TRANSACTION INFORMATION

The charity does not employ any staff directly but relies on two contractors for fundraising, and web site actvities. A new contractor has recently been appinted to support administration No Trustee received remuneration or other benefits in connection with Trustee duties or other services There were no related party transactions in this reporting period that require disclosure

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5 DEBTORS
Prepayments
6 CREDITORS
Trade Creditors
Accruals
Other Creditors
7 UNRESTRICTED FUNDS
General
8 RESTRICTED FUNDS
Orthostatic Tremor Group
Video Production
Yorkshire
Support Group/Helpline
Youngsters
Ultrasound Research
National Lottery
POT Group
Meeting Sponsorship
Leeds Group
Sutton and Worthing Skakers		 2023
2022
£
£
0
0
0
0
2023
2022
£
£
6,861
6,861
300
260
7,161
7,121
2023
2022
£
£
100,800
130,833
100,800
130,833
2023
2022
£
£
2,348
2,348
1,000
1,000
533
533
3,060
3,060
1,166
1,166
1,500
1,500
3,668
3,668
500
500
1,000
1,000
456
456
250
15,481
15,231

The Orthostatic Tremor funding is for the group's running costs. The video procution is for a video on undergoing tremor related surgery. The Yorkshire funding is for has a geographic restricton. The support group/helpline funding is for the expansion of these services. The Youngsters funding is for educating & assisting young people with essential tremor. The ultrasound research funding is specifically related to that area of research. The Lottery funding is for UK support group development. The Leeds and Sutton and Worthing Shakers groups funds are geographically restricted.

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