OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2022-12-31-accounts

National Tremor Foundation Charitable Trust

Report & Financial Statements for the year ended 31 December 2022 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 6
Essential Tremor in Children and Young People 6
Public Benefit Statement 7
Financial Review 7
Reference and Administrative Details 7
Governance, Management and Structure 8
Responsibilities of Trustees 8
Independent Examiner’s Report 10
Statement of Financial Activities 11
Balance Sheet 11
Notes forming part of the financial statements 12

National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2022

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; in a difficult economic environment the charity has managed to keep 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.

1

National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2022

Board Activity

Despite the ongoing aftermath of Covid, the NTF was able to raise significant funds and continue its work to support people with essential tremor. Our support groups had continued to meet during 2022, albeit on a slightly reduced number of occasions due to the ongoing fears around Covid.

The Board of Trustees met in April, July, September and November during 2022, these meetings supported the general business and the Trustees began a review of its management arrangements and policies. In November 2022 the Board of Trustees unanimously agreed to appoint a new chair, one of our existing trustees Kitty Reilly to act in a permanent capacity and move the NTF forwards, as temporary arrangements had previously been in place due to the then Chair no longer being able to continue in the capacity appointed. A programme of meetings were arranged for 2023 to discuss the strengths and weaknesses of the NTF and what we felt needed to be our priorities for the forth coming three to four years.

Despite the ongoing Covid issues, we decided to hold an annual open day in Liverpool in October 2022. We were delighted to be joined by leading experts from across the neurology. The ability to meet face-to-face - at the iconic Liver building in Liverpool – for the first time in over two years made the event all the more valuable.

Huge credit should be given to Support Groups Co-ordinator Jackie Farrell, who worked tirelessly with James Blann of Insightec, in the planning and preparation of this first in-person event post Covid. It was all the more frustrating therefore that Jackie was unable to attend herself, due to herself succumbing to Covid.

Our esteemed panel of speakers, including Professor Leslie Findley (retired Senior neurologist, Queen's Hospital, Essex, and Professor of Health Sciences, London University South Bank), Dr Jay Panicker (Clinical Director for Neurology, The Walton Centre, Liverpool) and Mr Jibril Farah (Consultant Neurosurgeon and clinical lead of the Functional and Stereotactic Neurosurgical Service, the Walton Centre, Liverpool) offered attendees some valuable insights in to the very latest developments in patient experience, treatment options and trends in the neurology space.

The NTF Open Day aimed to raise awareness of the organisation and essential tremor: ‘The National Tremor Foundation, we urge you to advertise it, and talk about it and show your tremors to everyone, because unless we raise awareness we will be back in 1992 when this organisation was founded. ’ - Professor Leslie Findley

This year we were also delighted to be joined by Rob Mallard, a British actor best known for his role in iconic soap opera Coronation Street. Rob has been vocal about his experience with Essential Tremor on national TV such as The Morning Show and chatted openly about his experiences of living with the condition.

‘More often than not, younger people who would just come up to me and put their hand in my face and go look at my hand shake – like a secret handshake, you knew we’re in…it’s weird to think I’ve had influence on peoples’ lives but if it has a positive one I’m more than happy to keep talking about [essential tremor] ’ – Rob Mallard

In total we had 150 attendees, from patients to HCPs. All attendees had the opportunity to attend a networking session where they could speak directly with healthcare leaders, industry representatives and holistic care providers. This was in addition to a lively Q&A session with our panel of experts, where questions around essential tremor were answered and debated.

2

National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2022

Thank you to our exhibitors: Insightec, Boston Scientific, Warrington Disability Partnership, and neuro-physiotherapist Karen Hull.

Communication and Digital Report

Digital overview

The NTF’s website is the main means for the charity to communicate to the public. In 2022 it drove 250,218 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.

In 2022 the NTF changed their logo and this involved making major changes to the look of marketing promotion. The new logo represents concentric circles found in vibrations and represents a friendly yet professional organisation.

Below is a SWOT analysis highlighting the digital opportunities and threats.

Strengths (internal)
1.Improved donations process
2.Improved signing up for events and support
events
3.Strong digital support network of potential
volunteers
4.Increased internal communication and teamwork
has contributed to success.
5.Surveys are helping us make better informed
decisions.		 Opportunities (external)
1.Market for people to use online meetups is
growing and have been highly successful
2.Increased in people taking part in challenge
events
3.Demand for online goods
4.Demand for people to get involved in the NTF as
volunteers.
5.Increased demand for partnerships with industry
Weaknesses (internal)
1.NTF operating beyond capacity
2.Audience data is limited and we need to
understand our audiences to conduct marketing
more effectively.
3.Need to improve the internal communication
system.
4.Need centralised filing system and contacts need
to be shared.
5.Brand is not well known.
6.Need for formal representation in Scotland and
Ireland.
7.Still operating reactively not proactively due to
limited capacity.		 Threats (external)
1.Rise in cost of living
2.Reduction in individual and fundraiser donations
3.Economic issues facing users such as
unemployment affecting donations
4.Growth in dependence on charities for digital
support due to NHS being overburdened
5.Increase in competition for digital engagement
from other charities.

Target stakeholders

3

National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2022

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

Website

In 2022 growth continued at a steady rate of 3.4%. In March 2022 due to PR activity with Rob Mallard appearing on television to talk about ET and the NT,F there was a spike in traffic as shown below.

Below shows how the number of website users has increased.

Year Total users Percentage change
2022 250,218 3.4%
2021 241,755 30%
2020 178,733

Website audiences

Most of our audience are female (57%) between the ages of 25-34 and 65+ (19% for both age groups) and are in the UK . The majority of our traffic comes from searching for pages/content (organic 58%); Direct links (23%); NHS website (5%) and 2% from Social Media.

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.

4

National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2022

Newsletter

In 2022 the e-newsletter is being distributed to over 3000 people a month with an average open rate of 49% which is higher than other charities.

Below is a bar chart showing newsletter performance.

Campaigns in 2022

Below are the awareness and fundraising campaign cycles for 2022

Campaign Period
NETA month January – March
Fundraiser challenges April – June
Summer Tea Party July – August
OT month August–September
Christmas October – December

Online donations

In 2022 through the NTF website, the NTF were able to raise £2740 excluding Gift Aid. This is a decrease from 2021 during the COVID pandemic which saw £5073 people donate.

Online support group events

In 2022 the NTF held 22 online support group events which attracted 858 people.

Notes

  1. The website has seen continued growth due to a major overhaul in 2016 and our Digital Consultant continuing to develop the website further, with regular updates and continual links to our social media channels, Facebook and Instagram, optimisation of keywords and online advertising to increase its ranking on Google. This growth has occurred with increased community activity such as support groups and events.

  2. In 2018 the website home page was redesigned to reflect the current needs of the website. With over 50% of users accessing the website using mobile the new design is “mobile first”. The new homepage aims to promote Support Groups, events, photographs and fundraising. The website also has given

5

National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2022

Orthostatic Tremor a new separate section of its own. In addition, Twitter feed was added to the home page and a Donation button was added to the top of the website to increase funds raised.

  1. 2018 saw the introduction of GDPR. GDPR is the law on data protection and privacy for all individuals. This has meant that major changes were made to how the NTF handles data. All people with data held by the NTF had to re-consent to the NTF using their data. A number of emails were sent out to all members asking them to re-subscribe to our database. In addition, changes were made to the website so that people had to consent to the use of their information when signing up to forms; additional security settings were added; and a secure domain certificate was added (https).

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, who appeared at the Liverpool meeting mentioned above, was diagnosed with Essential Tremor in his teenage years and will hopefully be a great advocate for the NTF in raising awareness of the condition.

Annual Meeting

The annual in Liverpool was a great success, details are mentioned above.

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 2023

  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

6

National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2022

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 2022 reached over £125,000 during a difficult year. There was a total of over £150,000 in the bank at year end, giving us a real basis to look to future developments. With membership free, we encouraged members to voluntarily donate.

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 £ £146,114 (previous year £91,242); this level of holding gives a sound base for considering increased research activity.

Reference and Administration details

Trustees at date of report’s approval 31[st] October 2023;

Chair of Board of Trustees

Kitty Reilly MSc, BSc

Trustees

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

Registered Office:

Harold Wood Polyclinic St Clements Avenue Harold Wood Romford RM3 0FE

Bankers

National Westminster Bank

Independent Examiner

7

National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2022

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.

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 31st Oct 2023 and signed on their behalf by:

8

National Tremor Foundation Charitable Trust

Trustees’ Annual Report for the Year Ended 31 December 2022

Chair

Kitty Reilly (MSc, BSc)

9

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 2022, which are set out on pages 11 - 15.

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 not kept in respect of the Trust as required by section 130 of the Act. The accounts do not accord with those records.

The accounts do not 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 59 Gainsford Gardens Clacton-On-Sea Essex CO15 5BJ

10

National Tremor Foundation Charitable Trust Statement of Financial Activities for the Year Ended 31st December 2022

Note Unrestricted
Restricted		 Unrestricted
Restricted		 Unrestricted
Restricted		 Total for Year Total for Year
Funds
Funds		 2022 2021
£ £ £ £
Income
Donations 125,048 0 125,048 35,452
Grants 0 0
125,048 0 125,048 35,452
Expenditure
Fund Raising 2 22,442 22,442 15,003
Charitable Activities
Information 36,917 36,917 32,026
Research 0 0 0
Beneficiary Support 10,818 0 10,818 6,704
70,177 0 70,177 53,733
Net Movement in Funds 54,871 0 54,871 -18,280
Reconciliation of Funds 146,114 0 146,114 91,242
Balance Sheet as at 31st December 2022
31st December 2021 31st December 2022
Current Assets
Debtors 5 0 0
Cash at Bank 98,363 153,235
Creditors:Falling due within one year 6 -7,121 -7,121
Net Current Assets 91,242 146,114
Net Assets 91,242 146,114
Funds
Unrestricted Funds 7 76,011 130,883
Restricted Funds 8 15,231 15,231
91,242 146,114

11

National Tremor Foundation Charitable Trust

Notes to the Financial Statements for the Year ended 31 December 2022

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.

12

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

National Tremor Foundation Charitable Trust

Notes to the Financial Statements for the Year ended 31 December 2022

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.

13

2 EXPENDITURE
Cost of Generating Funds
Charitable Activities
Information
Research
Beneficiary Support
Total Resources Expended		 Direct
Contractor
Support
2022
2021
£
£
£
£
£
2,236
25,218
2,290
29,744
19,795
1,415
26,928
845
29,188
25,626
0
0
0
0
0
7,018
3,979
248
11,245
8,311
10,669
56,125
3,383
70,177
53,732

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
2022
2021
Funds
Support
£
£
£
£
£
£
704
268
0
224
1,196
1,373
581
327
0
109
1,017
1,187
671
374
0
125
1,170
1,365
1,956
969
0
458
3,383
3,925

4 OTHER TRANSACTION INFORMATION

The charity does not employ any staff directly but relies on two contractors for fundraising, administration and web site activities

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

14

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		 2022
2021
£
£
0
0
0
0
2022
2021
£
£
6,861
6,861
260
260
7,121
7,121
2022
2021
£
£
130,883
94,292
130,883
94,292
2022
2021
£
£
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
15,231
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 group fund is geographically restricted.

15