National Tremor Foundation Charitable Trust
Report & Financial Statements for the year ended 31 December 2020
Charity number: 1042013
National Tremor Foundation Charitable Trust
Contents
| Item Trustees' Annual Report (consisting of:) Objectives and Activities Achievements & Performance Communications & Fundraising Plans for Future Periods Public Benefit Financial Review Reference and Administrative Details Governance, Management and Structure Responsibilities of Trustees Independent Examiner’s Report Statement of Financial Activities Balance Sheet Notes forming part of the financial statements |
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
OBJECTIVES & ACTIVITIES
The Trust’s legal purpose (objects) are:
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To promote, centralise and co-ordinate for the benefit of the public any form of research into essential, idiopathic and hereditary tremor and to disseminate and publish the useful results of such research.
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To relieve the need of sufferers from essential, idiopathic and hereditary tremor.
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To advance the education of the public in the subject of essential, idiopathic and hereditary tremor.
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The Trust is currently able to resource these charitable activities:
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Information . Provision of knowledge to people affected by tremor or movement disorders of various parts of the body in order to help them and their families/carers manage the condition. The initial source for the Trust’s beneficiaries is the website which the Trust believes is the leading source of information on this condition for over one million sufferers in the UK. Further sources are a newsletter (available in hard and soft copy), a general telephone enquiry service and access to an advisory panel.
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Research . This is a recently new activity enabled by the build-up of reserves over recent years. Research progresses the understanding of tremors by investigating causes and potential treatments.
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Beneficiary support . This activity covers the annual conference, active support and the encouragement/subsidy of regional support groups where there are known clusters of interested beneficiaries.
ACHIEVEMENTS & PERFORMANCE
This section explains the activities for the reporting period; in a difficult economic environment the Trust has managed to keep costs to a minimum and maintain the central office support facility .
HONORARY PRESIDENT – LORD JULIAN FELLOWES
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 returnied 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.
During 2020 Lord Fellowes joined an online Zoom meeting and took part in a Q&A session hosted by NTF support group co-ordinator Jackie Farrell .
BOARD ACTIVITY
The trustees met online via Zoom in October 2020 and again in November 2020. The meetings generated an action plan which included updating our safeguarding policy, DBS Checks for all NTF personnel including support group leaders.
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
MARATHON RUNS
As a result of the cancellation of the 2020 London Marathon, the National Tremor Foundation were delighted to have 2 runners in the 2020 London Marathon virtual event in October. Despite the short notice the 2 runners raised over £2000.
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Digital report 2020
Digital overview
The NTF’s website is the main means for the charity to communicate to the public, driving in 178,733 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.
2020 was a challenging year with the corona virus outbreak which changed the way the NTF operated and saw the NTF become completely digital. The UK was in lockdown by March 2020 and the NTF launched its new website in June, which has improved features and is far more usable for users.
The new website allowed increased digital engagement during the lockdown and catered for the new virtual way of living. As we saw a shift in support groups from being face-to-face to online which have proved very popular. In addition users were able to donate more easily boosting individual fundraising.
Below is a SWOT analysis highlighting the digital opportunities and threats facing the NTF.
| Strengths Improved donations process Improved signing up for events and support events Improved Friends of signing up process Strong digital support network of potential volunteers Out performing given our size Increased internal communication and teamwork has contributed in success. |
Opportunities Market for people to use online meetups is growing and have been highly successful Increase in people using virtual challenge events (i.e. London Marathon and The Journey) which opens opportunities to access new audiences Businesses interested in events fundraising Demand for online goods such as NTF T-Shirts Demand for people to get involved in the NTF as volunteers or friends |
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| Weaknesses NTF operating beyond capacity GDPR consent to website traffic (cookie consent) reduced recorded traffic Need for more photography to show types of tremor. Need to drive to research content to website No advertising budget. |
Threats Changes in work patterns such as furlough and lockdown affecting events Economic issues facing users such as unemployment affecting donations Growth in dependence on charities for digital support due to NHS being overburdened. Potential for market saturation in digital services with an increase in competition for digital engagement from other/bigger charities. |
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
Website
The number of website users between 2016 and 2019 had doubled, but due to a change in the website design to comply with GDPR by Tribal Systems in December 2019 Google Analytics was only tracking 20% of traffic. This resulted in a major dip in recorded traffic of 58% in 2020.
However with the launch of the new website we have been able to recapture some of the data and working to optimise the new website. We are currently on track to regaining the traffic lost.
Below shows how the number of website users has increased over the last five years.
| Year | Total users | Percentage change |
| 2020 | 178,733 | -58% |
| 2019 | 427,904 | 12% |
| 2018 | 383,376 | 22% |
| 2017 | 315,043 | 74% |
| 2016 | 181,469 |
Below is a graph showing the exact time in 2019 the GDPR change was implemented and how it dramatically reduced website traffic.
Below is a graph showing when the new website was launched in 2020 and how traffic was recaptured.
Website audiences
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
From Google Analytics most users are aged 65+ (21%); most are female (57%); most live in the UK (74%); over half live in London (53%) and over half use the website using mobile (53%).
Age
65+ 21% 25-34 19% 55-64 18% 45-54 16% 35-44 15% 18-24 10%
Gender
Female 57% Male 43%
Device
mobile 53% desktop 37% tablet 10%
Country
| Country | |
|---|---|
| UnitedKingdom | 74% |
| United States | 24% |
| Australia | 3% |
City
| City | |
|---|---|
| London | 53% |
| Birmingham | 7% |
| Leeds | 6% |
| Glasgow | 6% |
| Bristol | 5% |
| Liverpool | 5% |
| Manchester | 5% |
| Dublin | 5% |
| Sheffield | 4% |
| Newcastle upon Tyne | 4% |
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.
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
Furthermore, the NTF’s Social media network has continued to grow with our established Facebook channel being popular and Twitter attracting increased interest.
Newsletter
In 2020 with the increase in digital engagement it was decided to move from producing a quarterly PDF newsletter to producing a monthly e-newsletter. By 2020 the newsletter was being distributed to 1,844 people and with an open rate of 55.1% they are out performing other charities.
Below is a bar chart showing newsletter performance.
Online Support Groups
2020 saw support groups go online using Zoom. During 2020 we ran over 40 digital events with a total number of over 700 people registering (100 different people; with 35 people signing up to an event on average).
Online donations
With the introduction of the new website 2020 has seen a significant increase in the number of donations. In 2020 the new website drove in an additional £2045 in donations compared to £1015 in 2019.
| Month | Amount |
|---|---|
| June | £187 |
| July | £338 |
| August | £386 |
| September | £251 |
| October | £193 |
| November | £378 |
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
December £312
Campaigns for 2021
Below are the awareness and fundraising campaign cycles planned for 2021.
| Campaign | Period |
| NETA month | January – March |
| Fundraiser challenges | April – June |
| The Journey summer campaign | July – August |
| Schools campaigns | July–September |
| OT month | August–September |
| Christmas | October – December |
Notes
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The website has seen continued growth due to a major overhaul in 2016 and our Digital Content 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.
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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 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.
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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 resubscribe 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).
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
RESEARCH
A grant of £11,106 was made available to Imperial College for a research study in 2016. The study was in the evaluation of the effectiveness and safety of MRI-guided focused ultrasound thalamotomy treatment at Charing Cross hospital for people with medically refractory Essential Tremor syndrome.
Essential Tremor is a shake of a part of the body that cannot be controlled. There are many causes of severe tremor – it is a syndrome rather than a specific condition. There are over one million people with Essential Tremor in Britain and around 250,000 people with the syndrome are severely disabled by their tremor. Current treatments include drug therapies, surgery and deep brain stimulation. These treatments are of limited effectiveness or cannot be used in all sufferers; some have moderate risks and side effects.
However, clinical researchers have recently developed a technique that allows MRgFUS to be used in the brain to treat Essential Tremor. There is a growing body of clinical evidence from around the world that this procedure is safe and effective, and it has been shown recently to have very successful outcomes in the treatment of Essential Tremor, with many fewer risks than deep brain stimulation and at a substantially decreased cost per patient treated.
The MRI-guided focused ultrasound machinery at St Marys hospital in Paddington (as shown below) is the only one in the UK. Dundee University are campaigning to get a similar machine installed at Ninewells hospital in Scotland & we were delighted to gain a £40K grant towards this campaign in July 2018 followed by a further £15K grant in December 2019. Through the persistence of the NTF Scottish tremor support group, the matter of MR guided focussed ultrasound treatment of essential tremor was debated in the Scottish parliament and the subsequent campaign was launched.
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Current treatments for essential tremor such as drug therapies, surgery and a technique known as deep brain stimulation are often ineffective, and some carry significant risks and side effects.
But the new procedure – MRI-guided focused ultrasound – can be carried out without the need for invasive surgery. It involves using a powerful MRI machine to focus ultrasound waves on a specific area of brain tissue. At that point, molecules are vibrated extremely quickly, which creates intense heat to destroy only the targeted tissue and break the abnormal electrical circuits causing the tremor.
The first UK clinical trial of the treatment took place at St Mary’s Hospital in 2016, using the £1.1 million MRI machine funded by Imperial Health Charity. During the trial, the procedure was used to treat 13 patients. All experienced significant improvements in the severity of their tremor.
Having now been approved by NICE ( The National Institute for Health & Care excellence ), a policy working group was set up to sell the procedure to NHS England as a treatment that is sufficiently needed in the community to be funded by the NHS. This step is something in which the NTF has already got involved with and have written to NHS England & met with MP’s at the houses of parliament to put the case forward for this treatment. In March 2019, the NTF were invited by NHS England onto a policy working group for Focussed Ultrasound treatment of essential tremor. However, a final decision on the outcome of these discussions were delayed in 2020 due to the Covid-19 pandemic
The two year post MR-guided focused ultrasound for essential tremor results from Imperial College NHS Healthcare show that the treated arm essential tremor remains well
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
suppressed, with no or minimal return of tremor and positive effects on the patients’ quality of life. Furthermore, using a novel two lesion approach in which small burns are made into adjacent areas of the brain (the anterior part of the Ventralis Intermedius nucleus and the Zona incerta) the incidence of persistent sensory adverse effects, typically numbness in the fingers or lips, was reduced to zero. This area of functional surgery continues to advance with the first staged bilateral MRgFUS treatment showing excellent results that are stable at 12 months post MRgFUS.
A drop in event to arrange awareness of MRI guided focussed ultrasound was arranged in October 2019 at the houses of parliament and was attended by many MP’s, Lord Julian Fellowes & representatives from the National Tremor Foundation.
Research Update 2021
Unfortunately, the covid pandemic has stopped any MR-guided focused ultrasound treatment of tremor for the first lockdown in March 2020
However, the very positive news that NHS England would fund MRgFUS treatment of essential tremor with effect from April 2021 was received, so that we should be able to start treating patients at Imperial College NHS Trust once the pandemic restrictions are lifted and routine treatments can restart. During the 'delay in initiating treatment resulting from NHS England's protracted process and the pandemic a waiting list of over 150 patients with essential tremor has developed. Even so hopefully treatment for these patients with MRgFUS will begin in the later part of 2021.
We treated our first patient with essential tremor using staged bilateral MRgFUS in January 2020, successfully in the context of a clinical trial. the patient had one arm treated and then the other about a year later. We hope to be able to resume this trial soon and then be able to report on the safety of doing staged bilateral MRgFUS in 2022.
ESSENTIAL TREMOR IN CHILDREN
As Children’s Liaison Officer, Kitty Reilly has had many email contacts from parent and carers across the country who also have children having tests for or being diagnosed with ET, who need some support and advice. Given ET is the most common neurological disorder in children, our work in the NTF needs to reflect this.
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.
Through Kitty’s work she has noticed one of the primary difficulties for children with ET is school. Raising awareness in school is key. Whilst treatment for ET is limited we need to be able to support children through school by providing the schools with knowledge and recommendations for equipment to ensure children are not penalised in their education simply because they are not able to write at an accepted standard. As well as educating teachers on the other difficulties associated with ET in children (i.e. fatigue, dressing and undressing for PE, eating, drinking etc), Kitty has started this campaign in her son’s school. She would like to see this being escalated to the Department of Education to ensure children with ET, whose writing ability is compromised etc, are not held back from achieving.
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
BENEFICIARY SUPPORT GROUPS
The number of support groups remained constant in 2020 as a result of the Covid-19 pandemic. In the absence of support group meetings held locally, the NTF hosted weekly online meetings via Zoom , which allowed people to chat & interact in a friendly, informal environment.
Support Group Co-Ordinator
The start of 2020 looked set to be a promising year for new groups.
January 18th – Two new groups were launched
Worthing Shakers – led by Jackie Farrell - Launched by Mayor of Worthing, Cllr Hazel Thorpe. BBC South News attended and made a short documentary which went out the following day on 6pm and 10pm news across the South.
Central Scotland led by Scott Pender
Preparations were also in place to launch two more new groups in Canterbury & Chelmsford in April 2020. Sadly due to Covid restrictions these did not materialise, but we are hopeful of future activity in these areas.
Existing groups in Leeds, Sheffield, Salisbury, North West and Sutton groups continued to be active up until March.
March is National Essential Tremor Awareness Month (NETA) 2020 was set to be the biggest year yet with three ET Awareness Days planned.
Two local ET awareness days took place (prior to lockdown).
March 7th - Worthing – attended by Worthing Mayor Cllr Hazel Thorpe and Worthing Town Crier Cllr Bob Smytherman
March 14th - Sutton, Greater London
The main NTF Awareness Day 2020 was planned to take place in Leeds, 28th March. Dr Sarah Jarvis was to be facilitator and actor Rob Mallard was due to attend. But by 26th March complete lockdown came into force and no meetups were permitted, which meant the event had to be postponed.
The Journey of a thousand miles
At the time, lockdown restrictions made it look unlikely face to face groups would take place for a few months, so NTF looked at alternative ways to support the tremor community. One way was to use Zoom for a weekly online group which launched March 28th. We are pleased to say, it proved popular and the “Journey of a Thousand Miles” virtual awareness campaign was launched online July 4th by NTF Honorary President Lord Julian Fellows.
The Journey was based on the Lao Tzu quote "A journey of thousand miles begins with a single step". The aim was to use "The Journey" as a vehicle to give people the confidence to talk about their tremor disorder. Also to raise awareness of essential tremor and orthostatic tremor in a collective way. One of the highlights of The Journey was when Corrie actor Rob Mallard joined us online and “The Journey” completed September 2nd.
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
By September, Covid restrictions still meant no face to face groups and not looking likely to happen well into 2021. At this point we looked into supporting tremor folk online up to Christmas with a new format. There would now be a monthly Saturday group with additional weekly Wednesday lunchtime popin sessions. Saturday’s topics would vary with, social events, quizzes, speakers or just general chat.
An added bonus was a monthly activity challenge #ntfchallenges.
How are NTF challenges different to other NTF events? These are not online Zoom events but instead a way to encourage people to get active, especially over the winter months whilst having fun.
2020 culminated with a Christmas Party 23rd December and fun and games were had by all.
Primary Orthostatic group (POT)
The Primary Orthostatic group continues to grow its membership and held online meetings in 2020, due to the Covid pandemic.
Many were happy to meet with friends, those who were there for first time received a warm welcome and realised they were not alone in coping with this rare debilitating condition. All members felt it was important to raise the awareness of this rare condition, which is still unknown to many.
The closed facebook page provides a great medium for social interaction and discussion. Membership to the page continues to grow.
Annual Meeting
Due to Covid restrictions, the National Tremor Foundation was unable to hold its very popular annual meeting in 2020. As soon as it is safe to do so we look forward to seeing our friends & supporters at the next meeting.
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. Several branches of Rotary and Probus Clubs have added to income as well as direct donations from the public via the website. A number of donations were received from funeral directors where relatives of deceased ET patients requested donations in lieu of flowers. General fundraising produced approximately £93,000 , and a legacy of £24,900 was also received.
PLANS FOR FUTURE PERIOD
The Trust’s main priority in 2020 is to further encourage & develop its support group network in the UK.
With new rules & guidelines in place and the willingness of younger people to run a support group, we hope to attract funding allowing us to gain increased coverage of support groups throughout the UK.
We will continue to develop the website further with the aid of our dedicated IT specialist, with particular emphasis given to the support group pages, their forthcoming events & a
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
gallery of events & meetings already held. The E:Newsletter re-introduced in December 2017 which was initially produced at regular quarterly intervals, were beginning to be produced at regular monthly intervals from May 2020.
In 2020 the National Tremor Foundation continued to be involved in a policy working group with NHS England with the aim of getting focussed ultrasound recognised as a treatment for unilateral essential tremor. In 2020 it was agreed by NHS England that this treatment would be available on the NHS in Englandfrom April 2021
It is our aim to strengthen links with Insightec to raise awareness of essential tremor and getting focussed ultrasound recognised as a treatment for essential tremor. An awareness day was arranged in Leeds in March 2020 to show how this partnership has been used to good effect. However, the Covid-19 pandemic meant that this event and many more that were scheduled had to be postponed until further notice. The pandemic resulted in the NTF looking at other methods of supporting people and online meetings via Zoom became increasingly popular in 2020, with weekly meetings arranged and well attended.
Internationally, we hope to strengthen our ties & interaction with the IETF (International Essential Tremor Foundation) in the USA along with making increased contact with our European counterparts and their organisations to form a stronger partnership allowing us to raise awareness further as a bigger community.
Our ultimate objective is to provide some funding for research into basic mechanisms and therapies for tremors of all types, particularly those in the Essential Tremor groups, including primary orthostatic tremor which is generally poorly supported from other funding bodies. Such activities are dependent on continued funding availability, which is secondarily dependent on the economic climate.
Access to our all parts of our website, the information within it & our helpline will continue to be free to every individual – the National Tremor Foundation wants everyone to be able to view & access all the comprehensive medical information held on its website & be able to contact our office for expert & professional advice.
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. In early 2019 the emphasis to expand its support group network continued with lottery grant funding driving the initiative further.
FINANCIAL REVIEW
Our income received for 2020 reached £109,628 (a significant increase over 2019) . There was a total of £116,644 in the bank at year end. 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.
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
It is anticipated that the continued increase in the number of support groups in 2019 will result in increased expenditure in this area. It is hoped The National Lottery grant received for support groups will allow the growth in this area with the NTF also assisting financially.
RESERVES POLICY
The Trustees would ideally like to establish a level of reserves that would meet 12 months of operational costs (approximately £50k) should there be a gap in funding. At the year end the reserves held were £ 69,304 (previous year £92,345); this level of holding gives a sound base for considering increased research activity.
REFERENCE AND ADMINISTRATIVE DETAILS
Trustees
- at date of report’s approval: 20[th] October 2021 Kevin Harfoot Chairman Professor Leslie J Findley TD,MD, FRCP (Consultant Neurologist ) Keith Flaxman Treasurer Dr Peter Bain MBBS MA MD FRCP (Consultant Neurologist) Kitty Reilly
John Kidney resigned as a trustee on 19 November 2019
Registered Office Harold Wood Polyclinic St Clements 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.
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:
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National Tremor Foundation Charitable Trust
Trustees’ Annual Report for the Year Ended 31 December 2020
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 20[th] Oct 2020 and signed on their behalf by:
Kevin Harfoot Chairman
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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 2020, which are set out on pages 15 - 18.
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
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National Tremor Foundation Charitable Trust Statement of Financial Activities for the Year Ended 31st December 2020
| Note | Unrestricted | Restricted | Total for Year | Total for Year | |
|---|---|---|---|---|---|
| Funds | Funds | 2020 | 2019 | ||
| £ | £ | £ | £ | ||
| Income | |||||
| Donations | 108,715 | 913 | 109,628 | 19,226 | |
| Grants | 0 | 42,500 | |||
| 108,715 | 913 | 109,628 | 61,726 | ||
| Expenditure | |||||
| Fund Raising | 2 | 24,204 | 24,204 | 22,692 | |
| Charitable Activities | |||||
| Information | 27,789 | 27,789 | 32,165 | ||
| Research | 0 | 0 | 15,000 | ||
| Beneficiary Support | 9,157 | 0 | 9,157 | 11,994 | |
| 61,150 | 0 | 61,150 | 81,851 | ||
| Net Movement in Funds | 47,565 | 913 | 48,478 | -20,126 | |
| Reconciliation of Funds | 94292 | 15231 | 109,523 | 61033 | |
| Balance | Sheet | as at 31st December 2020 | |||
| 31st December 2020 | 31st December 2019 | ||||
| Current Assets | |||||
| Debtors | 5 | 0 | 0 | ||
| Cash at Bank | 116644 | 69301 | |||
| Creditors:Amounts Falling due within one year | 6 | -7121 | -8271 | ||
| Net Current Assets | 109523 | 61030 | |||
| Net Assets | 109523 | 61030 | |||
| Funds | |||||
| Unrestricted Funds | 7 | 94292 | 46712 | ||
| Restricted Funds | 8 | 15231 | 14318 | ||
| 109523 | 61030 |
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National Tremor Foundation Charitable Trust
Notes to the Financial Statements for the Year ended 31 December 2020
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 2020
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 2020 2019 £ £ £ £ £ 2,283 15,406 6,515 24,204 23,014 1,445 23,942 2,402 27,789 34,398 0 0 0 0 15,600 7,168 1,283 706 9,157 8,839 |
|---|---|
| 10,896 40,631 9,623 61,150 81,851 |
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 2020 2019 Funds Support £ £ £ £ £ £ 1,677 615 100 514 2,906 3,890 1,373 749 125 250 2,497 3,342 1,576 860 143 286 2,865 3,836 |
|---|---|
| 4,626 2,224 368 1,050 8,268 11,068 |
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
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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 |
2020 2019 £ £ 0 0 |
|---|---|
| 0 0 |
|
| 2020 2019 £ £ 6,861 8,141 260 130 |
|
| 7,121 8,271 |
|
| 2020 2019 £ £ 94,292 65,649 |
|
| 94,292 65,649 |
|
| 2020 2019 £ £ 2,348 2,227 1,000 1,000 533 533 3,060 2,766 1,166 1,166 1,500 1,000 3,668 3,668 500 500 1,000 1,000 456 456 |
|
| 15,231 14,318 |
The Orthostatic Tremor funding is for the group's running costs. The video production is for a video on undergoing tremor related surgery. The Yorkshire funding is for has a geographic restriction. 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.
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