`Charity registration number: 266071 

## National Association for the Relief of Pagets Disease 

Annual Report and Financial Statements for the Year Ended 31 December 2021 



## **National Association for the Relief of Pagets Disease** 

## **Contents** 

|**Contents**||
|---|---|
|Reference and Administrative Details|1|
|Trustees' Report|2 to 8|
|Statement of Trustees' Responsibilities|9|
|Independent Examiner's Report|10|
|Statement of Financial Activities|11|
|Balance Sheet|12|
|Notes to the Financial Statements|13 to 24|





**National Association for the Relief of Pagets Disease Reference and Administrative Details** 

|**Other Name Used**|The Paget's Association|
|---|---|
|**Charity Registration Number**|266071|
|**Principal Office**|Suite 5|
||Moorfield House|
||Moorside Road|
||Swinton|
||Manchester|
|**Patrons**|Sir Henry Paget|
||Mr Ricardo Patrick|
||The Lord Stamp MD FRCP|
|**Honorary Patron**|Mrs Joyce Cupitt|
|**Trustees**|Professor Stuart Ralston, Chair|
||Dr Stephen Tuck, Vice Chair, resigned 8 October 2021|
||Professor Robert Layfield, Vice Chair|
||Professor Graham Russell, Honorary President|
||Mr Michael Patnick|
||Dr Sheelagh Farrow|
||Ms Amanda Sherwood|
||Mr Alan Janes|
||Ms Kely Burman|
||Mr Niall Middleton, resigned 8 October 2021|
||Professor Jeremy Mark Wilkinson, appointed 8 October 2021|
||Dr Catherine Nairn, appointed 8 October 2021|
||Mr Michael Missett, resigned 8 October 2021|
||Dr Anna Daroszewska, resigned 8 October 2021|
|**Independent Examiner**|Sue Hutchinson FCCA|
||Beever and Struthers|
||St. George's House|
||215 - 219 Chester Road|
||Manchester|
||M15 4JE|
|**Bankers**<br>Barclays Bank plc||
|1 Market Street||
|Bolton||
|BL1 3NJ||
|**Investment Managers**|Tilney|
||Royal Liver Building|
||Pier Head|
||Liverpool|
||L3 1NY|



Page 1 



## **National Association for the Relief of Pagets Disease Trustees' Report** 

The trustees present the annual report together with the financial statements of the charity for the year ended 31 December 2021. 

## **Objectives and activities** 

## _**Objects and aims**_ 

The Paget's Association is the only charity in the UK whose remit is solely concerned with people with Paget’s Disease of Bone. The broad aims of the Association are to provide information and support for people with this condition and their families; to raise awareness about the condition amongst the general public and within the medical and allied health professions; and to support and fund research projects in the field of Paget's Disease of Bone. 

## _**Public benefit**_ 

The Paget’s Association is an inclusive organisation which promotes the well-being of all people diagnosed with Paget's disease of bone, their families and carers. We provide information to people affected by the condition and also provide information and advice to healthcare professionals responsible for delivering their care. There is no charge for this service. We work to end the isolation of people with Paget's disease and encourage them to take control of their condition and treatment. We offer educational and social opportunities via our Paget's Information meetings which are free of charge and open to anyone with an interest in Paget’s disease. 

The trustees confirm that they have complied with the requirements of section 17 of the Charities Act 2011 to have due regard to the public benefit guidance published by the Charity Commission for England and Wales. 

## _**Membership**_ 

Membership of the Association is open to anyone who has an interest in Paget’s disease. This includes those affected, their relatives and carers, as well as scientists and healthcare professionals. The current subscription for membership of the Association to receive the quarterly newsletter is £15 per annum for UK members and £20 for overseas members. Professional membership is free of charge. Information Meetings are generally free of charge to encourage maximum participation but occasionally a small fee may be charged to help defray costs of catering and venue hire. 

Page 2 



**National Association for the Relief of Pagets Disease Trustees' Report** 

## **Achievements and performance** 

The achievements and performance during 2021 were broadly in line with the plans for future periods outlined in the annual report for the year ending 31[st] December 2020 as discussed below. 

Soon after the start of 2021, the Association hosted the third annual Paget’s Awareness Day on 11th January. Once again this took the form of a series of video interviews with several experts and a patient. These were available to view online using the Association’s website and YouTube channel. The series focused on the use of bisphosphonates for the treatment of Paget’s disease with presentations on their initial development, their mode of action and their use in patients with Paget’s disease. 

Information events and support groups were reinstated during 2021. A face-to-face event was held in York in July 2021 and the 2021 AGM was held in combination with an information event in Southampton in October 2021. 

## _**Support**_ 

The Association continued to support people affected by Paget’s disease in 2021 through the Paget’s Nurse Telephone and email Helpline. In addition, regular contact was made from the Specialist Paget’s Nurse to those normally attending face-to-face support groups and they were also encouraged to contact each other. Additional support was offered to those known to be experiencing difficulties. Further digital initiatives which were put in place as the result of the pandemic were as follows: 

- New Virtual Paget’s Support Groups were set up to hold regular online meetings for those affected by Paget’s disease and their families. 

- Increased use was made of social media to support those with Paget’s disease and raise awareness of the condition. 

- The Facebook Support Group, which was set up during 2020, has continued to grow in popularity throughout 2021 and now has 585 members from the UK and other countries across the world including Australia, New Zealand, USA and Canada. 

- Support to patients with the disease was also continued to be offered via the Paget’s Support Network. 

- • In addition to our regular members’ email, a ‘Paget’s Friends’ mailing list was offered and set up for non-members to keep in touch with our news and events. 

- A Paget’s question and answer session was held online, using Zoom, as part of the Paget’s Awareness Day events on 11th January 2021. A similar event answered questions regarding COVID-19 and Paget’s disease. 

- The Association’s website and database continued to be developed, to offer more information and online membership options. 

- Free Support Gift Bags were introduced for those who are newly diagnosed and contain items to help with pain and support those having treatment. 

## _**Publications**_ 

Information booklets for those affected by Paget’s disease were updated by Diana Wilkinson, the Paget’s Specialist Nurse, with input from clinicians and patients serving on the Board of Trustees. This included revision of the booklet ‘Paget’s Disease - Investigations Explained’, a new Paget’s Jargon Buster, and the continuation of the Association’s quarterly magazine, Paget’s News. In addition, our booklet for health professionals was circulated as part of the Awareness Day GP Campaign. 

Page 3 



**National Association for the Relief of Pagets Disease Trustees' Report** 

## **Raising Awareness** 

A series of videos were released for Paget’s Awareness Day focusing on developments in the treatment of Paget’s disease, The awareness day was also used to promote the Association’s support services via social media, to interact with supporters, and to begin a campaign to raise awareness amongst GPs by offering practices a professional information booklet, publishing articles in journals aimed at GPs, and through digital advertising on websites used by GPs. During the Autumn of 2021, preparations began for the Awareness Day in 2022 which will focus on a global perspective on Paget’s disease. With the assistance of an external provider, we were successful in obtaining a Google Grant to give our website more prominence and increase awareness of our information, research and support services. In late 2021, an external social media provider was employed to co-ordinate and enhance social media channels. In the annual report for the year ending 31[st] December 2020 the board of trustees felt that a useful strategy to raise awareness amongst health care professionals would be to developing a medical education programme using the Association’s website. However, during 2021 it became apparent that the Association’s website would need essential maintenance and upgrading and it was felt that the medical education programme should be deferred for the time being until this work had bee completed. 

## _**Centres of Excellence**_ 

The Paget’s Association Centres of Excellence (PACE) continue to operate to promote awareness, high standards of clinical care and research into Paget’s Disease. The Association currently supports twelve Centres of Excellence across the UK. The Trustees reviewed activities carried out by the PACE centres during 2021 and were generally pleased with the PACE programme but noted that communication with some centres was suboptimal. The trustees were undecided as to whether the PACE initiative should be extended or otherwise altered but felt that this should be reviewed in future years. 

## **RESEARCH** 

The Association has a long history of funding high quality research projects that advance understanding of the causes of Paget's disease and/or provide new insights into management of the disease and the prevention of complications. The Association invites applications for grant funding through advertisements on its website. Each application is assessed by the Trustees, an external Research Grants Committee and external peer reviewers, and graded against the specific criteria and research objectives set out by the Research sub-committee. Some Trustees undertake research, related to their employment, within research facilities and/or hospitals and may receive funding from the Association, via their institution, to carry out research. Any decisions made with regard to funding for these applications are made independently from the Trustee who is not permitted to take any part in the decision-making process. The same principles apply to funding of grants involving scientists from the same institution as a Trustee. 

An important part of this process is the role of lay people in the decision making, regarding the relevance of the applications to the Association's objectives. Each successful applicant is required to provide regular reports on the progress of the project for the Research sub-committee and also for the Association’s members via the quarterly Newsletter. 

## _**Procedures for awarding research grants**_ 

The Research sub-committee (RSC) is responsible for overall strategy with regard to setting an annual budget for research and upon deciding upon the range and types of awards that the Association should support. However, decisions on which grants should be awarded has been delegated to a research grants committee (RGC) which was established in 2019. In order to minimise the risk of conflicts of interest, Trustees made a decision that the RCG should be Chaired by an individual without a specific interest in Paget’s disease and also has a membership of the RGC should comprise scientists and clinicians who do not have a direct research interest in Paget’s disease themselves. At the present time, the RCG is chaired by Professor Tim Arnett, from University College London. Prof Emma Duncan (King’s College London) and Dr Celia Gregson (Bristol University) as professional members and Mrs Elizabeth Green as a lay member. All grant applications are sent for external peer review and funding decisions made on the basis of the reviewer’s reports and the RGCs assessment of these report. The RCG then makes a recommendation to the RSC about which grants should be funded and the RSC recommendations are ratified by the board. Through these mechanisms, the Association has a robust and transparent system for awarding grants. 

The trustees of the Association set aside a budget of up to £168,000 during 2021 for new grant funding to be awarded during 2022 and this is expected to generate expenditure during 2023 to 2024. 

Page 4 



## **National Association for the Relief of Pagets Disease Trustees' Report** 

## **Financial review** 

## _**Policy on reserves**_ 

In determining an appropriate level of reserves, the Board has taken into account both operating costs which are relatively stable and the wide variation in annual income which is heavily reliant on legacies. The Board has agreed that reserves should be in place to cover at least 24 months operating expenditure. The annual operating expenditure in 2021 was estimated to be in the region of £410,000 which comprised £136,023 for wages and operating costs and £134,296 for activities related to raising awareness of Paget’s disease. A sum of £168,000 was allocated to the Research Committee for grant funding. Investments were valued at £755,930 at the 31st December 2021 taking into consideration other assets and liabilities, the total available funds at the end of 2021 were £1,030,535 which is sufficient to cover twenty-four months expenditure. The board noted that during 2021 only one endowment of £16,000 had been received but that an additional endowment of £154,474 had been received early in 2022 and this had been included in the financial summary. 

The balance of funds held will be invested to generate income for future research grants, to cover operating costs and to mitigate the uncertainties of reliance on voluntary income and legacies. 

, At the year end the charity held total reserves of £1,030,535 (2020: £1,022,600) of which £8,139 (2020: £10,957) are held in fixed assets and £Nil (2020: £Nil) held in restricted funds. This leaves £1,022,396 (2020: £1,011,643) in free reserves. 

## _**Investment policy and objectives**_ 

Tilney Bestinvest in Liverpool manages long-term investments on behalf of the Trustees. The purpose of the investments is both to provide an income return and capital appreciation. The Association's investment policy involves balanced portfolios incorporating a medium to low level of risk. The Trustees have not issued specific instructions to the investment managers, but the financial reports are reviewed at each board meeting to ensure that the investments are performing favourably in terms of the UK Consumer Prices Index (CPI) and the ARC sterling balanced asset PCI  The Trustees have an ethical policy not to invest in certain types of companies in view of the nature of the Charity's activities. 

## **Plans for future periods** 

During the next financial year, the Association will continue to review its income base and to control expenditure through judicious monitoring of outgoings and carefully prepared budgets. Priorities for the next financial year include: 

1. To hold a Paget’s Awareness Day in 2022 coinciding with the birthdate of Sir James Paget (11th January). Recognising the fact that the Association was able to considerably extend the reach of the Awareness Day event in 2021 through a digital approach, a similar strategy will be used for 2022 with prominent use of social media channels. As alluded to earlier, preparations for the 2022 Awareness Day were conducted towards the end of 2021, as were the video recordings which formed the basis of the event that would focus on a global perspective on Paget’s disease. 

2. To hold two face-to-face patient information events during 2022, one in Oxford, on 24th June 2022 and another on 30th September 2022, in Cardiff, to coincide with the AGM of the Association. 

3. To continue with virtual and local patient support groups, where there is need and considering any UK Government restrictions that may be in force due to COVID-19. 

4. To allocate expenditure on social media activity with a budget of approximately £10,000 during the coming year to publicise the Association’s charitable objectives and activities. It is anticipated that the increase in social media activity might provide a new channel by which donations to the Association can be made. 

5. To advertise a Research Grants Round in January 2022 with an indicative budget of £168,000. 

6. To prepare for the Association’s 50th Anniversary celebrations in 2023. This will involve several activities, including a fundraising campaign with a target of raising £50,000 by the end of 2023; establishing a focus group to help shape the strategy of the charity over future years and to host an international scientific symposium on Paget’s disease coupled to an information session aimed at patients in the spring of 2023 in Manchester, the Association’s birthplace. 

Page 5 



**National Association for the Relief of Pagets Disease Trustees' Report** 

7. The board of Trustees felt that while development of a medical education programme in Paget’s disease and a review of the PACE centre programme remained important objectives, this work might need to be deferred until 2023 given the many other activities planned for 2022. 

## **Structure, governance and management** 

## _**Nature of governing document**_ 

The National Association for the relief of Paget's Disease was founded in 1973. It is an unincorporated association governed by a Constitution and registered with the Charity Commission. During 2009, the charity adopted the working name of The Paget's Association, and this is the name to be used in this report. 

## _**Structure of the Association**_ 

The Board of Trustees is responsible for setting the strategy and policies of the Paget’s Association. The Board has up to twelve members and has three sub-committees. The role of these is to conduct a detailed analysis and review of the areas for which they are responsible, and to give strategic advice to the Board to facilitate delivery of the objectives of the organisation. Recommendations of the sub-committees are reported to and ratified by the Board of Trustees. 

Throughout 2021, the Finance Sub-Committee was chaired by Professor Stuart Ralston, the Technology SubCommittee was chaired by Dr Sheelagh Farrow and the Research Sub-Committee was chaired by Professor Rob Layfield. 

## _**Day to day running of the Association**_ 

Day to day running of the Charity is undertaken by the staff based at the charity’s registered office in Swinton. Currently the Association employs three full time members of staff. These are an office manager, an administrative assistant, and a specialist nurse. Employees of the Association are line managed by the Chairman of the Association who conducts annual staff appraisals to review performance against objectives for the previous year and to set objectives for the coming year. The organisational structure of the charity as of 31st December 2021 is shown in Figure 1. 

Page 6 



**National Association for the Relief of Pagets Disease Trustees' Report** 

**Figure 1. Organisational Structure of the Paget’s Association** 


Page 7 



**National Association for the Relief of Pagets Disease Trustees' Report** 

## _**Recruitment and appointment of trustees**_ 

Advertisements for trustees are posted on the website of the Association when a position becomes available. Prospective Trustees may apply by contacting the Chairman of Association by letter or email. Their suitability for appointment is then discussed by the Board of Trustees. If the prospective candidate is thought to be eligible to act as a trustee and is thought to offer expertise that would benefit the charity, an informal interview is set up with the Chair and other representatives of the Board. If the prospective candidate is felt to be suitable for appointment following this procedure their name is put forward to members of the Association for election at an upcoming Annual General Meeting of the Association. The prospective trustee may then be appointed based on votes cast by members of the Association. 

## _**Induction and training of trustees**_ 

New trustees are provided with a one-to -one training session by the Chairman of the Board of Trustees who provides an overview of the duties of a trustee, the aims of the charity, the charity’s structure and practical aspects relevant to its day-to-day operation. Additional training sessions are organised with the chairs of the Finance Subcommittee, the Research Sub-committee and the Technology Sub-committee. New trustees also have the option of attending training courses on the responsibilities of Charity Trustees. 

## _**Major risks and management of those risks**_ 

The Trustees have examined the major strategic, business and operational risks that the Association faces and confirm that policies have been established to ensure regular monitoring and reporting. This will allow for timely intervention when necessary to lessen these risks. 

The annual report was approved by the trustees of the charity on 28[th] April 2022 and signed on its behalf by: 

......................................... Professor Stuart Ralston Trustee 

Page 8 



## **National Association for the Relief of Pagets Disease Statement of Trustees' Responsibilities** 

The trustees are responsible for preparing the trustees' report and the financial statements in accordance with the United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) and applicable law and regulations. 

The law applicable to charities requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources of the charity for that period. In preparing these financial statements, the trustees are required to: 

- select suitable accounting policies and then apply them consistently; 

- observe the methods and principles in the Charities SORP; 

- make judgements and estimates that are reasonable and prudent; 

- state whether applicable accounting standards have been followed; and 

- prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business. 

The trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy at any time the financial position of the charity and 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. The trustees are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. 

Approved by the trustees of the charity on 28[th] April 2022 and signed on its behalf by: 

......................................... Professor Stuart Ralston Trustee 

Page 9 



## **National Association for the Relief of Pagets Disease Independent Examiner's Report to the trustees of National Association for the Relief of Pagets Disease** 

I report to the charity trustees on my examination of the accounts of the charity for the year ended 31 December 2021 which are set out on pages 11 to 24. 

## **Respective responsibilities of trustees and examiner** 

As the charity’s trustees of National Association for the Relief of Pagets Disease 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 National Association for the Relief of Pagets Disease'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: 

1. accounting records were not kept in respect of National Association for the Relief of Pagets Disease as required by section 130 of the Act; or 

2. the accounts do not accord with those records; or 

3. the accounts do not comply with the accounting 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. 

...................................... Sue Hutchinson FCCA 

Beever and Struthers St. George's House 215 - 219 Chester Road Manchester M15 4JE 

Date:............................. 

Page 10 



## **National Association for the Relief of Pagets Disease Statement of Financial Activities for the Year Ended 31 December 2021** 

||**Unrestricted**<br>**Total**|
|---|---|
||**funds**<br>**2021**|
|**Note**|**£**<br>**£**|
|**Income and Endowments from:**||
|Donations and legacies<br>2|170,474<br>170,474|
|Other trading activities<br>3|23,112<br>23,112|
|Investment income<br>4|11,602<br>11,602|
|Total income||
||205,188<br>205,188|
|**Expenditure on:**||
|Raising funds<br>5|(42,262)<br>(42,262)|
|Charitable activities<br>6|(215,040)<br>(215,040)|
|Total expenditure||
||(257,302)<br>(257,302)|
|Gains/losses on investment assets|60,049<br>60,049|
|Net expenditure||
||(197,253)<br>(197,253)|
|Net movement in funds||
||7,935<br>7,935|
|**Reconciliation of funds**||
|Total funds brought forward||
||1,022,600<br>1,022,600|
|Total funds carried forward<br>18||
||1,030,535<br>1,030,535|



All of the charity's activities derive from continuing operations during the above two periods. The funds breakdown for 2021 is shown in note 18. 

The prior year Statement of Financial Activities is shown on page 24. 

The notes on pages 13 to 24 form an integral part of these financial statements. Page 11 



## **National Association for the Relief of Pagets Disease (Registration number: 266071) Balance Sheet as at 31 December 2021** 

||**2021**<br>**2020**|
|---|---|
|**Note**|**£**<br>**£**|
|**Fixed assets**||
|||
|Intangible assets<br>12|5,973<br>8,285|
|Tangible assets<br>13|2,166<br>2,672|
|Investments<br>14|755,930<br>692,354|
||764,069<br>703,311|
|**Current assets**||
|||
|Debtors<br>15|220,714<br>172,214|
|Cash at bank and in hand<br>16|216,066<br>309,514|
||436,780<br>481,728|
|**Creditors: Amounts falling due within oneyear**<br>17||
||(170,314)<br>(162,439)|
|**Net current**assets||
||266,466<br>319,289|
|**Net**assets||
||1,030,535<br>1,022,600|
|**Funds of the charity:**||
|**Unrestricted income funds**||
|||
|Unrestricted funds|1,030,535<br>1,022,600|
|**Total funds**<br>18||
||1,030,535<br>1,022,600|



The financial statements on pages 11 to 24 were approved by the trustees, and authorised for issue on 28[th] April 2022 and signed on their behalf by: 

......................................... 

Professor Stuart Ralston Trustee 

The notes on pages 13 to 24 form an integral part of these financial statements. Page 12 



**National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

## **1 Accounting policies** 

## **Statement of compliance** 

The financial statements have been prepared in accordance with 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) (effective 1 January 2019) - (Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Charities Act 2011. 

## **Basis of preparation** 

National Association for the Relief of Pagets Disease 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 notes. 

## **Going concern** 

The trustees consider that there are no material uncertainties about the charity's ability to continue as a going concern. 

## **Income and endowments** 

Voluntary income including donations, gifts, legacies and grants that provide core funding or are of a general nature is recognised when the charity has entitlement to the income, it is probable that the income will be received and the amount can be measured with sufficient reliability. 

## _**Donations and legacies**_ 

Donations and legacies are recognised on a receivable basis when receipt is probable and the amount can be reliably measured. 

## _**Investment income**_ 

Dividends are recognised once the dividend has been declared and notification has been received of the dividend due. 

## **Expenditure** 

All expenditure is recognised once there is a legal or constructive obligation to that expenditure, it is probable settlement is required and the amount can be measured reliably. All costs are allocated to the applicable expenditure heading that aggregate similar costs to that category. Where costs cannot be directly attributed to particular headings they have been allocated on a basis consistent with the use of resources, with central staff costs allocated on the basis of time spent, and depreciation charges allocated on the portion of the asset’s use. Other support costs are allocated based on the spread of staff costs. 

## _**Raising funds**_ 

These are costs incurred in attracting voluntary income, the management of investments and those incurred in trading activities that raise funds. 

## _**Charitable activities**_ 

Charitable expenditure comprises those costs incurred by the charity in the delivery of its activities and services for its beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them. 

Page 13 



## **National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

## _**Grant expenditure**_ 

Grants payable are payments made to third parties in furtherance of the Charities' objects. In the case of an unconditional grant offer this is accrued once the recipient has been notified of the grant awarded. This notification gives the recipient a reasonable expectation that they will receive the grant. 

## **Support costs** 

Support costs include central functions and have been allocated to activity cost categories on a basis consistent with the use of resources, for example, allocating property costs by floor areas, or per capita, staff costs by the time spent and other costs by their usage. 

## **Governance costs** 

These include the costs attributable to the charity’s compliance with constitutional and statutory requirements, including audit, strategic management and trustees’s meetings and reimbursed expenses. 

## **Taxation** 

The charity is exempt from tax on income and gains falling within section 5050 of the Taxes Act 1988 or section 252 of the Taxation of Chargeable Gains Act 1992 to the extent that these are applied to its charitable objects. 

## **Intangible assets** 

Intangible assets are stated in the Balance Sheet at cost less accumulated amortisation and impairment. They are amortised on a straight-line basis over their estimated useful lives. 

## **Amortisation** 

Amortisation is provided on intangible fixed assets so as to write off the cost, less any estimated residual value, over their expected useful economic life as follows: 

**Asset class Amortisation method and rate** Website/CRM Database 5 year straight line 

## **Tangible fixed assets** 

Individual fixed assets costing £100.00 or more are initially recorded at cost. 

## **Depreciation and amortisation** 

Depreciation is provided on tangible fixed assets so as to write off the cost or valuation, less any estimated residual value, over their expected useful economic life as follows: 

**Asset class Depreciation method and rate** Fixed and fittings 15% reducing balance 

Page 14 



**National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

## **Fixed asset investments** 

Fixed asset investments, other than programme related investments, are included at market value at the balance sheet date. Realised gains and losses on investments are calculated as the difference between sales proceeds and their market value at the start of the year, or their subsequent cost, and are charged or credited to the Statement of Financial Activities in the period of disposal. 

Unrealised gains and losses represent the movement in market values during the year and are credited or charged to the Statement of Financial Activities based on the market value at the year end. 

## **Cash and cash equivalents** 

Cash and cash equivalents comprise cash on hand and call deposits, and other short-term highly liquid investments that are readily convertible to a known amount of cash and are subject to an insignificant risk of change in value. 

## **Fund structure** 

Unrestricted income funds are general funds that are available for use at the trustees's discretion in furtherance of the objectives of the charity. 

Restricted income funds are those donated for use in a particular area or for specific purposes, the use of which is restricted to that area or purpose. 

## **Pensions and other post retirement obligations** 

The charity operates a defined contribution pension scheme which is a pension plan under which fixed contributions are paid into a pension fund and the charity has no legal or constructive obligation to pay further contributions even if the fund does not hold sufficient assets to pay all employees the benefits relating to employee service in the current and prior periods. 

Contributions to defined contribution plans are recognised in the Statement of Financial Activities when they are due. 

## **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 investments which are recognised at market value. 

Page 15 



## **National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

- **2 Income from donations and legacies** 

|**2**<br>**Income from donations and legacies**||
|---|---|
||**Unrestricted**|
||**funds**<br>**Total**<br>**Total**|
||**General**<br>**2021**<br>**2020**|
||**£**<br>**£**<br>**£**|
|Donations and legacies;||
|Donations from individuals|6,660<br>6,660<br>9,962|
|Legacies|160,430<br>160,430<br>43,065|
|Gift aid reclaimed|3,384<br>3,384<br>2,302|
||170,474<br>170,474<br>55,329|
|**3**<br>**Income from other trading activities**||
||**Unrestricted**|
||**funds**<br>**Total**<br>**Total**|
||**General**<br>**2021**<br>**2020**|
||**£**<br>**£**<br>**£**|
|Trading income;||
|200 Club|5,680<br>5,680<br>6,195|
|Events income;||
|Pennies for Paget's Boxes|-<br>-<br>27|
|Membership subscriptions|4,925<br>4,925<br>5,065|
|Sundry Merchandise|59<br>59<br>101|
|SundryFundraising|12,448<br>12,448<br>5,415|
||23,112<br>23,112<br>16,803|
|**4**<br>**Investment income**||
||**Unrestricted**|
||**funds**<br>**Total**<br>**Total**|
||**General**<br>**2021**<br>**2020**|
||**£**<br>**£**<br>**£**|
|Interest receivable and similar income;||
|Interest receivable on bank deposits|1,950<br>1,950<br>2,950|
|Other income from fixed asset investments|9,652<br>9,652<br>13,191|
||11,602<br>11,602<br>16,141|



Page 16 



## **National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

- **5 Expenditure on raising funds** 

|**5**<br>**Expenditure on raising funds**|||||
|---|---|---|---|---|
||||**Allocated support**|**Total**|
||**Direct**|**costs**|**costs**|**2021**|
||**£**||**£**|**£**|
|Costs of trading activities||5,419|30,717|36,136|
|Investment management costs||6,126|-|6,126|
|||11,545|30,717|42,262|
||||**Allocated support**|**Total**|
||**Direct**|**costs**|**costs**|**2020**|
||**£**||**£**|**£**|
|Costs of trading activities||10,118|30,185|40,303|
|Investment management costs||5,491|-|5,491|
|||15,609|30,185|45,794|



## **6 Expenditure on charitable activities** 

||**Activity**<br>**undertaken**<br>**Grant funding of**<br>**Activity support**|
|---|---|
||**directly**<br>**activity**<br>**costs**<br>**2021**|
||<br>**£**<br> <br>**£**<br>**£**<br>**£**|
|Support and raising awareness|27,116<br>-<br>107,180<br>134,296|
|Research|470<br>67,927<br>12,347<br>80,744|
||27,586<br>67,927<br>119,527<br>215,040|
||**Activity**<br>**undertaken**<br>**Grant funding of**<br>**Activity support**|
||**directly**<br>**activity**<br>**costs**<br>**2020**|
||<br>**£**<br> <br>**£**<br>**£**<br>**£**|
|Support and raising awareness|19,247<br>-<br>104,139<br>123,386|
|Research|470<br>210,566<br>11,910<br>222,946|
||19,717<br>210,566<br>116,049<br>346,332|



Page 17 



## **National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

## **7 Analysis of governance and support costs** 

**Support costs allocated to charitable activities** 

|**Support costs allocated to charitable activities**|**Support costs allocated to charitable activities**|
|---|---|
|**Basis of allocation**<br>**Governance**<br>**costs**<br>**£**<br>**Support costs**<br>**£**<br>**Total**<br>**2021**<br>**£**||
|Staff costs<br>Staff time<br>11,525<br>88,821<br>100,346||
|Office costs<br>Staff time<br>-<br>18,124<br>18,124||
|Staff training<br>Staff time<br>-<br>125<br>125||
|IT costs<br>Staff time<br>-<br>5,334<br>5,334||
|Depreciation<br>Staff time<br>-<br>2,817<br>2,817||
|Bank charges<br>Staff time<br>-<br>485<br>485||
|Legal and professional costs<br>Staff time<br>20<br>-<br>20||
|Cost of trustee meetings<br>Staff time<br>4,887<br>-<br>4,887||
|Accountancyfees<br>Staff time<br>3,885<br>-<br>3,885||
|20,317<br>115,706<br>136,023||
|**Basis of allocation**<br>**Governance**<br>**costs**<br>**£**<br>**Support costs**<br>**£**<br>**Total**<br>**2020**<br>**£**||
|Staff costs<br>Staff time|11,293<br>99,168<br>110,461|
|Office costs<br>Staff time|-<br>16,420<br>16,420|
|Staff training<br>Staff time|-<br>433<br>433|
|IT costs<br>Staff time|-<br>7,862<br>7,862|
|Depreciation<br>Staff time|-<br>2,823<br>2,823|
|Bank charges<br>Staff time|-<br>481<br>481|
|Insurance<br>Staff time|-<br>2,220<br>2,220|
|Legal and professional costs<br>Staff time|1,060<br>-<br>1,060|
|Cost of trustee meetings<br>Staff time|985<br>-<br>985|
|Accountancyfees<br>Staff time|3,489<br>-<br>3,489|
||16,827<br>129,407<br>146,234|



## **8 Trustees remuneration and expenses** 

No trustees, nor any persons connected with them, have received any remuneration from the charity during the year. 

No trustees have received any other benefits from the charity during the year. 

During the year travel and subsistence expenses totalling £4,157 (2020: £749) were reimbursed or paid directly to seven trustees (2020: six trustees). 

Page 18 



**National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

## **9 Staff costs** 

The aggregate payroll costs were as follows: 

|**9**<br>**Staff costs**<br>The aggregate payroll costs were as follows:||
|---|---|
||**2021**<br>**2020**|
||**£**<br>**£**|
|**Staff costs during the year were:**||
|||
|Wages and salaries|100,346<br>96,947|
|Social security costs|6,193<br>5,758|
|Pension costs|8,028<br>7,756|
||114,567<br>110,461|



The monthly average number of persons (including senior management team) employed by the charity during the year expressed as full-time equivalents was as follows: 

|<br>year expressed as full-time equivalents was as follows:||
|---|---|
||**2021**<br>**2020**|
||**No**<br>**No**|
|Charitable activities|3<br>3|



No employee received emoluments of more than £60,000 during the year 

## **10 Independent examiner's remuneration** 

|**10**<br>**Independent examiner's remuneration**|||||
|---|---|---|---|---|
||**2021**||**2020**||
||**£**||**£**||
|Examination of the financial statements||2,035||1,968|
|**Other fees to examiners**|||||
|All other services||1,850||1,521|



## **11 Taxation** 

The income and gains of the charity are exempt from taxation to the extent they are applied to its charitable objectives. 

Page 19 



**National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

## **12 Intangible fixed assets** 

|**12**<br>**Intangible fixed assets**||
|---|---|
||**Website/CRM**<br>**Database**<br>**Total**|
||**£**<br>**£**|
|**Cost**||
|At 1 January2021|11,560<br>11,560|
|At 31 December 2021|11,560<br>11,560|
|**Amortisation**||
|At 1 January 2021|3,275<br>3,275|
|Charge for theyear|2,312<br>2,312|
|At 31 December 2021|5,587<br>5,587|
|**Net book value**||
|At 31 December 2021|5,973<br>5,973|
|At 31 December 2020|8,285<br>8,285|
|**13**<br>**Tangible fixed assets**||
||**Furniture and**<br>**equipment**<br>**Total**|
||<br>**£**<br>**£**|
|**Cost**||
|At 1 January2021|3,776<br>3,776|
|At 31 December 2021|3,776<br>3,776|
|**Depreciation**||
|At 1 January 2021|1,104<br>1,104|
|Charge for theyear|506<br>506|
|At 31 December 2021|1,610<br>1,610|
|**Net book value**||
|At 31 December 2021|2,166<br>2,166|
|At 31 December 2020|2,672<br>2,672|
|**14**<br>**Fixed asset investments**||
||**2021**<br>**2020**|
||**£**<br>**£**|
|Other investments|755,930<br>692,354|



Page 20 



## **National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

## **14. Fixed Asset Investments (continued)** 

|**14. Fixed Asset Investments (continued)**|**14. Fixed Asset Investments (continued)**|
|---|---|
|**Listed**<br>**investments**<br>**Cash held with**<br>**investors**<br>**Total**||
|**£**<br>**£**<br>**£**||
|**Cost or Valuation**||
|At 1 January 2021<br>664,371<br>27,983<br>692,354||
|Revaluation<br>60,049<br>53,947<br>113,996||
|Additions<br>62,259<br>-<br>62,259||
|Disposals<br>(112,679)<br>-<br>(112,679)||
|At 31 December 2021<br>674,000<br>81,930<br>755,930||
|**Net book value**||
|At 31 December 2021<br>674,000<br>81,930<br>755,930||
|At 31 December 2020<br>664,371<br>27,983<br>692,354||
|**15**<br>**Debtors**||
||**2021**<br>**2020**|
||**£**<br>**£**|
|Accrued income|220,714<br>172,214|
|**16**<br>**Cash and cash equivalents**||
||**2021**<br>**2020**|
||**£**<br>**£**|
|Cash on hand|103<br>68|
|Cash at bank|215,963<br>309,446|
||216,066<br>309,514|
|**17**<br>**Creditors: amounts falling due within one year**||
||**2021**<br>**2020**|
||**£**<br>**£**|
|Trade creditors|96<br>76|
|Other taxation and social security|2,668<br>2,568|
|Grants payable|165,513<br>157,557|
|Accruals|2,037<br>2,238|
||170,314<br>162,439|



Page 21 



## **National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

## **18 Funds** 

|**18**<br>**Funds**||
|---|---|
||**Other**<br>**Balance at 31**|
||**Balance at 1**<br>**Incoming**<br>**Resources**<br>**recognised**<br>**December**|
||**January 2021**<br>**resources**<br>**expended**<br>**gains/(losses)**<br>**2021**|
||<br>**£**<br>**£**<br> <br>**£**<br> <br>**£**<br>**£**|
|**Unrestricted funds**||
|General||
||1,022,600<br>205,188<br>(257,302)<br>60,049<br>1,030,535|
||**Other**<br>**Balance at 31**|
||**Balance at 1**<br>**Incoming**<br>**Resources**<br>**recognised**<br>**December**|
||**January 2020**<br>**resources**<br>**expended**<br>**gains/(losses)**<br>**2020**|
||<br>**£**<br>**£**<br> <br>**£**<br> <br>**£**<br>**£**|
|**Unrestricted funds**||
|General||
||1,140,551<br>85,831<br>(201,142)<br>(2,640)<br>1,022,600|
|**Restricted funds**||
||183,452<br>2,442<br>(190,984)<br>5,090<br>-|
|**Total funds**||
||1,324,003<br>88,273<br>(392,126)<br>2,450<br>1,022,600|



The specific purposes for which the funds are to be applied are as follows: 

Restricted funds are specific monies held by the charity for the purpose of contributing towards research and education. 

Page 22 



## **National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

## **19 Analysis of net assets between funds** 

|**19**<br>**Analysis of net assets between funds**|||
|---|---|---|
||**Unrestricted**|**Total funds at 31**|
||**funds**|**December**|
||**General**|**2021**|
||**£**|**£**|
|Intangible fixed assets|5,973|5,973|
|Tangible fixed assets|2,166|2,166|
|Fixed asset investments|755,930|755,930|
|Current assets|436,780|436,780|
|Current liabilities|(170,314)|(170,314)|
|Total net assets|1,030,535|1,030,535|
||**Unrestricted**|**Total funds at 31**|
||**funds**|**December**|
||**General**|**2020**|
||**£**|**£**|
|Intangible fixed assets|8,285|8,285|
|Tangible fixed assets|2,672|2,672|
|Fixed asset investments|692,354|692,354|
|Current assets|481,728|481,728|
|Current liabilities|(162,439)|(162,439)|
|Total net assets|1,022,600|1,022,600|



## **20 Related party transactions** 

There were no related party transactions in the current year or in the previous year. 

Page 23 



## **National Association for the Relief of Pagets Disease Notes to the Financial Statements for the Year Ended 31 December 2021** 

## **21 Prior year Statement of Financial Activities** 

|**21**<br>**Prior year Statement of Financial Activities**||
|---|---|
||**Unrestricted**<br>**Total**|
||**funds**<br>**Restricted funds**<br>**2020**|
|**Note**|**£**<br>**£**<br>**£**|
|**Income and Endowments from:**||
|Donations and legacies<br>2|55,329<br>-<br>55,329|
|Other trading activities<br>3|16,776<br>27<br>16,803|
|Investment income<br>4|13,726<br>2,415<br>16,141|
|Total income||
||85,831<br>2,442<br>88,273|
|**Expenditure on:**||
|Raising funds<br>5|(44,634)<br>(1,160)<br>(45,794)|
|Charitable activities<br>6|(156,508)<br>(189,824)<br>(346,332)|
|Total expenditure||
||(201,142)<br>(190,984)<br>(392,126)|
|Gains/losses on investment assets|(2,640)<br>5,090<br>2,450|
|Net expenditure||
||(117,951)<br>(183,452)<br>(301,403)|
|Net movement in funds||
||(117,951)<br>(183,452)<br>(301,403)|
|**Reconciliation of funds**||
|Total funds brought forward||
||1,140,551<br>183,452<br>1,324,003|
|Total funds carried forward<br>18||
||1,022,600<br>-<br>1,022,600|



Page 24