Myositis UK
Registered Charity Number: 327791
Trustees Report and Financial Statements For the year ended 31[st] March 2022
Myositis UK Trustees Report 2022
| Contents: | Page |
|---|---|
| Reference & Administrative Details | 1 |
| Chairs Review | 2-3 |
| Trustees Report | 4-10 |
| Independent Examiners Report | 11 |
| Statement of Financial Activities | 12 |
| Balance Sheet | 13 |
| Notes to the Accounts | 14-18 |
Myositis UK - Charity Registration Number 327791 Reference & administrative Information for the year ended 2022
Myositis UK
Charity Registration Number 327791 Date of registration 26 April 1988 Registered Office 146 Newtown Road Woolston, Southampton SO19 9HR Trustees Staff Mr Les Oakley, MBE Chairman Irene Oakley Mrs Paula Jordan Honorary General Secretary Myositis UK Co-ordinator Mrs Joanne Goode Honorary Treasurer Mrs Laura Northcote Trustee
Names and Address of Advisors:
Bankers: CAF Bank Limited Lloyds TSB Kings Hill, West Malling PO Box 112, Canons House Kent, ME19 4TA Canons Way, Bristol, BS9 97L
Independent Examiner: Bridget Kalloushi
ACIE 6, Linden Road Muswell Hill N10 3DH
Medical Advisory Panel
Chair – Professor Mike Hanna, University College London Vice Chair – Neil McHugh, University of Bath Liaison to the Board of Trustees – Professor Hector Chinoy, The University of Manchester SAC Chair – Professor Lucy Wedderburn, Institute of Child Health (University College London)
Scientific Advisory Committee
Chair – Professor Lucy Wedderburn, Institute of Child Health (University College London)
Professor Pedro Machado, University College London Dr Janine Lamb, University of Manchester Dr Liza McCann, Alder Hey Hospital/University of Liverpool
Dr James Lilleker, The University of Manchester
Dr Patrick Gordon, King’s College London
Dr Gita Ramdharry, University College London
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Myositis UK - Charity Registration Number 327791
For the Year Ended 31[st] March 2022
Chairman’s review
Although we were still experiencing some of the restricting issues of Covid-19 during the year it has not preventing the charity from operating. There is also no doubt that Trustee and treasurer, Jo Goode, who facilitates her Face Book Page Myositis Community of Great Britain and Ireland has greatly reduced the isolation of people having to live and cope with myositis. Members, family and friends have during the year tirelessly raised funds for which we are incredibly grateful. Our London marathon team continued to train, being focussed on not only the running, but having the myositis cause as the motivation for their effort and determination. This event for Team Muscle took place on Sunday 3[rd] of October and raised over £11,000 for the charity.
During this period, it has been difficult for the trustees to make financial decisions when considering the next steps to take to advance progress in myositis particularly in medical research. Irene and I are well aware that we are getting on in years and time waits for nobody! Our lifetime ambition has been to see myositis in all its forms as a group of diseases that can be successfully managed or even, dare I say, cured.
As I reported last year at the end of 2019 the charity was informed that it was a major beneficiary of the estate of the late Joyce Winifred Norman. She kindly and quietly bequeathed the charity £269,772.71 which the charity received in March 2020. This is the largest gift the charity has ever received, and the trustees were stunned to hear this news. We realised that we could now consider expanding medical research and after being on the back foot the emphasis was now on the front one. Joyce wished that this money be spent on Inclusion Body Myositis in memory of her husband who died from IBM. In agreement with her wishes this we will do. But what this also means is the charities existing funds can be allocated to the other diseases we support and give them a boost too.
As a result of this wonderful gift the trustees have needed to consider how we manage and determine developments in myositis research. Zoom meetings were held with the trustees, researchers and doctors to establish two panels of experts. One a medical panel and the other a scientific panel. These panels will oversee and consider future projects. Their recommendations will then be put the trustees in any decision making.
As a result of this meeting two Advisory boards have now been formed. A medical Advisory Board (MAB) consisting of four members and a Scientific board consisting of seven members. It was agreed that this was the way forward and the medical profession could be acknowledged for their individual input and for their involvement in the progress of myositis research. It also means that as the charity has a recognised medical structure, we can work with other grant funders as equal partners to facilitate a larger project if the opportunity arises.
This wonderful development has been possible by the sheer kindness of Joyce who valued the charity worthy of this gift. We cannot personally say thank you to her, but we can make this gift work in memory of her and perhaps it will create another great step forward in beating this disease.
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Myositis UK - Charity Registration Number 327791
For the Year Ended 31[st] March 2022
We were still unable to hold any meetings in person again this year. In 2022 we will be holding our AGM and conference in person again.
We still had a small stock of Christmas cards, so no new cards were ordered. These were offered for sale at a reduced price. These were all sold so new designs will be available in 2022.
The 4th Global Conference on Myositis will be held in Prague in June 2022, and we will again look to be sponsors at this event.
Due to the large number of charity places carried over due to the Covid pandemic the London Marathon decided to buy back some of these places. Each charity was informed of the number of places to be brought back and we received back payment for six places. This left us twelve places for 2022.
I would like to thank all who raised funds for the charity whether they are members, family, friends or our medical teams. To read and follow these wonderful people in their efforts has been amazing and very heartening. These events and projects have been well reported by the charity and deservedly published in our Charity News magazine and on our relevant web pages. I am particularly grateful to members, family and friends who have donated in memory of loved ones and to those who donated money in celebrating a special family occasion.
My appreciation is offered to the medical teams and their support staff for their tireless energy in helping our members with these miserable conditions, especially during these difficult times.
All charities need committed and dedicated people to make the charity realise its aims and ambition. Our trustees have worked very hard in what can appear to be a thankless task. Treasurer, Jo Goode, is quite remarkable in all her efforts associated with the charity. Auditor, Bridget Kalloushi, has given her time in overseeing our accounts. The charity’s association with Simon Chadwick, who produces our news magazine, is very much appreciated.
Les Oakley MBE
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Chairman
L C Oakley
16[th] October 2022
Myositis UK - Charity Registration Number 327791
Trustees Annual Report for the year ended 31[st] March 2022
The trustees of Myositis UK present their report & financial statement year ended 21[st] March 2022
Structure, Governance and Management
Nature of the Governing Document and Construction of the Charity
The charity is a registered charity, charity number 327791. The charity is governed by a constitution adopted 15[th] April 1988 and registered on 26[th] April 1988.
The methods adopted for the recruitment and appointment of new trustees
The Trustees shall retire annually but shall be eligible to offer themselves for re-election. Not less than 2 members may propose a member for election having first obtained the consent of such candidate. The Executive Committee can co-opt additional members from time to time to fill a vacancy or otherwise.
The organisational structure of the charity and how decisions are made
The Charity is managed by the Executive Committee consisting of the Chairman and General Secretary. The Trustees meet 3 times a year.
Decision making
Decisions are reached by consensus or, when necessary, by majority vote among the (at minimum) two voting members attending.
Risk management
The trustees have a duty to identify and review the risks to which the organisation is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud and error.
The Trustees are satisfied that systems are in place to mitigate the charity's exposure to the major risks. Policies and procedures are closely monitored. A key element in the management of financial risk is the setting of a reserves policy and its regular review.
The financial statements comply with current statutory requirements, the charity's trust deed and the statement of Recommended Practice - Accounting and Reporting by charities: SORP applicable to charities preparing their accounts in accordance with FRS 102.
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Trustees
Executive
Committee
Members
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Myositis UK - Charity Registration Number 327791
The Charity Principal Activities and Review of the Year Ended 31[st] March 2022
Objectives and Activities of the Charity
A summary of the objects of the charity as set out in its governing document
-
To provide up to date information on all forms of Myositis
-
To help give those affected a better understanding of their illness
-
To relieve the isolation felt by the individual when a rare illness is diagnosed
-
To guide those with the condition in the right direction of treatment
-
To raise awareness of the conditions
-
To raise funds to promote research
The charity's aims including the changes or differences it seeks to make
through its activities.
We exist to help, advise and inform people with Myositis, but in addition to this basic function,
we are trying to;
-
Increase awareness of Myositis in the UK
-
Generate good working relationships with the medical profession
-
Improve communication for members
-
Fund relevant research
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Myositis UK - Charity Registration Number 327791
Achievements and Performance For the Year Ended 31[st] March 2022
Details of significant activities (including its main programmes, projects, or services provided) that contribute to the achievement of the stated objectives during 2021/2022
We continue to offer free membership to allow everyone access to information regardless of their circumstances. We would like to express our thanks to all the members and supporters who have donated or raised funds throughout the year. This support enables us to continue our work to advance the aims and objectives of the charity.
We continue to offer our website and community forum.
Members continued and took on challenges to fund raise for Myositis UK, Helen Kurtz continued “Helen's Fibre 4 Fibres Fundraiser” throughout the year.
The London Marathon Gold Bond purchased by the charity allows us 5 places each year for 5 years. The Marathon took place on the 3[rd] October 2021 and our runners raised over £11,000.
This year we were unable to hold the Christmas Draw, but were able to sell Christmas
Cards.
During 2021 – 2022 our bear, “Teddy-Bo”, has not been on any travels, so no new photographs have been taken, but hopefully he will continue travelling in the future to help raise awareness of the charity and Myositis.
The AGM was arranged as a Zoom meeting to be held on Sunday 23rd January 2021 at 11am. This was cancelled due to unforeseen circumstances. The AGM took place on Sunday 26th June 2022.
Due to the Covid 19 pandemic there were no in person meetings to attend.
Zoom meetings were held to discuss the formation of a Medical Advisory Board and A Scientific Board to develop a structured form for grant applications and to advise the trustees on any applications for funding.
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Myositis UK - Charity Registration Number 327791
For the Year Ended 31[st] March 2022
Financial Review – 2021-2022
In the year 2021-2022 total income was £85,177 of which £85,177 was unrestricted, there was no restrictive income in comparison in the year 2020-21 income was £347,239 of which £77,481 was unrestricted and restricted income £269,758.
Expenditure in 2021-22 total was £18,757 of which £18,757 was unrestricted there was no restricted expenditure in comparison in the year 2020-21 expenditure was £152,570 of which £152,570 was unrestricted, there was no restricted expenditure.
The detailed figures are included in the financial statements. At the year end the charity incurred a surplus of £66,420. A surplus of was £193,901 brought forward for the year
2020-21 leaving an unrestricted surplus to carry forward of £260,321. The restricted funds held at 31[st] March 2022 are £269,758.
The funds held at 31[st] March 2022
Unrestricted Fund 260,321 Restricted Funds 269,758 Total Funds 31[st] March 2022 £ 530,079
Fundraising Activities – 2021-2022
The London Marathon took place in October 2021 The remaining stock of Christmas cards were offered for sale this year (December 22). Supporters/members continued to fun raise for the charity, making donations & holding events.
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Myositis UK - Charity Registration Number 327791
For the Year Ended 31[st] March 2022
Public Benefit Statement
The trustees confirm that they have referred to the guidance contained in the Charity Commission’s general guidance on public benefit when reviewing the charity’s aims and objectives and in the planning of future activities and setting the grant making policy for the year.
Plans for Future Periods
For the period 2022/2023:
The Covid 19 pandemic will have an effect on what will be possible in the coming year but we would hope to:
Attend meetings and conferences as appropriate throughout the year which have an interest in Myositis
-
Continue with our main fund-raising activities – including the selling of Christmas cards for 2021
-
Continue to maintain a good relationship with the medical profession
-
Continue to support our members
-
Continue to fund research
Grants paid in the year ended 31[st] March 2022
No grants paid during period 2021-22 (due to covid restrictions postponing medical research)
Myositis UK - Charity Registration Number 327791
For the Year Ended 31[st] March 2022
Page 8
Grants Approved, pending payment
Dr Pedro Machado for IBM AD amyloid PET imaging, at his request
had an extension approved by the trustees until 31[st] December 2020
(approved October 2017). 12,000
Database manager for four months for the IMACS core set measures online training tool. Dr Hector Chinoy & Dr James Lilleker, The University of Manchester &
Prof Raashid Luqmani, University of Oxford (approved January 2019). 5,000
Salary of Experimental Officer Hazel Platt for six months at The Faculty of Biology, Medicine and Health, University of Manchester has been extended until 30[th] June 2022 (approved June 2019).
12,800
Professor Lucy Wedderburn for the UK Juvenile Dermatomyositis Cohort & Biomarker Study (£20,000 contribution towards the salary costs of the JDM Study Co-ordinator & £10,000 contribution towards the cost of consumables required for the study (approved January 2020). 30,000
£ 59,800
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Myositis UK - Charity Registration Number 327791
For the Year Ended 31[st] March 2022
Reserves
The charity’s unrestricted reserves are: £260,321
The Charity’s restricted fund £269,758
Total funds held at 31[st] March 2022 £530,079
Reserves Policy
It is the policy of the charity to maintain unrestricted funds, which are the free reserves of the charity, at a level which can ensure the sustainability of the charity through periods of change, uncertainty and financial challenges. This is deemed necessary as a substantial part of the charity’s funding is from fundraising and there is no certainty that the level of funding required to continue and develop the charity’s activities will be received.
Going Concern
The board of Trustees are satisfied with the performance of the charity during the period and the position at 31[st] March 2022 and consider that the charity is in a good position to continue its activities during the coming year, and that the charity’s assets are adequate to fulfil its obligations.
This report was approved by the Trustee’s and signed on behalf of the Trustees by Mr Leslie Oakley MBE (Charman)
L C Oakley
Signature: ………………………….
Full Name: Mr Leslie Charles Oakley, MBE
Position: Chairman Date: 23/07/2023
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Myositis UK - Charity Registration Number 327791
For the Year Ended 31[st] March 2022
Independent Examiners Report
I report on the financial statements for the year ended 31st March 2022, which are set out on pages 12-18.
Respective responsibilities of trustees and examiner
The charity's trustees are responsible for the preparation of the accounts. The charity's trustees
consider that an audit is not required for this year (under section 144(2) of the Charities Act 2011 and that an independent examination is needed. I am qualified to undertake the examination by being a qualified member Associate Charity Independent Examiners.
It is my responsibility to:
-
examine the accounts under section 145 of the 2011 Act.
-
to follow the procedures laid down in the General Directions given by the Charity Commission
under section 145(5)(b) of the Act 2011; and
- to state whether particular matters have come to my attention.
Basis of independent examiner's Statement
My examination was carried out in accordance with the General Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently no opinion is given as to whether the accounts present a 'true and fair view' and the report is limited to those matters set out in the statement below.
Independent Examiner's Statement
In connection with my examination. no material matters have come to my attention which give me cause to believe that in, any material respect:
-
the accounting records were not kept in accordance with section 130 of the 2011 Act; or
-
the accounts did not accord with the accounting records; or
-
the accounts did 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 come across no 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.
Bridget Kalloushi Independent Examiner ACIE
B. Kalloushi
……………………………… date …………………..
6, Linden Road London N10 3DH
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Myositis UK - Charity Registration Number 327791 For the Year Ended 31[st] March 2022
Statement of Financial Activities for the year ended 31st March 2022
| Gener al |
Restrict ed |
2022 | Unrestrict ed |
Restrict ed |
2021 | |
| Fund | Funds | Total | Funds | Funds | Total | |
| Note | £ | £ | £ | £ | £ | £ |
| INCOME AND ENDOWMENT FORM |
||||||
| Donations, Grants |
72,510 | 271,758 | 344,26 8 |
21,384 | 21,38 4 |
|
| Fund Raising Activities | 45,019 | 45,01 9 |
||||
| Other Income Resources | 3,755 | 3,755 | 2,096 | 2,096 | ||
| TOTAL INCOMING RESOURCES |
76,265 | 271,758 | 348,02 3 |
68,499 | 0 | 68,49 9 |
| EXPENDITURE ON |
||||||
| Fund Raising Activities | 2,661 | 3,458 | 3,458 | |||
| Charitable Activities | 90,114 | 0 | 60,213 | 60,21 3 |
||
| TOTAL RESOURCES EXPENDED |
92,775 | 271,758 | 92,766 | 63,671 | 0 | 63,67 1 |
| NET INCOME/ (EXPENDITURE) ( |
16,510 ) |
4,738 | 4,738 | |||
| Before Transfer | ||||||
| NET MOVEMENT IN FUNDS ( |
16,510 ) |
0 | 0 | 4,738 | 0 | 4,738 |
| Total Funds brought forward at 31st March 2021 |
268,99 0 |
264,252 | 264,2 52 |
|||
| TOTAL FUNDS carried forward at 31st March 2022 |
252,48 0 |
271,758 | 524,23 8 |
268,990 | 0 | 268,9 90 |
| The notes form part of these accounts |
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Myositis UK – Charity Registration Number 327791
| 327791 | 327791 | |
|---|---|---|
| Balance Sheet as at 31st March 2022 | ||
| Notes | 2022 | 2021 |
| £ | £ | |
| FIXED ASSETS | ||
| Tangible Assets | - | |
| - | ||
| CURRENT ASSETS | ||
| Debtors | - | |
| - | ||
| Cash at Bank & on Deposit | 589,879 | 524,238 |
| CURRENT LIABILITIES | ||
| Income in Advance | - | |
| 779 | ||
| Accruals(page 9) | 59,800 | |
| 59,800 | ||
| Amounts falling due within one year | - | |
| - | ||
| NET CURRENT ASSETS | 530,079 | 463,659 |
| FUNDS | ||
| General Fund | 260,321 | |
| 193,901 | ||
| Restricted Funds(note 6) | 269,758 | 269,758 |
| TOTAL FUNDS | 530,079 | |
| 463,659 |
The notes on form part of these accounts
The accounts were approved by the Board of Trustees on 23/07/2023 and signed on its behalf by:
L C Oakley
……………………………………
Page 13
Mr Leslie Charles Oakley MBE
Date 23/07/2023
Myositis UK - Charity Registration Number 327791
Notes to the Accounts for the year ended 31[st] March 2022
Accounting policies
a. Basis of Preparing the Financial Statements
- 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 I 02) (effective 1st January 2019) - (Charities SORP FRS 102). The charity meets the definition of a public benefit entity under FRS I 02. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s).
b Going Concern
- The financial statements have been prepared on a going concern basis as the Trustees believe that no material uncertainties exist. The Trustees have considered the level of funds held and the expected level of income and expenditure for 12 months from authorising these financial statements. The budgeted income and expenditure are sufficient with the level of reserves for the Charity to be able to continue as a going concern.
c Cash Flow Statement
- As a small charity the charity is not required to prepare a cash flow statement under the exemption under SORP (FRS I 02) for Charities with income of less than £500,000.
d Income resources
All incoming resources are included in the Statement of Financial Activities
when:
Page 14
The charity is legally entitled to funds
There is sufficient certainty that receipt of the income is considered probable the amount can be reliably measured
Grants from Trusts and Donors are recognised as income in the SOFA in the year in which they are received. Any such income that is received for projects to be undertaken in future periods is carried forward as a restricted fund.
The Income and Expenditure account recognises the income applicable to the year's activities. Interest receivable is included when received by the Charity.
Myositis UK - Charity Registration Number 327791
Notes to the Accounts for the year ended 31[st] March 2022
e Expenditure
As a non-company Charity expenditure is recognised on the accrual’s basis under SORP (FRS 102). All costs which can be directly attributable to charitable activities are allocated thereto.
It is not considered that any purpose would be served in apportioning support costs
(ie. overheads, administration expenses and staff salaries) to particular charitable activities, as to do so would be arbitrary and could be misleading.
f Taxation
As a registered Charity (327791), it is exempt from taxation on
investment income applied for Charitable purposes and from taxation on capital gains.
g
Debtors
Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued all the amount prepaid after taking account of any trade discount due.
j Cash at bank and in hand
Cash at bank and in hand includes cash and short term highly liquid investments with a maturity of three months or less from the date of acquisition or opening of the deposit or similar account.
k 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 discount due.
l 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.
m
Significant Accounting Estimates and Judgements
The charity's estimates and assumptions are based on historical experience and expectation of future events and are reviewed annually.
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Myositis UK - Charity Registration Number 327791
Notes to the Accounts for the year ended 31[st] March 2022
n Fund Accounting
Unrestricted Funds are funds which can be used at the discretion of the Trustees in furtherance of the charity’s objectives.
Restricted Funds are funds which can only be used for specific purposes as specified by the donor or when funds have been raised for a specific purpose.
o Debts and Guarantees
The charity has not given any guarantees where there is an outstanding liability at the date of this statement.
The charity has no outstanding debts at the date of this statement which are secured on the assets of the charity.
p Risk Management
The Trustees have identified and reviewed the major risks to which the charity is exposed on a regular basis. Systems have been established to mitigate these risks. Main risk with the continuing low interest rates the income from invested funds CAF has significantly decreased. We continue to exercise tight budgetary control on all our expenditure in order that all our income is used properly
2. Trustees Remuneration & Expenses
No remuneration or expenses were paid to any Trustee or related party
3. Staff Costs 2022 2021 Salaries (including ER Costs) 11,917 13,084
No employee received remuneration in excess of £60,000 Average number of employees 1 Administration/Development 1
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Myositis UK - Charity Registration Number 327791
Notes to the Accounts for the year ended 31[st] March 2022
4. Analysis of Cost of Raising Funds
5. Analysis of Cost of Charitable Activity
The above expenditure has been directly allocated in accordance with the relevant restrictions
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Myositis UK - Charity Registration Number 327791 Notes to the Accounts for the year ended 31[st] March 2022
.
6. Statement of Financial Activities – Analysis of Income
| a Unrestricted |
a Unrestricted |
**Restricted ** |
Total Unrestricted |
|---|---|---|---|
| Restricted Total | |||
| Funds | Funds |
2022 Funds Funds |
|
| 2021 | |||
| Grants/Legacies - |
269,758 269,758 2,000 269,758 | ||
| 271,758 | |||
| Other Donations/ | |||
| Fundraising Activities 84,694 | - 84,694 | 71,726 - 71,726 | |
| ________ | |||
| £ 84,694 | 269,758 354,452 73,726 269,758 | ||
| 343,484 | |||
| ________ | |||
| b Other Income Resources | |||
| Sundry Income 483 |
- | 483 3,755 - | |
| 3,755 | |||
| _________ | |||
| £85,177 | 269,758 | 354,935 77,481 269,758 | |
| 347,239 | |||
| _________ |
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