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2024-11-30-accounts

CYSTIC FIBROSIS CARE

REPORT AND FINANCIAL STATEMENTS

FOR THE 12 MONTHS ENDED 30 NOVEMBER 2024

CHARITY NUMBER 1162445

CYSTIC FIBROSIS CARE

CONTENTS OF THE FINANCIAL STATEMENTS for the 12 months ended 30 November 2024

Page
Reference and Administraton Details of the Charity, its Trustees and Advisers 3
Trustees’ Annual Report
4
Independent Examiner’s Report 8
Statement of Financial Actvites 9
Balance Sheet 10
Notes to the Financial Statements 11

CYSTIC FIBROSIS CARE

REFERENCE AND ADMINISTRATION DETAILS OF THE CHARITY, ITS TRUSTEES AND ADVISORS for the 12 months ended 30 November 2024

Charity Registration Number: 1162445

Trustees: Mr C York (Chairman) Mrs S York Mr M Rose Mrs C J Sunley Principal Address: Westgarth House Snape Bedale North Yorkshire DL8 2TJ Bankers: HSBC 189 High Street Northallerton DL7 8LG Independent Examiner: Suzanne Bolton, FCA Streamline Accountants Unit 5 Battalion Court Catterick Catterick Garrison DL9 4QN

CYSTIC FIBROSIS CARE

TRUSTEES’ ANNUAL REPORT

for the 12 months ended 30 November 2024

The Trustees present their annual report and the financial statements of the charity for the year ended 30 November 2024. The financial statements have been prepared in accordance with the accounting policies set out on pages 11 and 12 and comply with the Charity's trust deed, 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), as updated by Update Bulletin 1.

Structure, Governance and Management

Governing Document

Cystic Fibrosis Care is a Charitable Incorporated Organisation (CIO) which was registered with the Charity Commission on 29 June 2015. The Charity is governed by its constitution, dated 23 March 2015.

Recruitment and Appointment of Trustees

It is the policy of the Charity to recruit persons who have the skills, knowledge and experience which will assist in the management and promotion of the Charity.

The Trustees delegate the day to day running and responsibility of the Charity to the executive director Patricia Kilpatrick.

Objectves and Actvites

The Cystic Fibrosis Care Charity is a registered charity, which was established in 2015. The Charity’s objects are to improve the quality of life for those living with Cystic Fibrosis by providing emotional support and counselling as well as vital medical items and exercise equipment to individuals and Specialist CF Units, and by providing grants for welfare and hospital expenses. Training for both practitioner nurses to become Specialist CF nurses and adults CF patients over 21 are offered education and vocation grants to fund fees and student living costs.

The Trustees confirm that in exercising their duties they have had due regard to the guidance on public benefit, published by the Charity Commission.

The Charity has a small team of volunteers who sign a volunteer agreement. They help at events with collections, registration, marshalling and helping with refreshments and give their time freely. They are covered under the Charity’s insurance policy in the event of an accident.

CYSTIC FIBROSIS CARE

Our Mission

The vision of the Charity is to create a world where those with Cystic Fibrosis can access the care that they need to improve the quality of their life and minimise their daily struggle.

Breathing is something we take for granted, but for those with Cystic Fibrosis the reality is very different. Cystic Fibrosis (CF) is a life-shortening, life limiting, inherited disease affecting over 11,200 people in the UK. One person in 25 carries the faulty CF gene, usually without being aware. This equates to over two million people in the UK. If two carriers have a baby, there is a one in four chance of their child having Cystic Fibrosis. CF affects the internal organs, especially the lungs and digestive system, clogging them with thick sticky mucus making it hard to breathe and digest food.

Many people with CF have to work very hard to keep their lungs healthy. They must eat 50% more calories every day, they need daily physiotherapy, and require invasive medical treatment, spending a great deal of time in hospital. A transplant for those with severe lung disease is often the only option, if indeed it is available. Treatments to control the symptoms are improving, however the average life expectancy is still in the late 40’s and there is no cure.

The nature and treatment of the disease interferes with day-to-day life and the demands of coping with the symptoms and treatments can cause massive financial issues for many patients and families. A shortened life span and frequent hospitalisation is a constant concern, and it is our mission to support those in their lifelong battle with CF.

Achievements and Performance

The cost of living has continued to impact those with CF and their families especially those on low incomes. Those living with CF incur, on average, additional costs of more than £6,500 a year, due to extra spending on heating, dietary needs, attending medical appointments, home medical equipment and loss of income for adult patients and parents.

During the year we saw an increase in requests for our grants, especially our welfare grant, with referrals from CF Teams around the country for CF families finding themselves in difficulty unable to provide the basic necessities for their families. The increase in living costs with food prices rising approximately 4% and energy costs rising an average 10%, left many families destitute, requiring the extra support CF Care provided, validating the aims of our charity.

A total of individual grants awarded in the year were 112 (Food – 67, Energy – 16, Welfare – 31) amounting to £22,752.

During the year we were delighted with the news from NHS England that the drug Kaftrio has received regulatory approval for children aged 2 to 5 which will have a major impact on CF patients and their families, limiting lung damage and improving daily life.

A new drug Alyftrek has also been approved which is a one pill a day designed to help the CFRT protein, work better, and is much less onerous on the patient’s body than many current medications.

CYSTIC FIBROSIS CARE

During the year the Charity was proud to donate £80,000 to St James Hospital CF Ward, Leeds, for the purchase of a Liver Fibroscanner which monitors the liver and indicates the severity of related liver diseases. We also funded the replacement of patient chairs in the ward (£4,598).

The Charity provided vital Pari E-Flows to Great Ormond Street, Hereford, RVI and Birmingham CF Wards (£12,107) and remote monitoring equipment at the RVI in Newcastle for adult patients which will allow them to track patients’ health remotely using digital equipment enabling timely and proactive care and reducing the need for hospital visits, saving time and the risk of cross infection (£6,536).

Great Ormond Street Children’s Transplant Unit received a grant of £7,950 for a Lung Care Book explaining in simplistic terms the process of such a major life saving operation in a picture book style for children to easily understand.

We funded a nurse training course grant towards the Management of CF in Adults and Children Course fees to improve the knowledge and confidence in the care of those with CF.

Our 2024 Hospital Survey sent to over 200 hospital contacts surveyed the number of staff and patients at each unit asking how many patients were using Kaftrio and how could we help their patients and nursing teams improve their patient services. The result of this Survey will direct the future decisions of the Charity.

The Charity is forever grateful for the volunteers who either attend the various events organised by the Charity or gather funds through events of their own. This source of income is invaluable as it not only provides funds but demonstrates the understanding and compassion for the CF community.

Financial Review

Income rose in the year to £230,044 (2023 £177,420) primarily due to £49,700 received from the Yorkshire Clay Day Event (2023 £nil). This allowed for an increase in grants to hospitals and individuals which totalled £133,092 (2023: £58,028) and included a grant to St James Hospital, Leeds, for £80,000 towards a new Fibroscanner. Other expenditure continued to be tightly controlled leaving unrestricted funds held at the end of the year of £426,078 (2023: £398,669)

Reserves Policy

The Charity retains the unrestricted reserve to provide sufficient resources to enable the Charity to fund its activities. The level of reserves is monitored and regularly reviewed by the Trustees.

Risk Management

The Trustees consider and review the major risks to which the Charity is exposed on a regular basis. They establish systems and procedures to manage these risks to an acceptable level. In particular, they scrutinise financial risks relating to its reliance on legacies, donations and gifts to cover the costs of the services it provides.

CYSTIC FIBROSIS CARE

Plans for Future Periods

We continue to live in challenging times, with high rates of inflation affecting the most vulnerable and it is vital that we continue to support these families with individual grants towards their living costs.

We will continue to work with the medical and social welfare teams to forge good relationships with each hospital so we can work together to provide the most effective support to benefit their patients. Internally our priority is to develop the organisation to be more efficient, resilient, and responsible so that we can continue to support the CF community and be able to provide vital medical equipment for the Specialist CF Units.

We look forward to making progress in 2025 and beyond to keep on supporting the most vulnerable when there is no other help available.

Statement of Trustees' Responsibilities

The Trustees are responsible for preparing the Trustees' Annual Report and the Financial Statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Principles). The law applicable to charities in England and Wales 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 that charity for that year. In preparing those financial statements the trustees are required to:

Approved by the Trustees and signed on their behalf on 2025 by:

Mr C York Chairman

INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES OF CYSTIC FIBROSIS CARE

for the 12 months ended 30 November 2024

I report on the accounts of the Charity for the period ended 30 November 2024, which are set out on pages 8 to 13.

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 period under section 144 of the Charities Act 2011 (the Charities Act) and that an independent examination is needed.

It is my responsibility to:

Basis of independent examiner's report

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 matter has come to my attention:

have not been met; or

Suzanne Bolton FCA Streamline Accountants 5 Battalion Court Colburn Business Park DL9 4QN

2025

STATEMENT of FINANCIAL ACTIVITIES

for the 12 months ended 30 November 2024

2024 2023 2024 2023
Notes Unrestricted Restricted Unrestricted Restricted
£ £ £ £
INCOMING RESOURCES
Income and endowments from:
Donatons and legacies 2 57,586 - 71,472 -
Other trading actvites 3 154,752 - 102,130 -
Gain on Investments 11,275 - 861 -
Interest 6,431 - 2,957 -
-------------- -------------- ---------------- --------------
Total Income 230,044 - 177,420 -
========= ========= ========== =========
RESOURCES EXPENDED
Expenditure on:
Raising funds 4 23,597 - 28,751 -
Charitable actvites 5 120,321 12,770 38,028 20,000
Other 6 58,717 - 57,447 -
-------------- -------------- -------------- ---------------
Total Expenditure 202,635 12,770 124,226 20,000
========= ========= ========= =========
Net Income / movement in funds
27,409 ( 12,770 ) 53,194 ( 20,000 )
Total Funds brought forward 398,669 12,770 345,475 32,770
-------------- -------------- ------------- ---------------
Total Funds carried forward 426,078 - 398,669 12,770
========= ========= ======== =========

CYSTIC FIBROSIS CARE

BALANCE SHEET as at 30 November 2024

2024 2023
Notes £ £
Fixed Assets 8 308 616
Investments 356,453 265,154
--------------- --------------
356,761 265,770
========= ========
Current Assets
Prepayments & accrued income 9 - 1,000
Cash at bank & in hand 104,143 154,055
------------- --------------
Total Current Assets 104,143 155,055
Creditors: amounts due within one year ( 34,826 ) ( 9,386 )
------------- -------------
Net Current Assets 69,317 145,669
========= ========
Total Net Assets 426,078 411,439
======== ========
FUNDS OF THE CHARITY
Unrestricted Funds 426,078 398,669
Restricted Funds - 12,770
------------ ------------
Total Funds 426,078 411,439
======= =======

The financial statements were approved by the Board of Trustees on 2025 and signed on its behalf by:

Mr C York Chairman

CYSTIC FIBROSIS CARE

NOTES TO THE FINANCIAL STATEMENTS for the 12 months ended 30 November 2024

1 ACCOUNTING POLICIES

Basis of accountng

The 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 the accounts.

The financial statements have been prepared in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities (SORP) 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, as updated by Update Bulletin 1, and with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and with the Charities Act 2011.

The financial statements have been prepared to give a true and fair view of the state of affairs of the Charity as at the end of the financial period and of the net income or expenditure of the Charity for the financial period, and the accounting policies adopted are those outlined below.

Cystic Fibrosis Care constitutes a public benefit entity as defined by FRS 102.

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

Income

Income is recognised when the Charity has entitlement to the funds, any performance conditions attached to the items of income have been met, it is probable that income will be received, and the amount can be measured reliably.

The Charity ensures that restricted funds are applied in accordance with the wishes of the Donor.

Ofsetng

There has been no offsetting of assets and liabilities or income and expenditure, unless required or permitted by the FRS 102 SORP or FRS 102.

Depreciaton

Fixed assets are depreciated over their useful lives, less any residual value, on a straight-line basis. The depreciation rates are:

Computer – software 100% Computer – hardware 25%

Volunteer help

The value of any voluntary help received is not included in the accounts but is described in the Trustees’ annual report.

CYSTIC FIBROSIS CARE

NOTES TO THE FINANCIAL STATEMENTS for the 12 months ended 30 November 2024 (continued)

Expenditure

Expenditure is recognised once there is a legal or constructive obligation committing the Charity to that expenditure, it is probable that settlement will be required and the amount of the obligation can be measured reliably. Expenditure includes irrecoverable VAT.

Creditors

Creditors are recognised at their settlement amount after allowing for any trade discounts due.

2 DONATIONS AND LEGACIES
2024 2023
£ £
Donatons and gifs – unrestricted 57,586 71,472
Donatons and gifs - restricted - -
----------- -----------
57,586 71,472
======= =======
3 INCOME FROM OTHER TRADING ACTIVITIES
2024 2023
£ £
Income from events 154,752 102,130
======== ========
4 OTHER FUNDRAISING COSTS
2024 2023
£ £
Cost of events 23,597 28,751
======== ========
5 EXPENDITURE ON CHARITABLE ACTIVITIES
2024 2023
£ £
Grants paid – unrestricted 119,654 37,853
Grants paid – restricted 12,770 20,000
Actvity Packs – unrestricted 667 175
----------- -----------
133,091 58,028
======== ========

CYSTIC FIBROSIS CARE

NOTES TO THE FINANCIAL STATEMENTS for the 12 months ended 30 November 2024 (continued)

6
OTHER COSTS
2024 2023
£ £
Wages and salaries 53,641 50,300
Advertsing 240 1,669
Printng, postage, and ofce expenses 2,400 3,077
Travel and subsistence 1,478 1,184
Insurance 571 830
Independent examiner’s fee 150 150
Accountancy Fees 237 237
---------- ----------
58,717 57,447
====== =======
7
STAFF COSTS
2024 2023
£ £
Wages and salaries 53,641 50,300
====== ======

The average number of employees during the period was 3 (2021: 2). No employee had emoluments in excess of £60,000.

8 FIXED ASSETS

8
FIXED ASSETS
2024 2023
£ £
Computers NBV b/f 616 924
Additons - -
Depreciaton ( 308 ) ( 308 )
----------- -----------
Computers NBV c/f 308 616
Investments 356,453 265,154
----------- -----------
356,761 265,770
======= =======

CYSTIC FIBROSIS CARE

NOTES TO THE FINANCIAL STATEMENTS for the 12 months ended 30 November 2024 (continued)

9 DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
2024 2023
£ £
Prepayments and accrued income
- 1,000
======= =======
10 CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
2024 2023
£ £
Trade creditors - -
Taxaton and social security
266 1,380
Accruals and deferred income
34,560 8,006
---------- ---------
34,826 8,270
====== ======

11 TRANSACTIONS WITH TRUSTEES AND RELATED PARTIES

The Trustees received no remuneration for their services to the Charity during the year (2023: nil).