REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021
REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021
Registered Charitable Incorporated Organisation (registered no.1161518) Registered Address: c/o 4 Buckland Road, London, E10 6QS Trustees: Maria Piggin, Neil Rowntree and Alex Naylor
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REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021
CONTENTS
| Page | |
|---|---|
| Trustees report for the year ended 31 March | |
| 2021 | 3 |
| Annex A: Form CC16a - Receipts and Payments Accounts | |
| for PNH Support for the year ended 31 March 2021 | 6 |
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REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021
REPORT OF THE TRUSTEES (for the year ended 31 March 2021)
The trustees present this report and receipts and payments accounts for the year ended 31 March 2021 The current trustees are set out on page 1.
Structure, Governance and Management
PNH Support is registered as a Charitable Incorporated Organisation (CIO) and is managed by four trustees. Nelson Ekwedike retired as longest serving trustee as required by paragraph 13(1) of the Constitution on 16 May 2020. The trustees operate within PNH Support’s constitution dated 30 April 2015 (the “Constitution”) amended by member resolution on 16 May 2020 to permit the AGM to be held virtually as a result of COVID 19. The Constitution is an ‘Association’ model and has voting members other than its trustees.
PNH Support currently has 131 members. Membership is open to patients (and their families/carers) living with Paroxysmal Nocturnal Haemoglobinuria (“PNH”) living in England, Wales and Northern Ireland.
The trustees have been appointed to ensure that the board has an appropriate level of skills to enable PNH Support to achieve its charitable objectives.
Objectives and Activities
The objects of PNH Support (as set out in its Constitution) are as follows:
-
To promote, protect and preserve the physical and mental health of those diagnosed with Paroxysmal Nocturnal Haemoglobinuria who reside in England, Wales and Northern Ireland (either permanently or temporarily) through the provision of support, education, advocacy and practical advice.
-
To advance the education of patients with PNH who reside in England, Wales and Northern Ireland, in particular but not exclusively by the provision of advice and a point of contact for newly diagnosed PNH patients, in England, Wales and Northern Ireland.
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REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021
PNH Support undertook the following activities during the year ended 31 March 2021 in order to further its charitable purposes for the public benefit:
- maintained a community Facebook Page – in order to raise awareness of the -
disease and include relevant updates - https://www.facebook.com/PNH Support-126655011000361/
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maintained and moderated a closed Facebook page with 242 members open to patients and their families living in the United Kingdom to disseminate news and events and facilitate discussion and support between members of the closed group about living with PNH
-
maintained a Twitter handle @PNHSupport in order to raise awareness of the disease and the patient group and disseminate information.
-
maintained and updated the website (www.pnhuk.org) in order to provide information and disseminate news and events relevant to the PNH community.
-
provided support to PNH patients including by directing them to the appropriate information sources or persons (including in relation to COVID 19)
-
produced a six monthly newsletter for members.
-
held a virtual AGM (due to COVID) on 16 May 2020 attended by 17 people.
-
held regular patient and family meetings over Zoom from June 2020 to March 2021
-
attended the virtual European Haematology Association Congress in June 2020
-
advocated on behalf of members with stakeholders such as Healthcare at Home, the PNH National Service, the NHS, and NHS England
-
participated in the National Institute for Health and Care Excellence (NICE) successful Single Technology Appraisal of ravulizumab (Ultomiris) for payment including undertaking a patient and carer survey of 75 people
-
participated in the NICE Single Technology Appraisal for pegcetacoplan (ongoing) including undertaking a patient and carer survey
-
participated in a NICE scientific advice process for a confidential new therapy for PNH
-
engaged with pharmaceutical companies developing new treatments for PNH with regard to the involvement of patients in the research and development process
-
member of the PNH Global Alliance comprising 8 PNH global patient organisations from 7 countries with the aim of collaboration and knowledge sharing to benefit our respective communities
-
represented bone marrow failure patients in the European Reference Network for rare haematological disorders (EuroBloodNet).
-
member of the “Together for Healthy Marrow Alliance” for rare bone marrow failure disorder patient organisations in the UK with the aim of collaboration and knowledge sharing to benefit our respective communities.
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REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021
Financial Review
PNH Support received the following receipts in the year:
Donations £376.70 Honoraria/consultancy fees £2,327.50 Grant funding £299.27
Total £3,003.47
Reserves Policy
The trustees have established reserves that will provide a sustainable level of working capital to ensure continuity of PNH Support, contemporaneous with it achieving its objectives.
Public Benefit Statement
The trustees have complied with their duty to have due regard to the guidance on public benefit published by the Charities Commission in exercising their powers or duties.
Responsibilities of the Trustees for the Preparation of Annual Accounts
PNH Support’s trustees are responsible for the preparation of the accounts and are required to assess whether the audit requirements of s144(2) of the Charities Act 2011 or an independent examination is required.
The trustees are satisfied that PNH Support’s gross income for the period is less that the £25,000 threshold and as such, there is no requirement for an audit or an independent examiner’s statement.
On behalf of the Trustees
…………………………… Maria Piggin Chair PNH Support
………………………….. 3 July 2021 Date:
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REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021
ANNEX A
Form CC16a Receipts and Payments Accounts for PNH Support for the year ended 31 March 2021
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PNH Support No (if any) Receipts and payments accounts
CC16a
For the period Period start date Period end date To from 01/04/2020 31/03/2021
Section A Receipts and payments
| A1 Receipts | Unrestricted funds to the nearest £ |
Unrestricted funds to the nearest £ |
Restricted funds to the nearest £ |
Restricted funds to the nearest £ |
Endowment funds to the nearest £ |
Endowment funds to the nearest £ |
Total funds to the nearest £ |
Total funds to the nearest £ |
Last year to the nearest £ |
|---|---|---|---|---|---|---|---|---|---|
Alexion Expense Reimbursment |
- | - | - | 7 | |||||
| Christmas Cards-Receipts | - | - | - | 23 | |||||
| Donations | 377 | - | - | 377 | 1,084 | ||||
| Fee for Services / Honoraria | 2,328 | - | - | 2,328 | - | ||||
| Grant Funding for Zoom Licence [Apell | 299 | - | - | 299 | - | ||||
Sub total(Gross income for AR) |
3,003 |
- | - | 3,003 | 1,114 | ||||
| A2 Asset and investment sales, (see table). |
|||||||||
| - | - | ||||||||
| - | - | ||||||||
| Sub total | - | - | |||||||
| Total receipts A3 Payments |
|||||||||
| 1,114 | |||||||||
AGM & Conference |
- | - | - | - | 270 | ||||
| EHA Congress | - | - | - | - | 451 | ||||
| Insurance - Zurich | - | - | - | - | 364 | ||||
| IT Service & Fees | 730 | - | - | 730 | 333 | ||||
| Members & Trustee Travel | - | - | - | - | 236 | ||||
| PNH Global Alliance MembershipFee | 229 | - | - | 229 | - | ||||
| PNH Support Website | - | - | - | - | 98 | ||||
| Postage | 58 | - | - | 58 | 7 | ||||
| RepayFee for Services | - | - | - | - | 300 | ||||
| Regional Patient Meetings | - | - | - | - | 326 | ||||
| Stationary | - | - | - | - | 61 | ||||
| Trustee Expenses | - | - | - | - | 14 | ||||
| **Sub total ** | 1,016 | - | - | 1,016 | 2,460 | ||||
| A4 Asset and investment purchases, (see table) |
|||||||||
| - | |||||||||
| - | |||||||||
| **Sub total ** | - | - | |||||||
| Total payments Net of receipts/(payments) A5 Transfers between funds A6 Cash funds last year end Cash funds this year end |
|||||||||
| 2,460 | |||||||||
| 1,987 | - 1,346 | ||||||||
| - | - | ||||||||
| 7,588 | 8,934 | ||||||||
| 9,576 | 7,588 |
CCXX R1 accounts (SS)
02/07/2021
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Section B Statement of assets and liabilities at the end of the period
| Categories B2 Other monetary assets B3 Investment assets B4 Assets retained for the charity’s own use B5 Liabilities Signed by one or two trustees on behalf of all the trustees B1 Cash funds |
Signature Cash at Bank(HSBC) Details Total cash funds (agree balances with receipts and payments account(s)) Details Details Details Details Apple Air Laptop |
Unrestricted funds Restricted funds to nearest £ to nearest £ 9,576 - - - - - 9,576 - OK OK Unrestricted funds Restricted funds to nearest £ to nearest £ - - Fund to which asset belongs Cost (optional) - Fund to which asset belongs Cost (optional) 891 Fund to which liability relates Amount due (optional) - Print Name Maria Piggin |
Endowment funds to nearest £ |
|---|---|---|---|
| - | |||
| - | |||
| - | |||
| - | |||
| OK | |||
| Endowment funds to nearest £ |
|||
| - | |||
| Current value (optional) |
|||
| - | |||
| Current value (optional) |
|||
| 200 | |||
| When due (optional) |
|||
| Date of approval | |||
| Maria Piggin | / / 2021 03 07 |
||
| / / 2021 |
CCXX R2 accounts (SS)
02/07/2021
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