||||||||| |---|---|---|---|---|---|---|---| |**Trustees' Annual Report**|||||**for theperiod**||| |**From**|Period start date|||**To**|Period end date||| ||Day
13|Month
04|Year
2022||Day
05|Month
04|Year
2023| ## Section A Reference and administration details **Charity name** Aortic Dissection Awareness UK & Ireland **Other names charity is known by** THINK AORTA is a registered trademark of the charity **Registered charity number (if any)** 1198617 **Charity's principal address** 5 Newsham Road WOKING Surrey **Postcode GU21 3LA** ## **Names of the charity trustees who manage the charity** |1
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20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year **|**Name of person (or body) entitled**
**to appoint trustee (ifany)**| |---|---|---|---|---| ||Gareth Owens|Chair||Members| ||Haleema Saadia|Vice-Chair||Members| ||Clare Payne|Secretary||Members| ||Karen Cunningham|Assistant Secretary||Members| ||Eileen Haxby|Treasurer||Members| ||Peter Hill|Assistant Treasurer||Members| ||Dan Burgess|Founder||Members| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| **Names of the trustees for the charity, if any, (for example, any custodian trustees)** **Name Dates acted if not for whole year** ## **Names and addresses of advisers (Optional information)** |**Names and addresses of advisers (Optional information)**|**Names and addresses of advisers (Optional information)**|**Names and addresses of advisers (Optional information)**| |---|---|---| |**Type of adviser**
**Name**
**Address**||| |Medical Advisor|Dr. Emma Redfern|Emergency Department, Bristol Royal Infirmary, Upper
Maudlin St, Bristol BS2 8HW| |Medical Advisor|Mr. Geoff Tsang|Cardiothoracic Surgery, Southampton General Hospital,
Tremona Rd, Southampton SO16 6YD| |||| |||| |**Name of chief executive or names of senior staff members (Optional information)**||| |No staff||| ## **Section B Structure, governance and management** ## **Description of the charity’s trusts** |Type of governing document
(eg. trust deed, constitution)
How the charity is constituted
(eg. trust, association, company)
Trustee selection methods
(eg. appointed by, elected by)
**Additional governance issues**
You**may choose**to include
additional information, where
relevant, about:
•policies and procedures
adopted for the induction and
training of trustees;
•the charity’s organisational
structure and any wider
network with which the
charity works;
•relationship with any related
parties;
•trustees’ consideration of
major risks and the system
and procedures to manage
them.|
Constitution adopted on 13thApril 2022| |---|---| ||Charitable Incorporated Organisation| ||Trustees require nomination by two members and are elected by a vote of
members at the AGM| ||**(Optional information)**| ||
**Strategic relationships**:
The charity enjoys strong, mutually beneficial working relationships with the
following third party organisations:
The Royal College of Emergency Medicine (RCEM)
The Royal College of Radiologists (RCR)
The Society for Cardiothoracic Surgery in Great Britain & Ireland (SCTS)
The Vascular Society of Great Britain & Ireland (VSGBI)
The Intensive Care Society (ICS)
Heart Research UK (HRUK)
RCEM, RCR, SCTS, VSGBI and HRUK all partner with and endorse the
charity’s lifesaving THINK AORTA campaign and materials.
SCTS, VSGBI and ICS all endorse the charity’s patient handbook ‘Aortic
Dissection: The Patient Guide’.| The charity also partners with a leading manufacturer of Aortic grafts, Terumo Aortic (Vascutek Ltd), who sponsor our annual conference ‘Aortic Dissection Awareness Day UK’ and distribute our handbook ‘Aortic Dissection: The Patient Guide’. ## **Risks** The Trustees identified the following strategic risks and established mitigation plans for them: 1. That the charity may be affected by a general drop in charitable giving because of the COVID-19 pandemic and the economic recession. The Trustees took a cautious approach to expenditure during the year until the impact of this became clear. However, this risk has not materialised. The charity’s income continues an upward trend, enabling the Trustees to commission and fund more activities and projects for the direct benefit of patients. 2. That the charity’s reliance on Aortic Dissection patients and relatives to lead the charity and to undertake its work may result in resourcing challenges, due to Trustees and volunteers having to focus on personal health or family issues at short notice. The Trustees adopted mitigation strategy of “buddying-up” two or more individuals around each role has proven successful in mitigating this risk whenever it has arisen. 3. That the activities of a competing charity set-up by three disaffected former members – the Aortic Dissection Charitable Trust – may confuse stakeholders and adversely affect the charity’s income, activities, and reputation. The Trustees adopted a mitigation strategy of clear differentiation as ‘The Patient Charity’; regular communication with stakeholders about the patient charity’s unique aims, values, and patient leadership; and a focus on the patient charity’s own objectives and mission, rather than being drawn into unhelpful competition with another charity. 4. That information provided by the charity may be the subject of a legal challenge by a patient or relative. This risk has not materialised. The charity’s support group does not provide medical advice and makes this clear in all its interactions with the public. Further mitigation of this risk is provided by the charity having a board of appointed professional Medical Advisors and a network of relationships with the medical and surgical Royal Colleges and professional societies, who review and endorse all the charity’s publications. The Trustees also have appropriate expert legal advice and insurance to cover any legal challenges in place. ## **Section C Objectives and activities** In summary, the objects of the charity are, for the public benefit: **Summary of the objects of the charity set out in its governing document** - To preserve and protect those suffering from or at risk of Aortic Dissection or associated conditions. - • To provide the voice for patients, survivors, their families (including bereaved families) and those at risk of Aortic Dissection within the UK and Ireland. - • To campaign and raise awareness of Aortic Dissection, its diagnosis and treatment and work with the medical profession to improve patient outcomes. - To provide support to patients, survivors, their families (including bereaved families) and those at risk of Aortic Dissection. - To encourage and support research into Aortic Dissection, including but not limited to causes, treatment, and the dissemination of results. - To provide practical support to and collaborate with charitable and non-charitable organisations supporting patients, their families (including bereaved families) and those at risk of Aortic Dissection, and the medical and research professions, in other countries. ||•
To provide practical support to and collaborate with charitable and
non-charitable organisations supporting patients, their families
(including bereaved families) and those at risk of Aortic Dissection,
and the medical and research professions, in other countries.| |---|---| ||In planning and carrying-out the charity’s activities for the year, the| ||Trustees kept in mind the Charity Commission’s guidance on public benefit| ||and had regard to this guidance in our decision-making, especially in| ||decisions about where to spend the charity’s money. The charity’s main| ||activities are as follows:| ||•
Supporting patients and families affected by Aortic Dissection.| |**Summary of the main**|•
Raising awareness of Aortic Dissection generally.| |**activities undertaken for the**
**public benefit in relation to**|•
Influencing the healthcare system to improve patient care.| |**these objects (include within**
**this section the statutory**|•
Partnering in research to improve care and outcomes.| |**declaration that trustees**
**have had regard to the**
**guidance issued by the**
**Charity Commission on**
**public benefit)**|These activities benefit everyone affected by Aortic Dissection in the past,
present, and future, by providing a supportive, informative community to
which they can belong; increasing awareness of the disease among the
public at risk and in the medical profession; improving diagnosis and care
within the healthcare system; and enabling high-quality, patient-centred| ||research to improve care and outcomes in the future. We welcome as| ||members everyone who is affected by or interested in Aortic Dissection in| ||the UK & Ireland, regardless of personal background, faith, gender,| ||politics, or personal circumstances.| ||The actions undertaken to support these activities are detailed in “Section| ||D – Achievements and performance” of this report.| ## **Additional details of objectives and activities (Optional information)** ## **Volunteering** You **may choose** to include further statements, where relevant, about: The totality of the charity’s work is undertaken by volunteers. Our volunteer resourcing model enables people affected by Aortic Dissection to fulfil meaningful roles and ‘give back’ to the community by helping others. Our bereaved volunteers tell us that involvement in the charity’s work helps them feel that something positive is happening following their loved one’s death. Our professional Medical Advisors also give their time voluntarily and tell us that it is a privilege to work with our patients. - policy on grantmaking; - policy programme related investment; - contribution made by volunteers. Section D Achievements and performance Section D Achievements and erformance p **Summary of the main Patient/Family Support achievements of the charity during the year** Membership of the charity grew by 35% during the year, to more than 1,000 members across the UK & Ireland. Our ‘AD Buddies’ peer support group for patients and their families saw a similar increase and the private online support group is busy every day with members asking and answering questions about Aortic Dissection. During the year, we established two additional peer support groups catering for the specific needs of bereaved relatives and caregivers. The charity published the definitive handbook to the condition “Aortic Dissection: The Patient Guide” and made a charitable commitment to provide, in perpetuity, a free copy to every patient in the UK & Ireland via their treating hospital. More than 3,000 copies were distributed during the first year. We also highlighted the underdiagnosed problem of Aortic Dissection during pregnancy and published a booklet “Planning Pregnancy with Aortic Disease”, written by a patient who had survived this experience and a leading maternal cardiologist. **Disease Awareness** The Trustees awarded the hosting of our annual conference “Aortic Dissection Awareness Day UK” to the Wellcome Centre for Interventional Surgical Sciences at University College London, in recognition of their ground-breaking research in the field. More than 120 patients, relatives, clinicians, and researchers attended the conference, which was held at the Headquarters of the British Medical Association in central London. The charity completed a post-COVID refresh of our THINK AORTA poster campaign, in partnership with Heart Research UK, which resulted in posters being sent to every A&E Department in the UK & Ireland. One of our speakers at the AD Awareness Day UK 2022 conference was a patient whose life was saved as a result of the charity’s THINK AORTA campaign. The charity also extended its reach into prevention of Aortic Dissection, with the launch of the public THINK AORTA, THINK FAMILY campaign, which addresses the often, genetic nature of the disease and highlighting the need for improvements in familial genetic testing. **Influencing/Improving Care** The charity provides the patient voice on the NHS England Acute Aortic Dissection Toolkit Working Group. Since the toolkit was launched for the NHS England Regions to implement in April 2022, we have supported each Region with the offer of a team of local patients and a tailored support package for improving the acute Aortic Dissection patient pathway. To date, five of the seven NHS England Regions have taken advantage of this support. ## Section D Achievements and erformance p The charity also provides a Patient & Public Voice Partner to sit on the NHS England Vascular Clinical Reference Group, which advises on the provision of vascular services nationally. The charity made submissions proposing a focus on the prevention of Aortic Dissection as part of the UK Parliament Health & Social Care Committee Inquiry into Prevention in Healthcare. ## **Research** The charity’s Research Team met every second month to discuss proposals and partnerships in the field of Aortic Dissection and consider and respond to requests for patient involvement and advice. The strategic DECIDE-TAD research partnership that the charity co-leads with the BHF Cardiovascular Sciences Research Centre at the University of Leicester completed its first phase. The initial results were presented at the Society for Cardiothoracic Surgery Annual Meeting in Birmingham. Papers are in preparation for publication in leading journals. This multiyear research programme is leading towards Decision Support Tools and professional guidance/pathways that will enable screening of the first- and second-degree relatives of people who have an Aortic Dissection. The charity also completed its work with Barts Health NHS Trust on the CardiacCOVID study, which was published in the European Journal of Cardiovascular Nursing. The charity also completed its work in a multi-centre, multidisciplinary research partnership led by the University of Bristol – the TRAVERSING study - which reached a consensus on the care of acute Aortic Dissection patients during transfer to specialist centres. Publication of the consensus guideline is expected during 2023. ## **Recognition** The charity was pleased to be invited to speak at several national events for medical professionals during the year, including the annual conferences of the Society for Cardiothoracic Surgery in Belfast, the Vascular Society in Brighton, and the British Cardiovascular Society in Manchester. We also put together a highly successful patient-interactive session for the prestigious London Aorta conference. The work of the charity has also been recognised with the award of the title “Best Specialist Patient Support Charity – UK – 2023” in the international non-profit organisation awards. ## **Section E Financial review** |**Brief statement of the**
**charity’s policy on reserves**
**Details of any funds**
**materially in deficit**|The Charity set up without a reserves policy.
During the year, the trustees agreed to retain the unspent amount of the
travel bursary funding set aside for Aortic Dissection Awareness Day 2022
as a designated reserve for future events. This balance is a Designated
Fund as of 5thApril 2023.
The trustees have also acknowledged that the policy may require further
review to set aside the cost of reprinting current publications during the
budgeting process.| |---|---| ||None| ## **Further financial review details (Optional information)** - The principal sources of income for the period under review are: - You **may choose** to include • Direct donations from members of the charity or the public through - additional information, where a variety of means. - relevant about: • Sponsorship support towards the costs of the annual Aortic - • the charity’s principal Dissection Awareness Day UK conference from Terumo Aortic - sources of funds (including (Vascutek Limited). - any fundraising); - • how expenditure has Expenditure supports the key objectives of the charity, primarily covering supported the key the following: objectives of the charity; • Cost of Aortic Dissection Awareness Day UK 2022. - • investment policy and • The cost of producing the publications “Aortic Dissection: The objectives including any Patient Guide” and “Planning Pregnancy with Aortic Disease”. • - ethical investment policy Contribution towards the refresh of the THINK AORTA poster adopted. campaign. • Travel and other expenses associated with attendance at various supported events. - • A limited range of merchandise to support and promote the charity. - • Charity running costs, including IT costs, registration fees etc. ## **Section F Other optional information** ## **Section G Declaration** **The trustees declare that they have approved the trustees’ report above.** **Signed on behalf of the charity’s trustees** |**Signature(s)**
**Full name(s)**Gareth Owens
Clare Payne
**Position (e.g., Secretary, Chair,**
**etc)**
Chair
Secretary
**Date**05/01/24|||||| |---|---|---|---|---|---| ||||Clare Payne||| |||
Chair||Secretary|| |||05/01/24|||| ||**Charity Name**|**Charity Name**|**Charity Name**|**Charity Name**|**Charity Name**|**No (ifany)**|**No (ifany)**||**CC16a**| |---|---|---|---|---|---|---|---|---|---| ||**Aortic Dissection Awareness UK & Ireland**|||||**1198617**|||| ||**Receipts andpayments accounts**||||||||| ||**For the period**
**from**||Period start date||**To**||Period end date||| ||||**13th April 2022**||||**5th April 2023**||| ||||||||||| |**Section A Receipts and payments**|||||||||| ||**Unrestricted**
**funds**||**Restricted**
**funds**||**Endowment**
**funds**||**Total funds**||**Last year**| ||**to the nearest**
**£**||**to the nearest £**||**to the nearest £**||**to the nearest £**||**to the nearest £**| |**A1 Receipts**|||||||||| |Donations|**32,982**||**-**||**-**||**32,982**||**-**| |AD Day2022 Sponsorshipetc.|**15,000**||**3,800**||**-**||**18,800**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| |**_Sub total_**_(Gross income for_
_AR)_|**47,982**||**3,800**||**-**||**51,782**||**-**| ||||||||||| |**A2 Asset and investment**
**sales, (see table).**|||||||||| ||**-**||**-**||**-**||**-**||| ||**-**||**-**||**-**||**-**||**-**| |**_Sub total_**|**-**||**-**||**-**||**-**||**-**| ||||||||||| |**_Total receipts_**|**47,982**||**3,800**||**-**||**51,782**||**-**| ||||||||||| |**A3 Payments**|||||||||| |AD Day2022|**13,689**||**2,638**||**-**||**16,327**||**-**| |Publications|**1,726**||**-**||**-**||**1,726**||**-**| |Other|**7,106**||**-**||**-**||**7,106**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| |**_Sub total_ **|**22,521**||**2,638**||**-**||**25,159**||**-**| ||||||||||| |**A4 Asset and investment**
**purchases, (see table)**|||||||||| ||**-**||**-**||**-**||**-**||| ||**-**||**-**||**-**||**-**||| |**_Sub total_ **|**-**||**-**||**-**||**-**||**-**| ||||||||||| |**_Totalpayments_**|**22,521**||**2,638**||**-**||**25,159**||**-**| ||||||||||| |**_Net of receipts/(payments)_**|**25,461**||**1,162**||**-**||**26,623**||**-**| |**A5 Transfers between funds**|**-**||**-**||**-**||**-**||**-**| |**A6 Cash funds lastyear end**|**1,663**||**-**||**-**||**1,663**||**-**| |**_Cash funds thisyear end_**|**27,124**||**1,162**||**-**||**28,286**||**-**| ||||||||||| ||||||||||| **Section B Statement of assets and liabilities at the end of the period** |**Categories**|**Details**|**Details**|**Details**||**Unrestricted**
**funds**||**Restricted**
**funds**||**Endowment**
**funds**| |---|---|---|---|---|---|---|---|---|---| ||||||**to nearest £**||**to nearest £**||**to nearest £**| |**B1 Cash funds**|Cash at Bank||||**27,124**||**1,162**||**-**| ||||||**-**||**-**||**-**| ||||||**-**||**-**||**-**| ||**_Total cash funds_**||||**27,124**||**1,162**||**-**| ||(agree balances w ith receipts and payments
account(s))||||OK||||OK| ||||||**Unrestricted**
**funds**||**Restricted**
**funds**||**Endowment**
**funds**| ||**Details**||||**to nearest £**||**to nearest £**||**to nearest £**| |**B2 Other monetary assets**|||||**-**||**-**||**-**| ||||||**-**||**-**||**-**| ||||||**-**||**-**||**-**| ||||||**-**||**-**||**-**| ||||||**-**||**-**||**-**| ||||||**-**||**-**||**-**| ||||||||||| ||**Details**||||**Fund to which**
**asset belongs**||**Cost (optional)**||**Current value**
**(optional)**| |**B3 Investment assets**|||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||||| ||**Details**||||**Fund to which**
**asset belongs**||**Cost (optional)**||**Current value**
**(optional)**| |**B4 Assets retained for the**
**charity’s own use**|||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||||| ||**Details**||||**Fund to which**
**liability relates**||**Amount due**
**(optional)**||**When due**
**(optional)**| |**B5 Liabilities**|||||||**-**||| ||||||||**-**||| ||||||||**-**||| ||||||||**-**||| ||||||||**-**||| ||||||||||| |Signed by one or two trustees on
behalf of all the trustees|Signature||||Print Name||||Date of
approval| ||||||GarethOwens||||31/10/2023| ||||||ClarePayne||||31/10/2023| ||||||||||| ## **Independent examiner’s report to the trustees of Aortic Dissection Awareness UK & Ireland (registered charity number 1198617 England and Wales)** I report to the trustees on my examination of the accounts of Aortic Dissection Awareness UK & Ireland (the Trust) for the year ended 5[th] April 2023. ## **Responsibilities and basis of report** As the charity trustees of the Trust 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 Trust’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 the Trust as required by section 130 of the Act; or 2. the accounts do not accord with those records. 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. Signed: Name: Nicola Mcmeekin Previous FCCA membership, now lapsed. Address: 7 Kilmardinny Grove, Bearsden, East Dunbartonshire, G61 3NY Date: 2 February 2024