**Trustees' Annual Report for the period** Period start date Period end date 1 April 2020 31 March 2021 **From To**
## Section A Reference and administration details
**Charity name** CONGENITAL ADRENAL HYPERPLASIA SUPPORT GROUP
**Other names charity is known by** CAH SUPPORT GROUP & LIVING WITH CAH GROUP **Registered charity number (if any)** 1178951 & SCO48814
**Charity's principal address** 27 FIRCROFT, KINGSBURY, TAMWORTH STAFFS **Postcode** B78 2JU
## **Names of the charity trustees who manage the charity**
|1
2
3
4|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year **|**Name of person (or body) entitled**
**to appoint trustee (ifany)**|
|---|---|---|---|---|
||Sue Elford|Chair|||
||Sallyann Blackett|Treasurer|||
||Jess Loveless|Secretary|||
||Kaz Williams|Adult Coordinator|||
||||||
## **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**
|**Type of adviser**|**Name**
**Address**|**Name**
**Address**|
|---|---|---|
|**Medical (children)**|Prof Faisal Ahmed|C/O Glasgow Children’s Hospital|
|**Medical (Adults)**|Dr Helena Gleeson|C/O QE Hospital, Birmingham|
|**Medical (Genetics)**|Dr Trevor Cole|C/O Women’s Hospital, Birmingham|
|**Medical (Surgery)**|Mr Liam McCarthy|C/O Birmingham Children’s Hospital|
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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
The Congenital Adrenal Hyperplasia support group is covered by a constitution
We are a Charitable Incorporated Organisation
- (eg. trust, association, company)
Trustee selection methods
- (eg. appointed by, elected by)
Trustees are elected by the membership usually during an Annual General Meeting but there is also provision for a direct election by post or online. The constitution allows for current trustees to appoint directly for a period of under a year
## **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.
The support group has developed policies to support the efficient operation of the group.
From an administration basis we have an expenses policy for trustee claims, a reserves policy to safeguard our funds and funding assessment criteria for interactions with research grant proposals. To safeguard those we interact with there is a safeguarding policy and a trustee code of conduct.
The current structure is based on a core team with the ability to request support from members where needed, such as logistics for local meetings. To keep operations effective and least cost we are using a cloud based online platform for file storage and communication.
- The charity interacts with other charities in a similar rare condition space on a goodwill basis without any formal interaction or legal commitment.
Risk assessment has been targeted towards financial requirements and public events such as the conference. We have ensured that our insurance covers these areas.
## **Section C Objectives and activities**
The objects of the CIO are:
For public benefit,
to preserve and protect the health of patients with Congenital Adrenal Hyperplasia (CAH)
**Summary of the objects of the charity set out in its** by providing support and information to individuals with CAH, their **governing document** families and carers,
raising awareness among the public and the medical profession and advancing care/treatment of CAH by funding research into CAH, the useful results of which will be disseminated for the public benefit.
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**Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)**
The support group main activities are publication of information and support for those with CAH and their families. So that members of the public who may be suffering from Congenital Adrenal Hyperplasia or may have children/relatives/friends who may suffer from the condition, be made aware of Congenital Adrenal Hyperplasia Support Group and how it can help them we have a website that is publicly available. We also work closely with all endocrine centres who have information leaflets for the support group available. We regularly refresh these by mailshot. We also have stands at endocrine conferences so that we can raise awareness of the group and our services. One/more trustees attend events and conferences which are run by other organisations set-up with the purpose of bringing families where there is a child with CAH and adults with CAH together as well as those with other conditions which come under the DSD (differences of sexual development) definition, together. We extend our networks and highlight the work we do at these events as well as giving talks/ attending specialist medical events to raise awareness further of our organisation to pass the information to families/ adults they may be working with. The support group currently holds a bi-ennial formal conference. This is advertised widely through hospitals, medical professionals, our membership and the website. This is open access and we have medical professionals who kindly give up their time to support through talks and questions. We hold informal meetings in local areas once or twice a year that are also freely available, supported by one or two medical professionals and those with CAH or families managing the condition who can talk about their experiences. We also provide adult only meetings for those with CAH to speak more freely about how they manage their condition. This is facilitated by our adult support advisor. In all cases we advertise to our membership, through the medical centres and on our website. We also provide individual support through phone calls, emails and social media if needed and as appropriate.
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## **Additional details of objectives and activities**
The support group has an assessment policy that Trustees can use to assess any grant requests. This is aimed at ensuring the use of funds is targeted at areas that support the in-year business plan and deliver maximum benefit to our members and those with CAH in general.
We do not have a current policy for investment, however policies are reviewed annually at the Trustee meeting following the AGM.
You **may choose** to include further statements, where relevant, about:
- policy on grantmaking;
Volunteers are very much at the heart of our operation, and the support group would not function without their help. Contributions for local meeting administration, newsletter articles and editing are all essential support. In essence the Trustees are also volunteers as there are no paid roles.
- policy programme related investment;
- contribution made by volunteers.
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Section D Achievements and performance
**Summary of the main achievements of the charity during the year**
Meetings have been difficult over the past year with lockdown forcing the cancellation of our conference. We have moved onto online meetings and have held two family and general meetings, and two adult meetings. These have been appreciated by our membership and well attended. We have also kept in touch by sending out e-mail news shots and posted up to date information on our website (particularly important in regard to relevant advice for those with CAH during the pandemic – some of whom will have had to shield)
We have continued to rebrand and update our literature and continued to make our booklets more uniform, so they appear more professional. The re-design has been supported by our newsletter editor who has a masters in UX Design. As part of this masters degree we have supported research into improving online support and facilities for those with CAH who need to interface with the medical profession in various places.
Sue continue to sit on various steering committees and advisory boards for CAH and DSD. Jo (our Irish Coordinator) has personal experience of the DSD side of CAH and took on some of those duties for the CAH Group at various European DSD meetings. Kaz (our adult support lead) has been working with the ACT group also gave live talk at European Endocrine Conference as part of Adrenal insufficiency group with PSG and Medics.
We continue to be very grateful for the support of our members, who through their membership fees, sponsored events and donations have kept our funds topped up, in order that we can help new families/those affected by CAH by providing an information pack at diagnosis (which is when support is vital) to help them understand the condition and realise they are not alone. These funds also mean we are able to continue with providing newsletters, developing our resources and funding meetings/conferences.
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## **Section E Financial review**
**Brief statement of the charity’s policy on reserves**
The support group aims to hold a reserve of two years operational requirements. These funds are held in a cash interest account.
## **Details of any funds materially** There are no funds in deficit. **in deficit**
## **Further financial review details (Optional information)**
The support group finishes the year with an operating surplus of £14k for 2020/21. Our overall balance is held as £4.5k in the current account and £54.8k in the cash interest account.
You **may choose** to include additional information, where relevant about:
- the charity’s principal sources of funds (including any fundraising);
- The charities principle source of funding is from our membership. Income
- • how expenditure has through the year has been £2.3k in membership fees, this is less than the previous year. Donations from member fundraising has been £14.1k, more
- supported the key objectives than the previous financial year.
- of the charity;
- • Investment policy and Other income has come from local meeting payments prior to lockdown objectives including any (£145), income from Gift Aid (£235) and interest payments. ethical investment policy adopted. Expenditure was £2.7k over the financial year, lower than the £25.4k of the previous year, not least due to the inability to hold in person meetings that resulted in the cancelation of our main conference.
On a more detailed level, expenditure on administration was £906, lower than the previous year.
Our key objectives are to provide resources and support for members and the public. This is evident in the larger expense items during the year. Conference and local meetings £529, newsletter and information packs £938.
As has been the case for other years our expenses are concentrated on provision of information in person at meetings, online through our website or in print through the newsletters and information booklets.
During this year we have concentrated on maintaining income, minimising expenditure where sensible and ensuring the group has sufficient operating reserves. During the next financial year the Trustees will be looking to develop an investment policy that allows growth of assets while minimising risks.
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## **Section F Other optional information**
The aims for the upcoming year include:
- Provision of increased online meetings
- Updated literature
- Assessment of investment opportunities to improve financial stability
## **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)**
**Position (eg Secretary, Chair,**
**etc)**
**Date**|||
|---|---|---|
||Sue Elford|Jess Loveless|
||
Chair|Secretary|
||12/10/21||
||12/10/21||
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CAH Support Group Accounts :
1/4/20-31/3/21
|INCOME|£|£|EXPENDITURE|
|---|---|---|---|
||2019/20|2020/21||
|Subscriptions|3115|2362.5|Admin|
|Donations|6330.22|14103|Meetings|
|Conference|705.09|0|Conference|
|Local Meetings|65|145.44|Newsletter|
|Resources|101|10.05|Information Packs|
|Savings Account|19.32|12.13|Website|
|Grants|17445|0|AGM|
|Gift Aid|231.18|235.52|Insurance|
||||Audit|
||||Savings Account|
|TOTALS|28011.81|16868.64||
|Checked & approved|||Income over Expense|
|Simone Thomson||||
|ACMA, CGMA||||
|£|£|
|---|---|
|2019/20|2020/21|
|10724.24|905.67|
|1067.39|528.67|
|3056.76|0|
|710.79|731.63|
|670.58|206.13|
|893.98|0|
|317.26|0|
|196.19|89|
|295|250|
|7445|0|
|25377.19|2711.1|
||14157.54|
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