2021-04-04-accounts

’ - Trustees Annual Report for the period 2020 2021

From 5th April 2020 – 4[th] April 2021

Charity name: FASD AWARENESS (Formerly FASD Awareness South East)

Charity registration number: 1176933

Objectives and Activities

Summary of the purposes of the charity as set out in its governing document

Our main aim is to support the prevention of alcohol exposed pregnancies and to improve the quality of life for those living with Foetal Alcohol Spectrum Disorders (FASD) and their parents and carers. Our vision is to be a strong and effective voice for individuals and families living with FASD, while supporting initiatives across the UK to promote prevention, diagnosis, intervention and management. To advance the education of the general public in all areas relating to Foetal Alcohol Spectrum Disorder (FASD) including the promotion of research for the public benefit in all aspects of FASD and to publish the useful results.

Summary of the main activities in relation to those purposes for the public benefit, in particular, the activities, projects or services identified in the accounts.

1. To raise awareness of the prevalence, key features and outcomes of individuals affected by Foetal Alcohol Spectrum Disorders (FASD) 2. To intervene and offer more support for the benefit of individuals and families affected by FASD through diversification and use of video support. 3. To understand and raise awareness to the public about the lived experience from those affected by FASD 4. To understand and raise awareness to the public about the science related to FASD 5. To develop relationships with key partners and create a system to help the wider professional group to offer expert help in local areas. 6. To continue to develop relationships with other charities in the Alliance, Nationally and Internationally to gather research and share resources and have a consistent language. In this last year despite the continued restrictions of the Pandemic the charity has continue to develop and thrive. As you will be aware our main aim has always been to raise awareness of FASD through gathering knowledge from the experts we work alongside, those with lived experience and understanding the challenges parents, carers, adopters, and other professionals face in trying to better understand FASD. We also aim to supportpeople through sharingour learningwith as manyas

		possible. This is so we develop assessment processes which increase the quality of life for those living with, supporting, and working with FASD. During the month of September 2020, FASD Awareness announced the rollout of our #BeAware campaign. The campaign, ran across both traditional and online media, included testimonials from those with first- hand experience of living with the disorder, clinical guidance regarding alcohol and pregnancy, online videos and much more. September is officially recognised as FASD Awareness Month, a permanent expansion of International FASD Awareness Day, observed each year since 1999 on September 9th. We created a press release that was sent out to a targeted audience of female editors, to many online blogs, national press and radio. We received some very positive feedback, and BBC Newsroom South East asked the charity to do a feature. Tracy Allen, our Founder, was interviewed for local radio and KMTV. This has also enabled the charity to start a dialogue with Mumsnet, and other online bloggers before our January campaign. Our YouTube views have increased by just over 20k. On FASD day, FASD Awareness profile on all social media platforms was very evident. Some posts were shared with images of FASD Awareness and NOFAS as the leading organisations in the UK. A poet and ex-Headteacher (Karen Stanley) was commissioned to write a poem for the day. We created 2 films containing Karen reciting the poem with music and mood enhancing footage to launch on September 9th. FASD Awareness have maintained our training, consultations, and presentation programme this year. The Zoom platform started in March 2020 enabled a continued and developed service to offer support to groups and individuals through the pandemic and lockdown and was crucial as families were isolated in their homes during lockdown. Activity Days at Leeds Castle have been more limited due to the pandemic, but the numbers have increased further and the days are greatly appreciated by families. FASD Awareness still plan to locate premises to the Oast Community Centre, Rainham and the renovations are complete, but the move has still not been possible due to COVID. Pocket Parks Project– This project is still going ahead but again there has been delay due to the pandemic. We have been given an extension on the funding.
Statement confirming whether the trustees have had regard to the guidance		The Board of trustees has met mainly online in this period. Agendas, Papers and minutes were all supplied, and Minutes taken. Our new Treasurer Trustee Debbie Matthews has proven to be a real asset in terms of the accounts and ringfencing money for specific projects. Supported by a new staff Member who is an expert in fundraising, finances have more clarity. We follow a strict policy of safer recruitment. As part of this we have interviewed new trustees to develop the charity further and now have an educations specialist and local councillor.

issued by the Charity Commission on public benefit

The trustees have reviewed some of the Charity policies and have a clearer organisational chart that identifies our strengths and vulnerabilities in the trustee, staff, and volunteer group. Safeguarding training has continued online this year. As a Board of Trustees, we have developed over the year and Board Members old and new have found ways to develop their knowledge and skills and share with others. The most significant change has been that after taking advice from a small charities advisory team, our chair stepped down from his role in September 2020 to take on the role of Chief Executive Officer (CEO) of the charity. This was supported by our Founder, Tracy Allen, trustees, staff, and volunteers. In his role as Chair, he has been very proactive within the charity, local community, Nationally and Internationally in building links with professionals. His communication skills, knowledge, and skills in sharing information with others allow him to articulate to others and support our founder, and those with lived experience to share our learning. Through utilising his film making and skills in technology alongside Tracy and Max Blustin, film maker, we now have more films in process to share Worldwide. As a trustee, Paul Allen, and the family of volunteers have worked even in lockdown to prepare our office and support fund raising and community activities and I know Tracy, our founder would want me to report on their support to her in the last year as in previous years and the significance of their role in achieving the outcomes of the charity reported here.

Achievements and Performance

Summary of the main achievements of the charity, identifying the difference the charity’s work has made to the circumstances of its beneficiaries and any wider benefits to society as a whole.

This year 2020-21 has seen some dramatic developments in FASD Awareness’s direction and increased public profile. Due to the Covid-19 emergency, all of our physical support groups have been closed until more recently. Our relocation to The Oast Community Centre in Rainham has been put on hold and a change of personnel and paid professionals has reflected a more targeted skillset to assist the Board of Trustees and management in attaining our objectives. The Chair, Andrew Keeping, identified a conflict of interest and stood down as Chair to take on the role of CEO of FASD Awareness. This enabled him to take on a more managerial role and support the day to day running of the charity alongside Tracy Allen Founder. Wendy Spears (Vice Chair) became Chair for the interim period. FASD Awareness, is a charity which in the last four years has grown from a small local initiative into a national charity offering crucial and life changing guidance and support to individuals living with FASD and their families and carers. As a result of this development we changed the name with the Charities Commission from FASD Awareness South East to FASD Awareness. Children with FASD are socially limited, isolation is common and their families struggle findingappropriate childcare,activities,clubs and

opportunities that the children can manage. The existing provision for children with FASD is currently very limited as it is still a much misunderstood and misdiagnosed condition. Those living with it and their parents/carers and families struggle to get the support they need and there is also a lack of understanding within the care system, often leading to huge delays in receiving treatment which further adds to the frustration, misery and confusion faced by those living with FASD. They need a safe environment which offers opportunities for them to develop friendships, essential skills and gain greater independence. The families/carers need signposting and guidance to enable them to support the individuals with all aspects of their lives as they struggle with finding appropriate schools, receiving relevant benefits, obtaining the correct diagnosis and managing even the most basic of activities such as days out, holidays, childcare etc. FASD Awareness are able to signpost families and carers to the relevant and necessary services and their network and considerable experience offers immediate reassurance helping them to reduce their frustration and feel less isolated.

As the pandemic started to disrupt nearly every facet of society, it was rightly at the forefront of our public health professionals’ attention. In response to this emergency and the on-going social distancing regulations, the charity started running online support meetings to continue to fulfil the mission of raising awareness of FASD and supporting those who are living with FASD and their parents and carers. The virtual support groups have been hugely successful and a valuable experience for all involved. They have welcomed individuals from all corners of GB and parts of America too!

Going forward, the move to the new offices, at The Oast, will enable the charity to grow its services, offer additional physical support groups, accommodate larger numbers of children and adults with FASD and undertake activities such as Sensory play, Lego therapy, Art therapy, Techno play and Music therapy. The move will also enable us to train new volunteers and offer more bespoke training courses for parents, carers, health professionals, teachers, justice professionals and service providers.

Our founder, Tracy, has used her knowledge, experience and skills for group and one-to-one sessions which have been crucial in the COVID years and helped the charity to reach a wider knowledge.

FASD Awareness are delighted to be a charity partner for Kent and Medway Clinical Commissioning Group (CCG), supporting the NICE programme, acting as specialist consultants and experts by experience. We will update the networks throughout the life of the programme in terms of what has been identified and provided around the three work strands: Prevention; Communications and Engagement and Workforce Development.

Achievements against objectives set

Over the year our primary objectives, as written in our business plan, have been to improve awareness of FASD through our #BeAware campaign of films, online training, social media and presentations. Our films have increased views on YouTube and are shared worldwide and used as training material by organisations worldwide. Our images and posts are shared regularly among the wider FASD community on Twitter, Instagram and via Facebook Pages. We have encouraged students volunteering for FASD Awareness through the Duke of Edinburgh Award Scheme to create a bespoke Social Media Image campaign for Instagram. These have been shared worldwide by organisations such as DofE and MP Bill Esterson. Our support groups have increased in numbers and the online Zoom support group is seeing a considerable take up throughout the country and further afield. Our FASD friendship groups enable us to work closely with individuals to educate both ourselves, those living with FASD and help create strategies to support our individuals. Over the past couple of years, FASD Awareness has (as stakeholders) helped make recommendations for the forthcoming NICE guidelines and supported the CCG in running focus groups with Medway Voluntary Action. This has led to a dialogue with the local CCG and NHS Trusts in Kent & Medway. Our continued collaboration and a push for a provision to cater for FASD Families in the South East of England has resulted in the formation of the Kent and Medway Foetal Alcohol Spectrum Disorder (FASD) System Partnership Group. Together with the CCG and NHS Trust, we are developing a FASD system partnership group to provide greater focus on this condition. As a stakeholder in this area of work, we have invited related organisations and a variety of leading professionals that will have a connection with Neurodisability and FASD, to be a part of the developing partnership across Kent and Medway. The first sessions established the initial focus of the partnership group, and key areas that we addressed moving forwards. As well as forthcoming NICE guidance, the FASD Awareness, the Department of Health and Social Care are considering improvements in the following five areas, following stakeholder engagement: • Focusing on prevention • Improving education and awareness relating to FASD • The whole system impacts and approach to FASD – health, education, social care, employment and the benefits system, and criminal justice • Improving processes for diagnosis and treatment • Improving data and intelligence relating to FASD prevalence The partnership Board met for the first time on 22nd October 2020 via MS Teams. We have now set up a Task and Finish Groups Scoping Document with Groups covering, Prevention, Comms & Engagement and Workforce Mapping & Training Progs.

		Partnering up with the CCG and NHS trusts in forming the Kent and Medway Foetal Alcohol Spectrum Disorder (FASD) System Partnership Group, has been a huge step forward in getting FASD understood and acknowledged amongst professional organisations who have the most profound connection with FASD this has progressed rapidly with the support of one of our trustees after the input from the founder and CEO in building relationships and sharing the work of the charity to date. Our founder and CEO have continued to deliver bespoke training to Student Midwives on the Kent and Canterbury University Degree Course at Christchurch College. They have also delivered a presentation to Professionals working with the Looked After Children. These have been a direct impact of the new partnerships developed with the CCG and NHS Trusts. Dr Adesoji Abiona has been a continued strength to the trustees and charity in his knowledge and experience in FASD and he aims to share this in the future with others. The support and friendship groups are proving very successful. The parent/carers groups have been very productive for many of the families. The advice and recommendations/tips from other families has proven very useful to new families and lead to some positive outcomes. Many of those who attend had stated that they would like an additional evening support group, as this would be more manageable in their daily timetables. Some have expressed that they don’t like to miss a session but find the morning sessions difficult to attend regularly. These have proved a great success.
Performance of fundraising activities against objectives set		The Fore Raft Fund– Allocation Summary 3-month period. Slight delays due to Covid-19 and continued thereafter first lockdown and into second lockdown. Delivery of 1-2-1 sessions for 15-30minutes. These included “Show & Tell” sessions, family fun discussions, how to use the Free Sports Packs, music sessions, song writing sessions & Dance. Music and video editing advice for social media. Delivery of 11–16-year-old FASD Friends groups. Peer group for discussions. 2-hour sessions. Delivery of 16+ FASD Friends Groups. 8 x 2-hour sessions. KCF Covid-19 Emergency Fund Duration 29/04/20- 29/08/20 - IT support, Artwork design for social media and advertising. Wix generated mailouts and publicity. Phone calls and emails to connections within the FASD Community & local charities/organisations/schools. Social media publicity on Twitter/Facebook/Instagram/LinkedIn and follow up responses. Safeguarding strategies designed and implemented via an individual registration form for each group, follow up emails with strict rules around group engagements. Initial vetting of registrants via phone call, or if abroad email. Booking and advertising. Monitoring of sessions and note taking. Report writing. Creation of 3x videospromotingthe new online

videos, a guide to using Zoom, and a message of reassurance to the FASD community from the Chair of FASD Awareness. Pocket Parks Project A community project in collaboration with Greenspace Development, Medway Council, The Oast Community Centre Rainham and FASD Awareness to restore and create a sustainable Pocket Garden surrounding the Car Park and The Oast Community centre in Rainham, Kent. Project following Celebrity TV Gardner Mark Lane’s original plans and consultation with TPA Gardening. A film documenting the journey will be included in the project. Sport England & Kent Sport.org. Purchase of sensory sports packs for 50 individuals. Delivery of 2 Family Activity Days at Leeds Castle. Sports activities delivered with social distancing rules. Evidence the days with films and advertising on social media. Additional zoom sports sessions for clients who were unable to attend event using the sensory sports packs. – National Lottery Funding Community Fund (HM Government) Support of our Online Support Groups. Produced a film dedicated to the Online support Groups, #BeAware Campaign, and continuation of our services through the Covid 19 pandemic. Posted on social media and copied in National Lottery, HM Government, Community Fund and promoted via their #CommunitiesCan campaign. Comic Relief Community Fund (England) Project Delivery Grants scheme- Thus fund is for the purpose of continuing to run our Online Support Group. Regular donations were also received following online social media advertising onFacebook Birthdays, Facebook Charity Support, Amazon Smile, Local Businesses, Tesco Points, and Company Support. Our website donations and support pages have been designed to promote this area of fundraising.

Financial Review

Financial Review
Review of the charity’s financial position at the end of the period	With the focus on fundraising, the charity’s financial position is seeing a very positive growth and projections for the coming year are promising to be even better. The COVID-19 pandemic has shown the need for online support groups and additional funding is looking promising to continue with these for the foreseeable future. There are also other projects in the pipeline, funding for which we have beenpromised.
Statement explaining the policy for holdingreserves	As well as funds received for specific projects yet to be completed, the charity holds reserves for the provision of online support groups and to coverprojected administrative costs.

stating why they are held
Amount of reserves held	£ 16,805 (plus a further £ 14,810 ringfenced for upcoming/continuing projects)
Reasons for holding zero reserves	N/A
Details of fund materiallyin deficit	N/A
Explanation of any uncertainties about the charity continuing as a goingconcern	N/A
The charity’s principal sources of funds (including any fundraising)	There is a balanced mix of charitable donations, corporate partnerships and project specific funding.
Investment policy and objectives including any social investment policy adopted	As we continue to grow our charity and fundraising/ bid applications are only just starting to come to fruition, there has been no need to develop a hard and fast investment policy. However, with our focus on further developing our fundraising profile for the upcoming year this is something which will be added to the financial planning going forward. 2020/21 has been pivotal for all charities, COVID-19 has propelled most of us into digital transformation at a pace we thought would take years. Never has fundraising been such a challenging task. Not only do fundraisers need to find remote, creative ways to engage with donors, but also to make conscious efforts to broaden the diversity of our donor pools. But the outcome is worth the work: thriving in the digital world while building inclusive donor experiences. No need to say we find ourselves at a turning point now, and with it comes many questions: What changes are needed to adapt to the new normal? How do we thrive when we can’t meet donors face-to-face? How do we continue to fundraise in economically uncertain times? What we do know now is post pandemic, humans are hungry for connection and community right now – and we will focus on building strong, mutually beneficial relationships with our supporters. Despite the challenges of the last 18 months, we have been able to grow our services to those living with FASD and their families and this is due to receiving crucial funding from: • Kent Community Foundation. • The Fore Trust • Sport England.

• National Lottery • Ministry for Housing Communities & Local Government - • Moto in the community • SEIB Insurance Brokers Also, through regular funding from:- Allied Fabrications, Chris Thomason and other generous supporters We have also received further funding from the KCF of £5,000 for our case studies films and £1,000 from Tesco Bags of Help Grant Scheme.

A description of the principal risks facing the charity

As with any charity staffing and funding are the main issues. We have a great team of volunteers, staff and trustees but are mindful that our rapid growth and development has put a lot of pressure on a few and we need to continue to recruit staff and volunteers as funding allows and our main focus is on continuing with our current objectives, projects and fundraising. The support groups established during the recent COVID pandemic have proven extremely popular and is something that we would like to offer more of, particularly in the 1-2-1 category. Funding must be sought to see these groups continue and grow and will be the focus of our fundraising activities for the upcoming financial year.

Structure, Governance and Management

How is the charity constituted?

Charitable Incorporated Organisation (CIO), only voting members are its charity trustees. ‘Foundation’ Model.

Trustee selection methods including details of any constitutional provisions.

In selecting individuals for appointment as charity trustees, the charity trustees must have regard to the skills, knowledge and experience needed for the effective administration of the CIO. Apart from the first charity trustees, every trustee must be appointed for a term of 3 years by a resolution passed at a properly convened meeting of the charity trustees. They will retire by the next AGM but may stand for re-election. Trustees are interviewed in accordance with the Safer Recruitment policy and all necessary DBS checks and References are taken.

Conclusion

This has been a fantastic year and I cannot take credit for much of which is reported here today. The development of the CEO role and loss to the Board of Andrew Keeping has come with mixed emotions but has been a real asset to the charity. As I stand down from

my role on the Board having ‘held the fort’ for six months I am pleased to report on the finding of our new Chair who was brought onto the Board at our AGM in October 2021. Tracy, our founder, continues with her determination, networking skills and resilience to develop services.

As Dr Mukerjee said in a recent webinar “A lot of people with FASD are artistic and creative and our role as parents, carers, adopters and professionals is to scaffold their weaknesses and build on their strengths.” This is also true of our board and staff and volunteers, and it is evidenced and proven that our CEO and founder and the board of trustees and volunteers are working together to do that not only for the people living with FASD but also in the people involved in raising awareness through the charity and those we are working alongside. A participant in a recent support group referenced a book linked to FASD by Jan Griffin, “Find your Child’s Brilliance” and that is what we all aim to do for the children, their families and the professionals we are working with. We have found the brilliance of many of those who give up their valued time to be part of the charity’s work and those who have fed back on the use of the service. This has helped us to achieve our five year target in three years.

Reference and Administrative details

Charityname	FASD Awareness
Other name the charity uses	FASD Awareness South East
Registered charity number	1176933
Charity’s principal address	Hall Wood Business Park North Dane Way Chatham ME5 8YE

Names of the charity trustees who manage the charity

1 2 3 4 5 6 7 8	Trustee name	Office (if any)	Dates acted if not for whole year	Name of person who interviewed/ appointed trustee
	Andrew Keeping	Chair	2018-March 2021
	Wendy Spears	Vice-Chair/Chair	Acting Chair April 2021 – September 2021	A Keeping and W Spears
	Irene Hall	Chair	Appointed 20th September 2021
	Dr Adesoji Abeona	(Medical)	Appointed 2018
	Deborah Matthews	(Treasurer)	Appointed January 2020	A Keeping and P Rorison
	Paul Allen		Appointed 2018
	Colin Newbold		Resigned January 2020
	Pamela Rorison		Resigned August 2020
	Wendy Purdy		Appointed September 2020	A Keeping and W Spears

9	Sophie Cartwright		Appointed July 2020	A Keeping and W Spears
	Lyndon McLean		Appointed 20th September 2021
	Andy Nichols		Appointed 20th September 2021

Declarations

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		Paul Allen_(Digital Signature)_
	Wendy Spears	Paul Allen
	CHAIR	Trustee
	20thSeptember 2021
	20thSeptember 2021

FASD Awareness Financials 2020 - 2021

Code	Cost type	Amount		Code	Income type	Amount
0001	Admin	£10,588.62		1001	FASD training	£0.00
0002	Training	£0.00		1002	Corporate Partnerships	£2,190.00
0003	Board meetings	£0.00		1003	Grants	£43,705.82
0004	Print/stationery	£95.89		1004	Donations	£5,280.63
0005	Postage	£589.98		1005	Bank Interest on Reserve AC	£2.46
0006	Website/emails	£360.00
0007	IT	£63.10
0008	Supportgroup	£389.10
0009	Travel	£394.30
0010	Telecommunications	£305.08
0011	Marketing	£6,085.98
0012	Advertising	£112.07
0013	Fundraising	£6,000.00
0014	Events	£80.00
0015	Professional fees	£140.00
0016	Days out and activities	£0.00
0017	Entertainment	£0.00
0018	Banking	£0.00
0019	HMRC	£0.00
0020	Wages	£0.00
0021	Insurance	£276.08
0022	General expenses	£1.60
0023	FASD training	£0.00
0024	Maintenance & Repairs	£39.92
0025	Rent	£0.00
0026	Park Project Costs	£8,425.00
0027	KCF £1,084.90			TOTAL		£51,178.91
0028	National Lottery £1,800.00			Bank A/C @ 04/04/21: Current AC Savings AC NB: includes RingFenced Project Specific Total Free Reserves @ 05/04/2021		£26,592.20 £5,023.56
0029	Sport England £4,916.16
0030	MVA £70.00
0031	Fore Trust £6,104.00
TOTAL		£47,921.78				£31,615.76
						£14,810.41
						£16,805.35

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