## **Trustees’ Annual Report for the period 01.01.2021 to 31.12.2021** ## **Charity Name: Action Cerebral Palsy** ## **Registered charity number: 1165217** ## **www.actioncp.org** ## **Principal Address: Units 1 and 2 Field View, Baynards Green, Bicester, Oxon, OX27 7SG** The Trustees have pleasure in presenting their annual report and financial statements for the year ended 31st December 2021. ## **Structure and Governance** Action Cerebral Palsy is a Registered Charity (number 1165217). It is a Company (number 09651097) limited by guarantee. The Charity is governed by its Articles of Association. The Trustees who served during the period were: Mr Philip Lea (Chair) Professor Neena Modi Mr Duncan Walsh Miss Katharine Gollop Mr Anthony McGarel-Groves (Treasurer) Dr Helen Hunt The directors of the company, who are also Charity Trustees for the purpose of charity law, form the Board of Trustees. One of the Trustees serves voluntarily as Treasurer and Company Secretary. There are three full board meetings held each year. One Trustee is appointed as Chairperson for each meeting. There were no new Trustees appointed during the financial year. When new trustees are appointed, they are introduced to the Board and briefed on all aspects of the Charities objectives and policies and Charity Commission requirements. Trustees are encouraged to seek training as appropriate, and to observe and follow the requirements and guidelines set down by the Charity Commission. Action Cerebral Palsy’s trustees have diverse professional backgrounds, and all have direct professional or lived experience supporting children with cerebral palsy and their families. ## **The Executive** The Charity’s day-to-day operations are managed by the Chief Executive and additional project work by the Project Lead. The Chief Executive of Action Cerebral Palsy is Amanda Richardson MBE. The Chief Executive and Project Lead are employed on a contractual basis. Both posts are part-time. ## **Our Charitable Objectives:** 1. To engage with policy makers in order to promote the creation of a national strategy and care pathways for intervention and provision for children with cerebral palsies 2. To be a source of informed advice on cerebral palsy for the public and policy makers 3. To represent the best interests of the cerebral palsy community 4. To facilitate the development of best practice for intervention, care, education and support for children and young people with cerebral palsies across the United Kingdom 5. To facilitate and disseminate research on cerebral palsy and therapeutic and educational intervention ## **Public Benefit** In establishing annual objectives and overseeing the Charity’s activities, the trustees have regard to the principles of public benefit at all times. The core purpose of Action Cerebral Palsy is to work towards better public and professional awareness and understanding of cerebral palsy and an improved quality of life for all children in the United Kingdom with the condition. Action Cerebral Palsy needs to raise funds to support the cost of working towards these outcomes. ## **About Cerebral Palsy** Cerebral palsy is a lifelong neurological condition which affects the body’s ability to move normally and which also has an impact on many related aspects of health, learning, development, social participation and wellbeing. There are an estimated 30,000 children with cerebral palsy in the UK and it is the most common physical disability of childhood. Children with cerebral palsy may also have a range of physical and cognitive impairments. - 1 in 3 is unable to walk - 1 in 10 has a severe vision impairment - 1 in 4 is unable to talk - 1 in 4 has bladder control problems - 3 in 4 experience pain - 1 in 5 has sleep disorder - 1 in 4 has epilepsy 1 in 5 has saliva control problems - 1 in 4 has a behaviour disorder - 1 in 2 has an intellectual impairment ## **Summary of main activities and achievements during 2021.** Action Cerebral Palsy has filled the gap left by other campaigning organisations to advocate specifically on behalf of children and young people with cerebral palsy. The Charity has drawn together leading clinicians, therapists, healthcare professionals, special needs educators and third sector organisations as well as parents and young people with cerebral palsy to share with policy makers their concerns about the provision of intervention, care, education, and support available. ## **Engagement with policy makers in order to promote the creation of a national strategy and care pathways for intervention and provision for children with cerebral palsies** Until the campaigning initiatives of Action Cerebral Palsy, there had previously been no unified voice or platform for cerebral palsy clinical professionals and parents of children with cerebral palsy to draw together a coherent case for policy makers for improved provisions and reform to improve early identification, intervention and pathways of care for infants with cerebral palsy. The charity therefore decided to act proactively and in late 2020, Action Cerebral Palsy sponsored and facilitated the first **All-Party** **Parliamentary Group on Cerebral Palsy (APPG) on Cerebral Palsy** and led the first two sessions which examined early identification, intervention and pathways of care for infants with cerebral palsy. These sessions resulted in the March 2021 report; _Early identification, intervention and pathways of care of infants and young children with cerebral palsy: The case for reform and investment._ _https://actioncp.org/wp-content/uploads/APPG-on-Cerebral-Palsy-report2021.pdf_ Similarly, there has been no unified voice or platform for cerebral palsy educational professionals and parents of children and young people with cerebral palsy to draw together a coherent case for improved provisions and reform to improve educational provision and life outcomes for children with cerebral palsy. In 2021, the charity once again sponsored and facilitated the third and fourth sessions of the **All-Party Parliamentary Group on Cerebral Palsy (APPG).** These sessions were attended by leading educational experts and examined education, health and care plans (EHCPs) and teaching and learning for children with cerebral palsy and resulted in the October 2021 report _Best Practice in Education, Health and Care Plans (EHCPs), Teaching, and Learning for Children with Cerebral Palsy: The case for quality provision and standardisation._ _https://actioncp.org/wp-content/uploads/EHCP-report-APPG-on-Cerebral-PalsyOctober-2021.pdf_ Following the publication of the APPG reports and recommendations in late 2021, Action Cerebral Palsy worked closely with the Public Affairs group, Connect, to establish a work plan with the aim of facilitating the implementation of the recommendations in both reports into public life. Contact was made with the Department of Health and Social Care, NHS England and the National Institute for Clinical Excellence and a working party from these agencies, including Action Cerebral Palsy, was established to progress the APPG recommendations. ## **To be a source of informed advice on cerebral palsy for the public and policy makers** Although cerebral palsy is the most common physical disability in childhood, policy makers are often unaware of the experience of many families with children with cerebral palsy which is of being inadequately supported and informed at the critical and devastating point of diagnosis and of having to fight throughout their child’s growing years for the level of service and care their child needs to thrive. To supplement evidence from the APPG sessions, the charity carried out a national parent consultation and survey in summer 2021 to gather vital data on the experiences of families with children with cerebral palsy and to compare progress against findings from the Charity’s 2014 parent survey. Findings from the survey show that progress in support for families with children with cerebral palsy since the initial Parliamentary Inquiry in 2014 has been too slow. There are still unacceptable anomalies and inadequacies of current educational, health and care systems of provision experienced by many families with children with cerebral palsy. Parents continue to tell us that they feel the provision is fractured, incohesive, and does not always follow the statutory timelines or duty of care. Parents are left feeling marginalised and frustrated by a system that does not understand or have sufficient training in their child’s disability, where services are not joined up or consistent, and one in which their child’s needs are secondary to local authority budgets. Information from this parent survey has been incorporated into Government consultations. ## **Public Awareness Campaign** Both the APPG and the Action Cerebral Palsy survey highlighted that poor information for the public about the signs of cerebral palsy and parents lacking the information they need about their child’s condition at diagnosis creates delay in swift referrals and intervention for children with cerebral palsy which impacts on their health and development. As a result, the Charity began work on a public awareness campaign to ensure that infants and children at risk of cerebral palsy would no longer “fall through the net” through lack of knowledge about the signs of the condition. In 2020 the charity recruited the services of a Project Co-ordinator to develop and deliver a project and fundraising plan for a cerebral palsy awareness campaign. The campaign aims to alert parents, the public and childcare professionals to the signs of cerebral palsy in young children and the urgency of onward referral for further assessment. It is hoped that this will be the first phase of a broader support and advice service for families with children with cerebral palsy. Collaborative work with an expert advisory group of leading clinicians, healthcare professionals, therapists, parents of children with cerebral palsy and public affairs specialists began in 2020 and in 2021 resulted in the production of a public information poster which aims to alert parents and the public to the early warning signs of cerebral palsy and give clear direction for action; _**If in doubt, check it out!**_ This poster achieved accreditation by the Institute of Health Visitors in late 2021 and will be distributed to GP surgeries and Early Years Centres in 2022. It is available on the Action Cerebral palsy Website. https://actioncp.org/action-cerebralpalsy-launches-public-awareness-campaign/ Work on a more detailed leaflet for parents about early motor development, to supplement the initial awareness poster, began in 2021 and is due for completion in 2022. An extensive review and redesign of the Charity’s website took place during 2021. This enabled the Charity to provide a platform for a more comprehensive source of information and advice about cerebral palsy for policy makers, parents, professionals, and the public. The updated website also enabled the Charity to present its work and activities in a more dynamic and interactive manner. Effort was made to “future proof” the website for additional development. ## **To represent the best interests of the cerebral palsy community** Action Cerebral Palsy is proud to have been a voice for children and young people with cerebral palsy and their families throughout 2021 and to have raised awareness of the condition through the Charity’s research, publications, campaigns and engagement with the public, professionals and policy makers. The Charity’s reports and publications are of value to other services, schools, practitioners and charities in this sector to who rely on this data to help them understand the status of the cerebral palsy landscape in the UK. In addition to its extensive policy and public awareness work, the Charity; - Maintained a commentary on social media on aspects of health and education that concerns children with cerebral palsy - Responded to national consultations on disability and education to represent the needs of children with cerebral palsy and their families - Participated in the steering group of the Embracing Complexity Consortium, which brings together organisations which support people with neurodevelopmental conditions. ## **To facilitate the development of best practice for intervention, care, education and support for children and young people with cerebral palsies across the United Kingdom** In addition to the ground-breaking work to bring families, professionals and policy makers together to identify the need for best practice pathways and policy development through the Charity’s sponsorship of the APPG, Action Cerebral Palsy; - Was a founder member of the newly formed UK Cerebral Palsy Coalition which aims to foster collaboration with other cerebral palsy organisations to strengthen our common aims and to provide support for policy and research and into cerebral palsy as a lifelong condition. - Shared information and advice about COVID-19 and its impact on children and families directly to individuals, through social media and on the Charity’s website. - Collaborated with an advisory group of expert clinicians, therapists, public affairs professionals and parents of children with cerebral palsy to develop the key messaging for our public awareness campaign about the early warning signs of cerebral palsy – _**If in doubt, check it out**_ . The poster for this campaign has been accredited by the Institute of Health Visiting, and will now ensure that health visitors and other first line early years professionals as well as new parents have an accessible resource to use and share. ## **To facilitate and disseminate research on cerebral palsy and therapeutic and educational intervention** The Charity has continued to proactively promote and disseminate the latest UK and international research activities related to cerebral palsy in social media throughout the year. The newly redesigned Action Cerebral Palsy website is now better able to share information and resources for parents, professionals, policy makers and researchers. ## **Summary** During 2021, Action Cerebral Palsy worked closely with families of children with cerebral palsy, policy makers, healthcare and educational professionals and a wide range of third sector organisations to increase awareness of cerebral palsy. The Charity has worked hard to better understand the needs, the existing levels of provision, and identify what best practice should look like across the sectors and to communicate this to policy makers and practitioners. As a result, it has significantly raised the profile of both the Charity and of the needs of children with cerebral palsy and influenced the agenda for change. However, there is still a very long way to go to level the playing field for all children at risk or with cerebral palsy in the UK. The Charity will continue to work on behalf of all children with or at risk of cerebral palsy with the aim of achieving a lasting positive impact on the lives of the 1,800 children born each year who will be diagnosed with condition. The Charity will do this by; - Raising awareness with politicians, professionals and the general public about cerebral palsy and the issues facing children and young people with the condition - Providing information about cerebral palsy for the public, professionals and policy makers - Campaigning for improved access to care and support - Influencing strategy at both national and local level - Sharing and developing models of best practice To read more about the Charity’s strategy going forward as well as the impact we have already been able to have, the Action Cerebral Palsy Strategy & Impact Report which was launched at the House of Commons in March 2022 is available here: ACP-Strategy-and-Impact-Report-20222027.pdf (actioncp.org). As a result of our work, the Charity has been able to draw together a broad network of experts in the field of childhood cerebral palsy who are united in their wish for a better future for this vulnerable group. The Charity is immensely grateful for their help, guidance and support. ## **Charitable objectives for 2022** - Build on the findings and recommendations of the Charity’s reports and on the 2020-2021 APPG on best practice early intervention and pathways of healthcare for infants at risk of cerebral palsy, through ongoing dialogue with Government at local and national level and with health care professionals. - Proactively engage with local authorities to further the aims of the APPG recommendations regarding improved awareness of cerebral palsy and provision for young people with the condition. - Design, produce and disseminate electronically and in hard copy, a cerebral palsy information pack which will provide more information about typical and atypical motor development and thereby alert parents and the public to the signs and indicators of cerebral palsy in young children and the importance of rapid referral for further assessment. - Co-sponsor and facilitate further APPG sessions which will focus on Transition to Adulthood and Social Inclusion for children and young people with cerebral palsy. - Continue to develop and lead collaborative work with national and international organisations who seek to inform and influence policy makers about the need for improved provision for children with neuro disabling conditions such as cerebral palsy and their families and for better systems of data collection on the condition. - Work with the Department for Education, schools, colleges and academic institutions to develop and promote high quality training for teachers on how best to support children and young people with cerebral palsy and related learning challenges. - Continue to produce and disseminate information about cerebral palsy for researchers, professionals, MPs and the public to promote awareness of the condition and the continuing challenges of provision that children and families experience. ## **Financial Review** The trustees have a continued focus on strengthening the Charity’s financial sustainability through proactively seeking new sources of charitable funding. Despite the continuing challenges of fundraising which COVID-19 has presented causing unprecedented demands on grant making organisations, the Charity has been successful in securing both restricted and unrestricted funding from trusts and foundations and from generous individual, community and corporate donors. Action Cerebral Palsy is indebted to the many individuals, families and funding organisations which have donated to the Charity during 2021. As the restrictions imposed by COVID reduced somewhat during 2021 and the charitable activities increased due to the momentum of the policy work and awareness campaigns, the Charity increased its spending on these activities in line with budgets set. This had the effect of reducing the artificially high level of cash reserves in 2020 created by the restrictions on activities and therefore spending caused by the pandemic, but maintained an acceptable level of reserves in line with the reserves policy. The Charity makes all possible efficiencies to keep costs to a minimum and spending continues to be tightly controlled. The Charity has also benefited from generous pro bono administrative support. The Charity does not employ paid staff, but instead uses specialist consultancy and volunteer services to support its operations. Action Cerebral Palsy is a small but aspirational charity and is indebted to the many individuals, families, professionals working with children with cerebral palsy and funding organisation which have supported our work over the past year. Without a dedicated fundraising role, the Charity is hugely grateful for the funding that it has received in 2021 from a number of trusts and foundations, including the Barbara Ward Children’s Foundation and Childwick Charitable Trust. In late 2021, the Charity was pleased to benefit from restricted trust income for the Awareness Campaign which will be expended in 2022 when the campaign is launched. The table below identifies the Charity’s income by type and expenditure by area of activity. While the Charity’s CEO is largely focused on policy work, she is also involved in the Awareness Campaigning and Fundraising efforts. Likewise, a significant portion of the Project Lead’s time has been spent on securing funding for the campaign. The Charity’s website redesign has already benefited our ability to advocate and educate. For 2021, the Charity’s income and expenditure was as follows; **----- Start of picture text -----**
Income 2021
£
Individual Giving 23,995
£
Community 7,552
£
Corporate 1,140
£
Legacy/In Memorium 2,065
£
Trusts (Non-Restricted) 6,000
£
Trusts (Restricted) 9,000
£
Total Income 49,752
Expenditure by Type 2021
£
Campaigning 23,213
£
Advocacy 2,982
Awareness Raising & Education - £
Unrestricted 10,128
Awareness Raising & Education - £
Restricted 8,500
£
Fundraising 3,500
£
Administration 488
£
Total Expenditure 48,811
£
Net Profit/Loss 941
**----- End of picture text -----**
**----- Start of picture text -----**
Expenditure by Area of Activity - 2021
17.43% 0.92%
7.18%
47.59%
6.11%
20.77% Campaigning
Advocacy
Awareness Raising & Education - Unrestricted
Awareness Raising & Education - Restricted
Fundraising
**----- End of picture text -----**
## **Reserves Policy** The Trustees have resolved, in view of the size and operational requirements of the charity, that the minimum level of reserves should be 3 months of budgeted expenditure. ## **Going Concern** Further to independent consultation, the Trustees have a reasonable expectation that the Charity has adequate resources to continue in operational existence for the foreseeable future. For this reason, they continue to adopt the going concern basis in preparing the financial statements. ## **Financial Strategy** Whilst the Charity is at present very small in comparison with other disability charities, it is ambitious in its mission and is highly conscious of its current status as being the only existing UK charity campaigning solely on behalf of children with cerebral palsy and their families. In order to grow the Charity’s capacity to campaign, educate, and advocate on behalf of our community of 30,000 children and young people with cerebral palsy in the UK, the Trustees recognise the need for a dedicated fundraising strategy. Over the next three years, Action Cerebral Palsy needs to treble its income in order to build financial stability so that the Charity can fund and plan its key charitable activities and delivery its strategy with confidence. As a small charity, Action Cerebral Palsy is currently not eligible for consideration by a number of key funders and does not have the capacity to adequately support or engage with its wider community on fundraising endeavours. The Charity has no dedicated resources for fundraising activities and this important aspect of the Charity’s sustainability is balanced within its limited resources against the need to carry out the core activities of the Charity, including an increasing demand for information and advocacy from the families impacted by cerebral palsy as a result of the effects of the pandemic and pressure on public services. To grow its income to £150,000 within the next three years, the Charity plans to: - Leverage dedicated (and self-sustaining) fundraising expertise to support the Chief Executive, Project Lead and Trustees to develop a robust fundraising strategy and to plan and deliver fundraising activities - Develop a three-year fundraising strategy, based on analysis of Action Cerebral Palsy funding history, new opportunities and potential income generation across a range of fundraising activities to enable the Charity to target and engage with individuals, corporates, and trusts and foundations - Improve the Charity’s infrastructure for efficient and effective fundraising including a CRM - Develop a case for support across the various fundraising channels. - Evaluate the Charity’s in-house fundraising needs and define and develop necessary fundraising skills. The Trustees have agreed to release sufficient funding resources from the Charity over the next three years in order to progress this strategy. Regtst¥ed number.. 09651097 ACTfOP4 CEAFBAAL PALSY UNALIDZTEO FZNAI4CIAL SYATEMEFrrs FOR THe YEAR EPIDED 31 DECEM8ER 2021 UniL% 1 &2 Field Bi¢r5ter 0￿7 7SG A¢tl¢)n Cerebral Pa15y Un?udlt*41 Financlaj Statements For The Year Ended 31 December 2021 Page Company Inlormation Prvfit Loss Ac¢L¥Jnt Balance Sheet The follov41ng pages do not forrn part of the stèbAory KrO￿ts.. Tradlng Profft and Loss Account Artlon C•Mbr•l Palsy For Th¢ Year End¢d 31 Decemb•r 2021 Mr DurKan Walsh Dr Hekn HunL Mr PhS1ip Lea Mr Anthony MLfjarel-6rove5 Professor N*nè Modi Ms Katharliiy ¢&)l￿p 09651097 Dlr•rtors C<>mpany 14umbtr Reylstered OffFce Units l & 2 F(etd Vie Baynards Green Blcester OX27 7SG Phlllp Deane A¢¢ountancy Ltd Vnits l & 2 Flew Wew eayi)dr¢J5 Green Bkester OX27 75G Actlon Cerebral Palsy Accountant's Report For The Year Ended 31 December 2021 In oraer to asslst you to fv￿1 your dubes under the Companies Art 21*)6. we have tompiled the finantsal ststements of the company from the accountyng remrds and infarniaknon and explanatlons you have given to us. This report Js made to the dirertor5 in atcordance with the terrns ofwr engagernent. Our vlork has been undertaken to prepare for approval by the direciors the finanaal statetnents that we have been en9aged to cotnpile, to report to the dlrector5 that we have done so. and Trn gtatè th0￿ matters that we have agrttd to State LQ Uivin In rhls reporE and ror no other purpose. To the fullest extent permitted by law. we do not accept or •5sume r¢sponsilAlity to anyone other than the Company and the Company's directors for our work or for this report. Yw have acknowledged on the balance sheet as at year ended 31 December 2021 your duty to ensure that the company has kept proper accounbng records and to Prepa￿ fina￿￿1 statements that 9lve a true and fair v*w under the Companles Act 2006. You consi¢Jer th4t the company Is exempt frorn the sratutory wuirement for an audlt for the year. We have not been Instrurted to carry out an audit of the finarri41 statemwts. For thls reasoh. we have not vedfied the accurècy or cornpletene5s of the accounting re£ord5 or InfmtM and e¥planatlons ytyj have oiven to us and do nat, therefort, expr¢•y uny opinion lkiws'. 6 12020.- 6) 2. G•n•p*l ltylomi•tS•n Action Cerebral Pèlsy 1$ a prsvote e+>mpany* 11rnSted by sh•res. In England & Wales. reglstered number 09651097 . The reglstered offlce 1$ Unifs i & 2 Fleld Mew. BayThard£ Grvdn. 8ic•xer. OX27 7SG. Fur tne year endlno 31 De￿rnber 2021 the tompany wos Èntytled to ¢xempbon frorn au¢Jlt UAder 5ethon 477 01 the Companles Art 2006 relètln9 to smèll compan*¢s. J. Ru•rv¢• Restritted reserwes Stttlng In the Balance Sheet for the year are É6.200. Dlr•ctor•' Mwon•lbllltl••: Th• member5 have not requlrEd the company to obtsln an judit In IrC(￿an¢• wlth e¢¥on 476 of 11)e Cornpanles Act 2006. The ¢lrettors acknowltdge their re$ponslbilltle$ for complying ¥Ylth th¢ requlr•ments of the A¢t wlth regpert to •ccountlng re¢ords and ihe prtparètlon of KcovTrts. Thps• attounts ha be¢n pryp4ie¢ In x¢omarKe the mlcro-enttr provlslms. On behalf of th Dats Artlon C•rebral Pal*y Trndlng Profft Jnd Loss Account For The Year Ended 31 De¢ember 2021 2021 2020 Unr•strfrt•d R•strlct¢d Ilnrestrictsd R•sortrt•d TURP40veR CAF Dtrnations DonaUens-Other 20,313 20,439 15.208 25,004 9.000 7.5Q0 40.752 9.000 40.212 OTHÈR CMARGES Accountanry fee5 Consultancy fees Publlc Affalr5 Bank charges Fundraislng Costs Web*itp Hostlngi 8rnndln9 ?,500 274 35,213 31 700 4.093 322 17.730 ioi 8,500 I,noo (40.Jii) (81500) (18,152) NET {LOSS)/PRQVIT (1.000) 441 soo 2¥060 6,500 CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report Report to the trusteesl membors of Action Cerebral Palsy On accounts for the year ended 31 December 2021 Charity no (if any) 1165217 Set out on pages I report to the trustees on my examination of the a¢¢ounts of the above charty ('the Trust.) for the year ended 3111212021 Responsibilities and basis of report As the charity's trustees, 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 carrted 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 ststement I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination {olher than that disclosed below ') which gives me cause to believe that in, any material respect.. the accounting records were not kept in accordance with section 130 of the Charities Act., or the accounts did not accord wtth the accounting records. or the accounts did not comply wilh the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a 'true and fairf view which is not a matter considered as part of an independent examination. I have no concerns and have come across no other matters in connection wrth the examination to which attention should Èe drawn in this report in order to enable a prO￿r understanding of Ihe accounts to be reached. Please delete the words in the brackets if they do not apply. Slgned: Date: 10106122 Name: Philip Deane Relevant professional qualification(s) or body lif any): FCCA Address: Units 1 and 2 Field View, IER Oct 2018 Baynards Green Business Park Bicester Oxon OX27 7SG Section B Disclosure Only complete if the examiner needs to highlight material matters of concern (see CC32, Independent examination of charity accounts.. directions and guidance for examiners). Give here brief details of any items that the examiner wishes to disclose. IER Oct 2018