## The Daisy Garland _‘A journey of hope... for children with epilepsy’_ Annual Report 2021 For the year ended 31st August 2021 ## **Contents** |||**Pages**| |---|---|---| |**•**|**Our Purpose and Aims**|**1-2**| |**•**|**Welcome from our Chair**|**3**| |**•**|**Welcome from our CEO**|**4**| |**•**|**Our work this year**|**5-8**| |**•**|**Structure, Governance and**|**9-10**| ||**Management**|| |**•**|**Financial review**|**11-13**| |**•**|**Forward focus 2021/22**|**14**| |**•**|**Financial Statements**|**15-28**| |**•**|**Tank you**|**29**| _**© The Daisy Garland The information contained in this publication is not permitted to be reproduced, in whole or in part, without prior permission from The Daisy Garland.**_ ## **Our Purpose** The Daisy Garland is a national registered charity working exclusively for children and young adults with drug-resistant epilepsy. ## **Our Aims** 1. To raise awareness about childhood epilepsy, the ketogenic diet and SUDEP (sudden, unexpected death in epilepsy) 2. To fund specially trained Daisy Garland Ketogenic Dietitians to work within NHS hospitals nationwide allowing children and young adults to benefit from this drug-free treatment 3. To provide positive support for the parents and carers of children and young adults diagnosed with drug-resistant epilepsy ## **The Daisy Garland** The Daisy Garland was set-up in 2004 in memory of our brave and wonderful daughter Daisy. Daisy was diagnosd with complex epilepsy when she was 5 1/2 months old. For almost 2 years we battled with one anticonvulsant drug after another, each drug took Daisy further away from us and brought with it more seizures and unwanted side-effects. In January 2000 at the age of 22 months, Daisy started the ketogenic diet - a drug-free treatment which gradually reduced the severity and frequency of her seizures. Tragically in April 2004 Daisy died in her sleep from SUDEP. **1** ## **The Ketogenic Diet** In the UK there are over 60,000 children under the age of 16 suffering from epilepsy. More than 18,000 have what is termed as drug-resistant epilepsy, this means their seizures continue in spite of medication. Recommended in the NICE guidelines the ketogenic diet is a medically recognised and accepted therapy for children with drug-resistant epilepsy. It is important to note that the diet must only be carried out under the close supervision of a trained ketogenic dietitian and a neurologist. Over the last 17 years, The Daisy Garland has been instrumental in bringing the ketogenic diet to the forefront in the UK funding 26 Daisy Garland Ketogenic Dietitians/Dietetic Support Workers (see map below) all of whom offer a free countrywide ketogenic service to children and young adults with drug-resistant epilepsy. **Statistics show just over 50% of children on the ketogenic diet will experience over 50% seizure control, about a third will see more than 90% improvement and about 10-15% will be seizure-free.** **2** ## **Welcome from our Chair** Welcome to our 2020/21 TAR. This past year has been one like no other, a time of great changes and challenges, a period we will never forget. The pandemic caused chaos and like many charities, The Daisy Garland faced great challenges too. Fundraising was brought to an abrupt halt and many income streams stopped overnight. But, despite the upheaval and uncertainty we did what we do best: we kept calm and we carried on. With a 17-year history we knew that our dedicated team would find a way through, and in the midst of the pandemic we addressed additional needs and found new and inspiring ways to help those with epilepsy and their families. I am in awe of our small team who adapted and pushed on through an extremely stressful and trying period. Throughout the multitude of ups and downs and despite the many hardships faced our supporters have been an inspiration, our lifeblood. On behalf of The Daisy Garland team, and the families we help, thank you! Your steadfast support has been nothing short of outstanding and we are profoundly grateful. We look forward to a better year ahead. David Garland **3** ## **Welcome from our CEO** Covid-19 has had a devastating impact on our day-to-day lives and we have all had to adjust and adapt to the bizarre circumstances we find ourselves in. This year the collapse of over 100 confirmed fundraising events brought new and alternative ways of fundraising into sharp focus. Throughout the past year our ‘silver lining’ has been our staff and supporters who have done their utmost to ensure that The Daisy Garland continued to give across-the-board support. During erratic and destabilising lock-downs we managed to keep a ‘business as usual’ policy, and we maintained a high level of support for all the families under our care. 162 life-saving monitor grants were processed and awarded; 247 Ketogenic Welcome Boxes and dozens of Care Packs were dispatched and every phone call and enquiry dealt with swiftly and efficiently. I could not be prouder of my inspiring team or our incredible supporters. As I write, 2021 is already bringing a new set of challenges but I know we will rise to those challenges and we will continue to help to make the world a better place for those with drug-resistant epilepsy and their families. Sara Garland **4** **Our Work this Year** **We funded 2 NEW Ketogenic Dietitians** **3 NEW Ketogenic Dietetic Support Workers** **Ketogenic 656 families supported in Daisy’s Keto Café - our online parent support group** _“Café support means I’m no longer lost and alone. I’ve made new friends and I’m starting to feel positive again” - Rebecca._ **247** **Keto Welcome Boxes dispatched providing all the essentials needed to start and maintain the diet** **46** **Ketogenic cookery videos produced helping and inspiring keto families** **48** **Coffee Mornings and Cookery Days hosted, increasing keto knowledge and confidence** **2 Published articles in Complete Nutrition Magazine** **547 Raising Epilepsy Awareness** **poster packs sent free to families, schools and NHS clinics** **25** **25** Children took part in our new Green Shoots project growing healthy, low-carb keto-friendly vegetables and sensory flowers at home during lockdown. This exciting project p r o m p t e d children to try out new tastes. We will expand on this project next year. **5** **More than 13,000 People benefitted from our support** **Life-saving support 162 Monitor grants awarded helping keep children with complex epilepsy safe at night** **Improving Mental Health 174** Families supported during lockdown through tailor-made Daisy Garland Mindfulness Courses offered free of charge, helping reduce anxiety, isolation and loneliness. Testimonial: _“Intelligent, soothing & inspirational. A real life-saver!”._ ## **Life-saving Support** _“Having a Daisy monitor means Nathan can have prompt care and attention throughout the night, minimising disruption and improving sleep quality. The monitor has given me a psychological boost knowing I can be more timely and responsive when dealing with Nathan’s nocturnal seizures. A big thank you to everyone who helps fund these life-saving monitors.”_ Dayo, mum to Nathan, 11, London. ## **Transforming Lives** _“Thank you for supporting us on our keto journey. I have found a kindness in Daisy’s Keto Café I didn’t even know existed. Being amongst other keto families reminds me I’m not alone. The diet is working really well, Frankie hasn’t needed rescue meds for over 20 weeks! My message to anyone starting their keto journey is: please, please, please stick with it! We’re not seizure-free yet but Frankie’s seizures have reduced from 150 a day to just 1 or 2 a day. Thank you also for our Daisy monitor. This has saved Frankie’s life, not once but twice, and has saved us from many hospital admissions. Thank you for being there for us.”_ Kirsty, mum to Frankie, 5 months, Gloucestershire. **6** ## **Facebook Annual reach 15M** ## **Overcoming Covid Restrictions** Many medical conferences were cancelled due to Covid. We attended two - British Paediatric Neurological Association and Nutricia’s annual Ketoconference. Our dietitians presented at numerous virtual events raising ketogenic awareness both nationally and globally. **On Purple Day (world epilepsy awareness day) 102K** **On SUDEP Awareness Day 30K** ## **Our involvement in the advancement of medical nutrition** We continued to work with management teams specialising in medical nutrition specifically tailored to support children on the ketogenic diet. Families are always keen to trial new products under the close supervision of their ketogenic dietitian. We continue to work and strengthen relationships We continue to work and strengthen relationships with Nutricia, Vitaflo and Ketocare foods and are grateful for their support and for the opportunity for our dietitians and families to be involved in the medical advancement of ketogenic nutrition. **----- Start of picture text -----**
Meet some of The Paskin family
our Purple raising awareness in Stoke-on-Trent
Day 2021
supporters
Esme and her teachers
raising epilepsy Our Patron Jane Asher Raising epilepsy
awareness at their school created a Purple Day awareness in
in Lancashire Showstopper of a cake! Hampshire
**----- End of picture text -----**
**7** The Daisy Garland offer pump-prime funding for specialist trained ketogenic dietitians to work in NHS hospitals from the South-West of England to Scotland and Northern Ireland. Our dietitians provide a much-needed, free, countrywide service for children and young adults with drugresistant epilepsy. We offer funding for an agreed timeframe (usually 2 years) supported through the aid of grant funding until such time it becomes a commissioned service in its own right. It is our policy to raise as much of the required funds as possible prior to committing to a new service to ensure that ongoing future ketogenic funding demands can be met. _26 Daisy Garland funded ketogenic dietitians - countrywide reach (R)_ **8** ## **Structure, Governance and Management** ## **Charity Constitution** The charity is controlled by its governing document, a deed of trust, and constitutes an unincorporated charity. The original Declaration of Trust was dated 23rd August 2004 and supplemental deeds dated 8th October 2004 and 6th April 2019. ## **Trustees** The charity’s Trustees are not renumerated, however their expenses are reimbursed in accordance with The Daisy Garland’s expenses policy. Trustees are recruited through an open selection process and receive an induction on appointment. - David Garland (Chair) - Bernard Garland (Vice Chair) - Gloria Dennison (Treasurer) - Tracy Mclean (Secretary) - Sarah Barker (Trustee) - Kim Byford (Trustee) - Sarah Cole (Trustee) - Victoria Whiteley (Trustee) ## **Staff and Volunteers** Our dedicated team shares a huge passion for the work we do and as we are a small organisation every team member sees first-hand the real difference we make to families. We have 4 office-based staff, this equates to 3.2 full-time equivalent staff (FTE). We also have 40 regular volunteers who assist with service delivery (for example large mailouts), or helping us to raise awareness and funds throughout the UK. ## **Risk Management** > _The information contained in this publication is not_ The Trustees have a duty to identify and review the risks to which the > _permitted to be reproduced, in whole or in part, without_ charity is exposed and to ensure appropriate controls are in place to _prior permission from The Daisy Garland charity._ provide reasonable assurance against fraud and error. **9** ## **Safeguarding** The charity is fully committed to safeguarding and promoting the welfare of all children. We have a comprehensive safeguarding policy which outlines these responsibilities. It also outlines the procedures to be taken when a child may be identified to be at risk of harm, or may require additional support to ensure they reach their potential. The policy is reviewed and updated annually. ## **Diversity and Inclusion** We actively support diversity and inclusion and ensure that all our employees are valued and treated with dignity and respect. Our formal Equality, Diversity and Inclusion Policy is implemented in accordance with the appropriate statutory requirements and ensures that no service user, job applicant or employee is discriminated against either directly or indirectly on the grounds of age, disability, gender reassignment, marriage and civil partnership, pregnancy or maternity, race, religion or belief, sex or sexual orientation. **10** ## **Financial Review** The statement of financial activities for 2021 shows total incoming funds were £326,583 (2020 £314,049) a 3.9% increase. Total outgoing funds were £224,022 (2020 £137,300) a 63.1% increase, giving rise to net incoming funds of £102,561 (2020 net incoming funds £176,749) for the year. It was a positive sign that incoming funds showed an increase compared to 2020. Although certain income streams were hard hit - particularly fundraising events - our diverse funding sources and success in securing Covid-19 emergency grants contributed to the overall increase. However, the impact of the pandemic on fundraising activities is still being felt so in line with the imposed restrictions we have adapted a number of our support services and NHS funding projects. Throughout the pandemic the charity was quick to adjust and adapt providing virtual delivery of support services and group events. Covid-19 has had a devastating impact on our day-to-day lives, resulting in a 24% increase in families seeking our help; as a result we were unable to furlough any staff. **Our dedicated team working from home during lockdown. Business as usual - no families were left wanting or waiting.** **11** ## **Financial Review (continued)** Throughout lockdown The Daisy Garland managed to keep ‘business as usual policy’ allowing us to maintain a high level of support for those families under our care as well as new families seeking our help. No one was left wanting or waiting. ## **Reserves Policy** The Daisy Garland exists to support children and young adults with drug-resistant epilepsy and their families. The Trustees consider it prudent that unrestricted reserves should be sufficient to cover the loss of all funding incomes to enable the operation to continue for a minimum of 12 months whilst alternative replacement funding is sought or activity is adjusted to reflect likely future income. The Trustees confirm that this objective was met throughout the year. **12** ## **Financial Review (continued)** ## **Public Benefit** The Daisy Garland Trustees declare that the objectives and activities of the charity are of clear public benefit. **The Daisy Garland remains resourceful and cost-conscious at all times.** **13** ## **Forward focus for 2021/22** Following on from our 2019/20 strategy we will be focussing on the following priorities for 2021/22: - Increasing support for families nationwide who have a child with drug-resistant epilepsy - a life-threatening condition - Increasing the number of monitor grants we provide in order to reduce risk of SUDEP - Continuing to support 26 NHS ketogenic services countrywide - Launching our Green Shoots project improving mental health and well-being for the whole family - Expanding our Mindfulness program to include parents/carers and health professionals associated with The Daisy Garland - Updating our charity website, and monitoring, optimising and reporting on site performance to ensure improvements in website traffic, conversions and time-efficiencies - Review and develop staffing structure - Sustainability - continue to work towards becoming a more environmentally-friendly organisation Approved by order of the Board of Trustees and signed on its behalf by David Garland, Chair **14** The Daisy Garland Unaudited Financial Statements 31 August 2021 THOMAS WESTCO Chartered accountants Plym Hi)us& 3 lon9b￿ge Road Marsh Mills Plymouth PLe 8LT 15 Fknar￿I Slal•rngrts Yw •ndwd 31 Auws12021 Trusteel reFQrt 17 Stsiem8nloffinar*ial •Si¥ib8S Not8str> th&f￿artIal sta1￿￿￿ 16 Thè Daisy Garland Twstees'AnThual Report Year ended 31 August 2021 31 Jw7u*￿21 nnsA1 &A2 Dart To TQ9 SAL MrB Gathd MsSC¢ K 8ylyd th SB*kqr Kthclty FCA PL6 8LT TRUJTEE3REPCffTIITrUT %teeSby. k*DGart Trustee Trxy 17 The Daisy GarlarKI Independent Examiners Reportto the Twstees of The Daisy Garland Yeai endtd 31 Auyust 2021 chanVI l(Ythe yearerthd 31 Aw12021. R•$pon$l￿1lUtS ￿ I￿$ ol rewrt xcordartywth rhe rewrfer(entsc4meCh•*Skl 2011 Iv* Act I I repffi In regpe¢t ot My exaThiatKAI tst me Tru*SaWyrt4c￿ w ww3e¢tDI 149 ofmg 2011 t In caryng wl my examatw I tknpd t*e(l￿ by ctynmiSSv>l und¥ g4(kn 14515XblCrfIMP Inthp•ndMt•MmlMrfsst•l•rnpM attouthno kept iespect cl Tr￿l as rewled by sectyth) 1* crf me Aa". or 2 theacctrJntsth)Mt 3 the3CC￿nts4O not c¢xnFty wrth the IBqLYetwl5(rTh￿￿Iry tr￿￿ ￿ ￿rnie￿l of acc￿ntS set Ixtt in tho Chth ifvu(xwrf5 ReFKrt51 2￿8 other than requIre￿rnt that the &ttsJnts we a l[L￿ atxl vjew L% txrt a c1x1*&￿ed as P•1 ofan ulclay FCA Ind¢peno•it Ptyrn House 3 Lorybrityje Road Klarsh Mil Ptytrn(￿th DBV PL6 8LT 18 **The notes on pages 21 to 28 form part of these financial statements** **19** ## **The Daisy Garland** **The notes on pages 21 to 28 form part of these financial statements** **20** The Daisy GaTlarKI Ilot•s to the Financial Stat•m•nts Year ended 31 Auyust 2021 enbty * a Ewa arf w*$ ial Stwthtd RepULl￿ Of1rda￿ IFR5 1021 (Ch￿1 SORP IFRS 10211 CYWi¥kt))11. F￿n0 I￿¢￿j￿*¥a 21 The Daisy Gartand Notes to the Financval Stat•rn•nts￿￿￿ Yeat ended 31 Auyust 2021 A¢¢tyJMng r￿Q￿r I IQ the thatty w me a￿nI Can be rewtt r(eagw The Exwdrtufo ij on ￿ ¥£n*bwasa I￿ Inthths •iy finawaI*l￿esIQ.￿th rt Tewes 22 The Daisy Garland Notes ￿ the Financial Ststemwtsftwww Year ended 31 August 2021 A¢¢¢wnwng p(dI(*•K￿ty Irthrnvrts m¥me ￿11 InwepaywL%ua ¢a* In ¥thKh ItatLse5. 2021 Donaua 121.L 35.286 1￿.38¢ Grants 17,534 13,or6 17.534 13.W 23.8th) 67.79J 67.750 188.848 89.626 278.474 Dcffjall¢xvA 73.627 12,6 86.287 23 The Daisy GarlarKI Notts to tht Flnan¢k•l Year ended 31 August 2021 Grants 23905 51.814 >J 749 5T.814 30.749 9).879 256.29) fyaDlS. urwestK 79 131.162 125,128 FLvVts 43.622 43.622 OthEf tr¥dlry ath¥ftle ch11￿5￿ps￿¥ 3ml 2.878 2.878 F￿5 1.126 15.530 15.530 15.271 15.27T 24 The Daisy Garland Notes to tl* FinarKial Ststements(rfy Year ended 31 August 2021 FLrfS 2021 59,127 166.118 42374 I8￿14 125. 82.927 308.492 FLThts 2DJ) 68.878 53.145 47J95 5,750 125,128 13.1051 122.023 2021 1fj6.)18 42.374 ￿￿,4 122.023 T*Xal￿21 Tola120J) 11.034 15288 6019 5.191 11.034 15.280 6.019 5.791 1,188 10.268 15.672 Pienmses lknl off Finar*e costs ¢¢8t& 6.432 3.￿3 42J73 41373 53.144 1.Q%) 2,1( 1.020 25 The Daisy Garland Notes to the Flnancfjal StatementsKtyw Yoar •nd•d 31 August 2021 13. &aftcasts 2020 fj8.341 3.T34 69,YJ1 72.075 TJ,1 75% P*rt Sutwtr 11% 14% Ad￿￿j ytar 4 14. Tiu*ie* Itrnun•rnV¢Il *d¢ApBrrt iece[v￿lbYkne tr￿tEe5. 10. Stocks 2.919 8.917 17,729 2Q2D 1.140 778 e&,236 Sooal 5ecwty* Qthgltaxes 11316 16.T24 .154 26 The Daisy Garland Not￿ to the FInan¢￿1 siatementsKw*x• Year ended 31 August 2021 43 132 39.799 coMrltsthnpthwas£3.73412020.E3.659 At 31 Aullust 2 3. 1141 095 .725 31 A￿U￿t 20 2DI9 127.114 1￿.¥21 J3.863 At 31 Auw¥t 20 Restrkttrj FUMS £.e99 31 ALSLryt xi I￿.129 1125.1281 27 The Daisy Garland Notes to the Flnanclal Statements Year tnded 31 August 2021 Resi1￿ F￿n0* 20 ¢l￿ntag$e C￿edrt￿ lessow 1 y CTedrtCng[￿t￿rtt￿n 1 Neiasxt 59.561 116.T241 143.1321 466.280 143 1321 393.725 4r*,424 2020 411 816 16&1531 I39.￿) credrtThs le58 l ya¥ Credrtryygrt*terthan l y¢¥ 16B.1531 I39.8￿)) 22. Rel*d￿e# p￿edt0th8l1￿. 20 S Gart¥￿ S* 27.( 28 ## **Thank You** Thank you to all the fundraisers, donors, volunteers, companies, schools, community groups, trusts and foundations who kindly supported us this year. We couldn’t do what we do without your generosity and support. **29** ## **Welcome To Holland** I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this… When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide-books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, and the very lovely things... about Holland. _Reproduced with the kind permission of Emily Perl Kingsley. ©1987 All rights reserved._ _**‘A journey of hope... for children with epilepsy’**_ **The Daisy Garland, Units A1 and A2, Dart Marine Park, Steamer Quay Road, Totnes, Devon TQ9 5AL** **Telephone: 01803 847999 Email: info@thedaisygarland.org.uk www.thedaisygarland.org.uk** **Facebook: The Daisy Garland Twitter: @thedaisygarland Instagram: thedaisygarland** **Charity Registration No: 1106530**