Message from the Chair
The year ending 31st July 2022 was marked by enormous achievements and successes despite a backdrop of unprecedented challenges in recent times, proving the resilience and skill of our staff teams.
The year started boldly with the launch of our new diagnostic suite, and we revealed to the world the first children’s OPM-MEG brain scanner and lightweight shielded room, specifically designed for children. We were incredibly proud to unveil this new technology, which will transform the diagnostic experience for children and young people with epilepsy.
More than eighty guests joined us for the unveiling in a COVID-19 safe environment, with the event attracting much interest in the media and through our social media channels. We are particularly grateful to the Wolfson Foundation for their generous support for this innovative development.
This buoyant start to the year continued when we refreshed our new brand identities for our special education offer, St Piers School and College and the parent charity, Young Epilepsy.
This is captured in a new proposition for the organisation: Together We Create Possible. This resonates with the feedback from many young people with whom we work, who tell us that too often they are told what is impossible because of their epilepsy.
Throughout the year in a difficult external context, not least due to the ongoing pandemic, this statement became increasingly apt as we delivered significant progress on all fronts to help more children and young people with epilepsy and other complex needs. A positive by-product has been that our online content has grown considerably in its range and reach.
The biggest challenge we faced throughout the year, as we came out of COVID-19 restrictions, was in recruitment. We felt the impact of staff shortages in all areas, but most acutely in St Piers School and College and their residential services, where like many providers, we struggled to maintain numbers of Student Support workers. However, with the support and flexibility of parents, our services were able to continue.
I want to thank all those parents, and students, for bearing with us and thank our staff for their dedication, perseverance and hard work in these difficult circumstances. In January 2022 we held another successful Research Retreat. Due to COVID-19, this as for the second time, a virtual event. Overseen by the Prince of Wales Chair of Childhood Epilepsy, Professor Helen Cross OBE, our research partnership with Great Ormond Street Hospital and the UCL Great Ormond Street Institute of Child Health continues to go from strength to strength. 2021 saw us extend our global reach by joining the International Precision Child Health Partnership consortium alongside hospitals in the USA, Australia and Canada.
Our #OnTopOfEpilepsy mental health campaign continued to build momentum through the year and reached its peak with the launch of an online petition calling for health leaders to include mental health screening and support in epilepsy care. We were delighted at the public response, with 10,800 people signing the petition.
None of our achievements could have been possible without the support of our partners, funders, supporters, service users, students and their families. Our heartfelt thanks go to them all. We are especially grateful to have the continued support of the Wolfson Foundation, Fidelity UK, the GE Neville Foundation, the Garfield Weston Foundation and the Bernard Lewis Foundation, enabling us to provide vital services for young people across the UK. Just recently we have had the positive news of a significant National Lottery Community Fund grant, which will enable us to extend our support even further.
As we enter our 125th year of services on St Piers School and College campus, we look forward with optimism to the outcome of our joint planning application with Audley Villages to redevelop and enhance the estate’s environment.
The partnership will generate essential funds to be invested in St Piers School and College campus facilities for young people and ensure we can build a sustainable future for the specialist services we offer.
Finally, I wish to thank my fellow Trustees for their support throughout the year. We said goodbye to our Young Trustee Olivia Salvati, whose contribution was much appreciated. We wish her all the best in her future career. As her replacement, we welcomed our new Young Trustee, Joe Paternoster. I wish him well in his new role.
Jane Ramsey Chair of Trustees
Chief Executive's Review
This year, we reached the halfway stage of our five-year strategy. At this midway point, it is right that we take stock of how far we’ve come and how much we still need to achieve.
Our strategy
Despite progress in many areas, young people with epilepsy still face challenges. Early results of our 2022 school support survey tell us that too many children with epilepsy are still not fully included in education, and that many teachers and professionals do not have the necessary training to confidently support these young people.
Findings of the most recent Epilepsy 12 audit show that around one-third of children and young people diagnosed with epilepsy do not have an up-to-date care plan in place. Initial diagnosis still takes too long, with only 28% of eligible children referred for surgery evaluation in the first year.
Transition support into adult services still varies too much across different NHS regions, and mental health is still not routinely screened for or supported in epilepsy care. In our own 2021 survey into the mental health and wellbeing of children and young people with epilepsy, 77% of young people said that living with epilepsy has had a significant impact on their mental wellbeing. This was reinforced by the strong response to our petition to address NHS services in this area.
In the light of these challenges, our strategy remains as relevant as ever. Our job is to stand up with children and young people with epilepsy, advocating for their right to the highest standards of care and education.
In the pages that follow, you can read more about all we have achieved towards our goals. I would like to thank all the staff, students, patients, service users, parents and supporters who have helped to make this possible.
Our brand
As our strategy developed, we felt our brand proposition didn’t articulate clearly enough why we exist, who we are and what we do. On pages 10–12, you can find out how we went about refreshing our brand.
A key outcome of the brand refresh was to redefine our core offers into those of Specialist Education, Health and Research, and Voice and Support, which we feel better reflect our main areas of reach and impact. At the core of everything we do is our determination to create a society here children and young people with epilepsy are enabled to thrive and fulfil their potential. We now have a compelling brand identity to support that ambition.
Our offers
Working with young people has to always be at the heart of all we do. Our Young Reps, Young Trustees and young supporters play an active role in setting the policy agenda and developing our services to bring about the change they need.
Young Reps have been taking part in the newly formed NHS England’s Epilepsy Oversight Group to make sure that, in the coming years, the health service prioritises: access to specialist care, regional variation, mental health support and transition experiences affecting children and young people with epilepsy.
Our Specialist Education at St Piers saw 157 students attending the School and College through the year. Numbers were a little down on plan down due to difficulties recruiting enough support workers. Sadly, the post- COVID employment market has been a challenge for many providers in the care and special education space, but we are working hard to attract these much-valued staff.
In the last academic year, the School team has worked hard to embed a high-performing culture across the staff and student body. This year, we remodelled the curriculum and assessment process to make sure they better complement each other and provide a more coherent learning structure that fully meets our learners’ needs.
The College team has been working to improve how we act on students’ views and concerns. In July 2022, students took part in research headed by the National Association of Specialist Colleges (Natspec) Student Voice Parliament. The College team was also delighted to maintain our status as an Inclusion Quality Mark Centre of Excellence. St Piers School achieved the School Games Mark Gold Award and flagship status.
Our Health and Research offer now proudly includes the cutting- edge diagnostic technology, optically pumped magnetoencephalography (OPM-MEG), with clinical evaluation progressing well through the year. We anticipate being able to offer the service to children and young people with epilepsy in early 2023.
We gratefully received the second payment of funds from The Wolfson Foundation to complete the OPM-MEG installation and launch, and we were delighted to be supported by Morgan Stanley, who adopted us as a partner charity for their pro-bono Strategy Challenge. Thanks to their work, we now have a clear roadmap of how to take this exciting new diagnostic service to market.
Our health service had a more challenging year, with COVID-19 and staff shortages leading to a lower bed occupancy rate in the Assessment and Rehabilitation Unit. We’ve put a recovery plan in place and appointed a business development manager to help build income for this area in the coming years.
Our Voice and Support work continues to grow strongly, with new products and services being developed across the areas of inclusion, support, participation and engagement, and our developing digital services.
We were delighted to receive significant funding towards this work from the Garfield Weston Foundation, the Fidelity Foundation, The Bernard Lewis Foundation and the National Lottery Community Fund.
The ‘Voice’ element of this offer works hand in hand with our strategy to amplify the voices of young people with epilepsy, to listen to them and enable them to tell their story, and advocate for change. We’ve made real strides this year in our influencing and policy work.
We’ve been working hard to improve equality, diversity and inclusion (EDI) at Young Epilepsy. We introduced a new EDI strategy, published the first EDI newsletter and established a working group called ‘Shine’, who meet regularly, share news on EDI issues and contribute to the strategic plan. We achieved Level 2 as a Disability Confident employer.
Mark Devlin Chief Executive
St Piers
125 anniversary
The year ahead will see Young Epilepsy celebrating a milestone anniversary for St Piers School and College, its Special Education offer. For 125 years, the lives of children and young people with epilepsy, autism and other complex needs and disabilities have been transformed through the specialist care and support provided.
From its inception, St Piers has pioneered an approach to education focused on developing empowered, happy young people, who can fulfil their ambitions in a nurturing environment with purpose and self-belief. Our thanks go to the generations of staff, young people and families who help make this a uniquely special place.
We look forward to building on the long history of St Piers School and College estate, its services for young people and its place in the local community in the rapidly changing times ahead.
A challenging year for the workforce
After emerging from the COVID-19 restrictions, we still experienced high levels of staff absence due to the virus and other causes. In 2022, fuel shortages and queues at the petrol pumps made it difficult for some of our staff to get to work. Russia’s invasion of Ukraine continues to affect energy and fuel costs, with everyone feeling the impact of the rising cost of living.
To support staff through the cost-of-living crisis, we introduced several initiatives during the year. These included free meals for a month in our staff canteen, an annual pay increase, market rate pay uplifts for frontline staff and a Christmas bonus.
Throughout the year we’ve focused on staff health and wellbeing, giving this focus through a Wellbeing Strategy. Our Wellbeing Hub offers helpful information through links to videos and other resources on mental health and wellbeing support. We’ve also increased the number of Mental Health First Aiders across the organisation.
External economic and political factors had a big impact on recruiting to our key worker roles. This was felt most keenly in our education and residential teams. In response, we adapted our staff structures to create more flexible job roles across all settings, combining support worker roles across education and residential services to create a ‘learning support worker’ role.
We also moved to more flexible contracts and working patterns and enhanced pay structures, and opened up clearer career pathways for staff. As a result, our recruitment pipeline for 2022–23 looks much stronger at the start of the new academic year. Reduced vetting times also allow us to get staff on board more quickly, and we now have a licence for overseas recruitment too.
The year ahead
2022–23 looks to be equally challenging as we, and the general public, face the cost of living and energy crises. We know that any economic crisis has a disproportionately greater impact on people living with a disability3. But we’ll make sure that young people with epilepsy, and their families, continue to get the support they need through our digital information channels, face- to-face support and signposting to other services and sources of help.
We’re doing all we can to reduce our own energy usage without negatively affecting the welfare of our students, staff and other users of our services. We’ll continue to fundraise and do all we can to mitigate any fall in voluntary donations as our donors feel the squeeze on their disposable income.
A key component of securing our future financial sustainability is redeveloping the St Piers campus with our development partner, Audley Retirement Villages. If our planning application is successful, we plan to invest funds from this sale in St Piers’ infrastructure and facilities for students, which will significantly reduce ongoing maintenance and other overheads.
Specifically, these funds will pay for an extension to the College, providing more classrooms for students and creating greater capacity for placements from the local authorities, who fund these students. Overall, the lower capital maintenance spend and higher income will underpin future financial sustainability.
We are Young Epilepsy
For 125 years, we’ve been transforming the lives of children and young people with epilepsy. We’ve led the way in an inclusive, progressive and nurturing approach to the education and support of children and young people with epilepsy. Epilepsy can be one of the most frightening and isolating conditions a child can experience.
There’s a loss of all sense of safety – not knowing when and where their next seizure will happen, who’ll be there and whether they’ll be hurt. Today, more than ever, Young Epilepsy is dedicated to standing up with and for children and young people with epilepsy. We’re here for them. It’s our job to listen and work with them so they can fulfil their potential.
Our renowned health and medical research partnership has contributed greatly to international medical breakthroughs and improvements in diagnosis and treatments.
We campaign for children’s rights. We support young people in school, college and university. We deliver cutting-edge health services and provide innovative tools, information and practical help for living everyday life. Together we create possible.
Our values
• Young people are at the heart of what we do
• We are courageous and ambitious for change
• We work together to make a greater difference
Our programmes
Together, we can create a society where children and young people with epilepsy are heard and can live happy, fulfilled lives.
- Voice and Support
Campaigning for children’s rights, supporting them in school and college, and providing innovative tools, information, and practical help for living day-to-day life. - Health and Research
Our research programme exists to ensure the best outcome for every child by optimising diagnosis, treatment, and support for all aspects of childhood epilepsy - Specialist Education
An innovative and creative environment for children and young people with epilepsy, autism, and severe learning difficulties
In 2022, we updated our brands to better express who we are, what we do and what we strive to achieve. In response to our different audiences, we developed two distinct brands that can work independently but also come together to form a brand family.
Young Epilepsy
Not enough people understand epilepsy or how it affects children and young people, and we need a brand that will help change that. Young Epilepsy’s purpose is to inform, educate, inspire and engage the nation through young people with epilepsy living ambitious and fulfilled lives. To achieve this, the brand needs to be a platform for young people and children to have a voice and be heard. Inclusivity and shared experiences are key to empowering young people, enabling them to be the voices driving us forward.
Our new logo tells a powerful story. The letter ‘Y’ stands for young people, because we’re here We’ve led the way in an inclusive, progressive and nurturing approach to the education and support of children and young people with epilepsy. Epilepsy can be one of the most frightening and isolating conditions a child can experience. There’s a loss of all sense of safety – not knowing when and where their next seizure will happen, who’ll be there and whether they’ll be hurt. Today, more than ever, Young Epilepsy is dedicated to standing up with and for children and young people with epilepsy. We’re here for them. It’s our job to listen and work with them so they can fulfil their potential.
Our new logo tells a powerful story. The letter ‘Y’ stands for young people, because we’re here for all young people with epilepsy – listening to them and working with them to fulfil their potential.
Within the ‘Y’ there is also the letter ‘e’ for ‘epilepsy’, which also forms a speech bubble. The speech bubble is at the heart of our brand because it represents the voices of young people standing up with them for their rights and making sure that they are always heard. We work in partnership with them.
St Piers School and College
St Piers School and College is the Specialist Education arm of Young Epilepsy. St Piers has a different purpose – to create an environment of growth, where young people can thrive and become a valued part of their community.
St Piers needs a brand that brings to life the community and sense of belief created by the coming together of the students and the people who work there. That’s what makes it such a special place.
The purple figure at the centre of the logo represents a student. On each side are the specialisms that make up our multidisciplinary team. The colours stand for our four primary disciplines of education, therapy, medical and caring.
Our multidisciplinary team works closely with young people to create a personalised, inclusive and nurturing environment. In the logo, their bodies form four coloured arrows, indicating positivity and progress for every student.
GROW, NURTURE, THRIVE.
How we do things...
A powerful brand is vital. When refreshing our brand, it was essential that the voices of the people we represent, and those we need to engage with, were heard.
Our brand identity must cut through all the noise and messages we are bombarded with every day. But it was also important to spend our funds wisely, with every penny spent on the brand having a purpose and a return.
With the support of a small but mighty brand agency, Young Epilepsy staff carried out the audience research while reshaping our marketing plans for the year so we could refresh both brands without spending any additional budget.
Voice & Support
Zaid was first diagnosed with epilepsy aged nine. Now 18, he has both absence and clonic seizures that can last for several minutes.
“I first met Alex when he came to my school for a meeting with my parents& headteacher. I was 11 at the time and things had got really bad.
“I was being bullied at school. I couldn’t admit to my parents that I was feeling suicidal. Alex gave me his number and said to call any time.
“We had conversations over the phone and text messages. We went to see the GP together as a precaution. They gave me some tablets that didn’t help and some leaflets that I thought were useless. Stuff that’s online. Things I could print out myself.
“The only thing that was working for me was me offloading to Alex because he was an outside person. And I thank God I found that one person who actually gets me.
“Alex helped me to turn what’s negative into a positive and that’s really helped me. Because I used to see things in a negative way and always overthink things. And now that’s all changed. Slowly, slowly – but I see things positively now.”
Children with epilepsy have a right to be heard. We’re here for them.
The Voice, in our Voice and Support programme, ensures children and young people are at the centre of all we do. We are pushing the boundaries to make sure their voices are heard and respected, and their ambitions realised.
We consult with children and young people with experience of epilepsy, including communities that are hard to reach or seldom heard, to make sure our products and services are accessible and meet the needs of all children and young people with epilepsy.
Our Support services build on years of listening, learning and expertise, to offer unique, holistic and tailored models of support.
Throughout the year, the Youth Development and Support team, alongside the Policy and Advocacy team, have worked across four key areas:
- Youth engagement and participation
- Policy, advocacy, and campaigning
- Support and inclusion
- Digital services
Youth engagement & participation
We have two core participation groups of young people who advise on our work and support our content creation, they are Young Reps and the Young Supporters. They share their lived experience and what’s important to them on behalf of the wider population of young people, many thousands of who engage with our digital output. We also have two Young Trustees on the Trustee Board.
We’ve achieved ‘Active’ status for Hear By Right accreditation and have adopted the principles of ‘Flagship’ status and hope to achieve Flagship accreditation by 2023. Throughout the year, the Young Reps and members of the Young Sup- porters Network took part in organisation-wide activities, including:
- Attending the NHS Oversight Group and Working Group meetings as part of the #OnTopOfEpilepsy campaign
- NHS Working Groups, covering Mental Health, Variation in Care and Tertiary Care; the NHS teams have found their input extremely valuable to the process
- Taking part in the Revealing Reality’s user experience research for the Digital Solution Project
- The NHS Epilepsy Transformation Programme
In July 2022, we held the first Young Rep in-person meeting since COVID-19 restrictions ended. Young Reps travelled to the London office to meet and plan for the top priorities in 2022–23.
Policy, advocacy & campaigning
The #OnTopOfEpilepsy campaign continued through the year, culminating in an online petition calling on healthcare leaders to include mental health screening and support in children and young people’s epilepsy care. More than 10,000 people signed the petition.
As part of the #OnTopOfEpilepsy campaign, we published the results of our survey on young people’s experiences of epilepsy and mental wellbeing.
Of those young people who responded, 77% said living with epilepsy has had a significant impact on their mental wellbeing, including their thoughts, feelings and how they’re able to cope with everyday life.
Our campaign helped us build a strong dialogue with NHS England and inform the work of their newly established Children and Young People’s Epilepsy Oversight Group (EOG).
Our Chief Executive was invited to co-chair the EOG and we continue to facilitate and represent young people’s voices across the group’s work, with several of our young supporters participating in meetings.
Evidence from our young people’s surveys helped inform the EOG’s four areas of focus: mental health screening and support, access to specialist care, improving transition to adult services, and addressing the variations in care across the country.
We contributed to the development of the new NICE guideline for epilepsy care and our Head of Health served on the guideline committee.
In response to Young Epilepsy’s written submission, NICE ensured that the remit of epilepsy specialist nurses now includes supporting professionals in education settings.
As part of the Children and Young People’s Health Policy Influencing Group, we achieved significant gains for children and young people through the Health and Care Bill. This included a legal requirement on the new Integrated Care Boards (ICBs) to set out the steps they will take to meet the needs of children and young people.
In June 2022, we launched a survey on epilepsy support at school for young people and parents, which received a record 1007 responses – 200 from young people attending school. We’re analysing the results to help shape our future education policies and priorities.
We’ve worked closely with partner organisations in the Health Conditions in Schools Alliance to highlight the needs of children with long-term conditions as part of the Government’s SEND Review.
We’ve called for the Government to ensure all children with long-term conditions have an individual health plan (IHP) at school, and also to require schools to publish on their websites their policies on supporting pupils with medical conditions.
Over the past year we’ve helped strengthen guidance to improve support for children with health conditions, including government guidance for education settings on school attendance and safeguarding, and NICE guidance on social and emotional wellbeing in schools.
This year, we were provisionally approved as an Associate Chapter of the International Bureau of Epilepsy (IBE), which works to improve the social conditions and quality of life of people with epilepsy and those who care for them.
We’ve also continued to work with other groups, including: the Specialised Healthcare Alliance, Children and Young People’s Mental Health Coalition, Council for Disabled Children, Disabled Children’s Partnership, Special Educational Consortium, Schools Wellbeing Partnership and Youth Employment Group Disability Sub-Group.
Download the full report here.
