UKIST AGM report

Attendees: Belen Robbins, Jenny Rawling, Samia Sanders, Clare Garvey, Louisa Freer, Alice Goldhill, and Michelle Scoffield.

1. UKIST ambitions
Trustees unanimously agreed to maintain the current charity ambitions, with no amendments:
– Educate – to improve awareness of the symptoms of infantile spasms amongst the medical
profession and the public (because early diagnosis is key);
– Support – to provide a vital network of support to parents and carers with children affected
by infantile spasms; and
– Research – to support the advancement of clinical research into infantile spasms

2. Education
Key topics discussed:
– Awareness for primary healthcare professionals – in partnership with the Royal College of General Practitioners (RCGP) we’re developing new training for primary healthcare professionals, which will launch in 2020. Despite COVID19 this remains broadly on track.
– Trustee participation at conferences

3. Support
Key points discussed:
– Zoom sessions – positive feedback received on this new channel. Regular sessions to be organised going forwards.
– Regional support network – a number of regions have successfully organised local events to connect families affected by infantile spasms. With support from our Regional Parent Ambassador (RPA) group, led by Adrian Hutchings, our hope is for this to continue and we extend our thanks to Adrian and the RPAs.
– Grants – our UKIST grant scheme is made possible by the generosity of our fundraisers and kind donors; and we thank them for making such a positive difference to the lives of children and families affected by infantile spasms. The scheme will continue in 2020-21, with grants available for special needs equipment (up to the value of £1000), or therapy and activities that will assist children in their recovery or development (up to the value of £250).
– Size of support group: with c.1250 members, we continue to monitor the size of the group to make sure people feel able to share thoughts and concerns in a safe environment.
– Further support for families: agreed to refresh information on services / resources / support available post-diagnosis.

4. Research
Key topics discussed:
– Muir Maxwell – in 2018 UKIST donated £2000 to the Muir Maxwell Trust. This donation was specifically ringfenced for the five-year genome research project (also supported by Epilepsy
Society, UCL and UCLH with Genomics England). The focus of the work is the genetics of epilepsy, the ultimate goal of which is for whole genome sequencing to be part of clinical practice in epilepsy. The expectation is that this work will bring important, personalised, valuable additional data to the understanding and management of each individual’s epilepsy.

– Future donations – no immediate opportunities to support research in to infantile spasms specifically. However, the Trustees agreed that funding research in to childhood epilepsy more generally was essential, in order to better support those affected by infantile spasms in the longer term.

5. Charity structure and ways of working
– Team Structural Moves – Three of our founder members; Amy Melillo, Jade Bamber, and Lisa Martin take on ‘Friends of UKIST’ steering roles and we thank them for their dedication to the management of the charity over the last three years, going forwards we will be grateful for their experience, advice and support for the charity.
– Trustee appointments – Trustees agreed to strengthen the team to a maximum of 10 over the coming year.
– Ways of working – the Foundation for Social Improvement (FSI) has provided the charity with a complimentary summary our strengths, capabilities and areas for future development.

6. Fundraising – remains under review. Opportunities for fundraising in 2020-21 will be limited due
to COVID19.

7. Communications – communications across a variety of channels are going well, with good levels of engagement and support.

8. Budget for 2020-2021
– Full year spend for 2019-20 was in line with the budget set at the 2019 AGM.
– Whilst 2019-20 income was stronger than the previous year (+40%), we expect fundraising opportunities to significantly reduce in 2020-21. With this in mind Trustees agreed a 7% increase in the budget for the 2020-21 financial year, against the following categories of spend:
– Primary healthcare education – including RCGP e-learning
– Family support – including grants, regional networking and zoom sessions
– UKIST donations to research
– Merchandise
– Conferences, trustee learning and development
– Charity management – admin, website, insurance, accountancy, and expenses
– Funds are to be held in reserve to ensure the charity’s essential “run” costs can be covered for at least four years.

9. AOB – initiatives currently ‘on hold’ / for the longer term
– New patient support pack (e.g. Bryn bear / sensory pack / care package).
– Fundraising packs (e.g. stickers)
– A&E / 111 information and education opportunities
– Book to support affected children and their siblings
– AGM 2021 (face to face, pending COVID19 restrictions being lifted)