UKIST annual meeting report

Attendees: Alice Goldhill, Amy Dowding, Jenny Rawling, Louisa Freer, Michelle Scoffield, and Samia
Apologies: Belen Robbins.

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

2021-2022 reflections – UKIST continues to provide a vital network of support to parents / carers with
children affected by infantile spasms. We’re particularly proud of:
 The ongoing support offered to newly diagnosed families though our Facebook group; and we
recognise the important role that our volunteer group admins and members kindly play in this.
 Ongoing provision of essential virtual therapies – most notably physiotherapy, speech therapy
and support for emotional wellbeing.
 Ongoing award of UKIST Grants for special needs equipment, therapy and activities that will
assist children in their recovery or development.
 Trustees representing our community at various medical networking and educational events.
 “Bryn Bear’s Guide to Infantile Spasms” – remains free to download and is now also available in
hard copy.

Looking ahead – the trustees will continue to focus efforts on the following key areas:
 Support group – with 1800+ members, trustees and group admin recognise the value of having
a diverse group, particularly at different points in their infantile spasms journey. Our primary
focus remains on helping families to secure a prompt diagnosis and the right treatment.
 Grants – our 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. UKIST grants can be used to contribute towards special
needs equipment, or therapy and activities that will assist children in their recovery or
development (to a maximum value of £1000). Families are invited to apply in writing; and
applications are reviewed by the trustees on a monthly basis.
 In person networking and support – trustees are investigating appetite and options for Camp
Mohawk. We also hope to see an increase in localised member-led events across the country.
 Therapies / services for support group – we will continue to provide access to various therapy
services through a combination of virtual lives, virtual on demand, and in person options.

2021-2022 reflections:
 UKIST was accepted as a key stakeholder for the review of the National Institute for Health &
Care Excellence (NICE) Guidelines “epilepsies in children, young adults and adults”. As a result,
we’ve been working with medical professionals and experts to make sure these guidelines set
out the best possible care and services for children with infantile spasms; and we expect this to
be published in April 2022.
 Our ‘childhood epilepsy’ and ‘infantile spasms’ modules on the Royal College of General
Practitioners (RCGP) online learning platform remain accessible to RCGP members.
 We’ve collaborated with Red Whale GP Updates to launch infantile spasms training to medical
 To increase speed of diagnosis, we continue to raise awareness of infantile spasms among
higher risk groups – particularly children affected by Down syndrome, neonatal / perinatal
stroke, hypoxic-ischemic encephalopathy (HIE), and tuberous sclerosis.

Looking ahead – the trustees have committed significant budget for UKIST-owned video / e-learning
content that can be used to further raise awareness and educate primary healthcare professionals in
a variety of settings (for example GP surgeries, A&E, medical students, health visitors and so on).
Content is likely to include core education, red flags, parent descriptors, NICE guidelines, patient
journeys and first-hand experiences, videos of IS presentation, interactive questions and case studies.

In the last year we’ve been active in influencing the research landscape. Most notably:
 The James Lind Alliance policy setting partnership for childhood neurology research, influencing
future research priorities;
 The ‘Brain development in Early Epilepsy’ project with Kings College London, aiming to establish
markers for future development issues in children diagnosed with epilepsy in their 1st year; and
 An event at the House of Lords – ‘3 Prescriptions in 3 Years: The Failure of NHS Medical Cannabis
Access’. We represented children in our community who have suffered infantile spasms and
have gone on to develop medication resistant epilepsy, often failing multiple AED medications.
The aim of this event was to explore the issues behind medicalised cannabis and highlight the
multiple barriers in place for those families seeking a prescription.

Looking ahead – we remain close to the findings of the International Collaborative Infantile Spasms
Study (ICISS) and eagerly await their next report. We continue to look for appropriate opportunities
support the advancement of clinical research into infantile spasms.

2021-2022 financial year – despite the global pandemic, both income and expenditure were in line
with the previous financial year. Once again, we’ve seen significant fundraising efforts, largely hosted
through our preferred platforms (previously Virgin Money Giving, now Just Giving) – thanks to all our
fundraisers who never cease to amaze us with their challenges!
2021-2022 financial year – the trustees have committed to year-on-year increases in expenditure, with
significant budget now allocated to primary healthcare education, UKIST grant giving, family support
(including regional networking and therapies), website development and search engine optimisation.
Funds are to be held in reserve to ensure essential “run” costs can be covered for at least three years.

We’re delighted to appoint Amy Dowding as a UKIST trustee. Amy has been active in the management
of the support group, represented the charity in the House of Lords and established our scheme to
provide children with supportive seating. Amy’s passion, inventiveness and problem solving are huge
assets to the UKIST team and community.







The Trustees agreed to further strengthen the team over the coming year, with a focus on increasing
diversity of thought and experience – to include additional skills in fundraising, digital marketing, web,
comms, and complex IS needs. We’d love to hear from anyone who’s interested in getting involved –