As an Aviva employee, I'm delighted that UKIST has been invited to join the Community Fund trial... this opportunity to secure much-needed funding would enable us to drive forwards one of our critical ambitions - to improve awareness
of the symptoms of infantile spasms amongst the medical profession, because
without early diagnosis the development outcomes for children can be truly
Infantile Spasms (sometimes known as West Syndrome) is a rare type of epilepsy that occurs in young children, usually under one year of age. About 400 children a year are diagnosed in the UK - including my son Edward, who was diagnosed in June 2016, aged 7 months. This is a serious seizure disorder because a child with infantile spasms has a chaotic brainwave pattern that may cause loss
of skills and brain damage.
The UK Infantile Spasms Trust (UKIST) is a small start-up charity (established in 2017), providing a valuable network of support to families with children affected by infantile spasms. We also work alongside medical professionals to raise awareness of this little-known condition because the symptoms can be very difficult to recognise, and it’s often misdiagnosed as colic / reflux / startle reflex. Unless infantile spasms are recognised and treated early the prognosis for affected children can be very poor.
One of the major barriers to getting rapid treatment is that General Practitioners (GPs) are the 'gate-keeper' to specialist doctors (paediatric neurologists); and we are often finding that their poor awareness of epilepsy in general and infantile spasms is hindering diagnosis.
In response to this, we have been working collaboratively with our friends at Young Epilepsy and with the Royal College of General Practitioners (RCGP) to shape up an opportunity to develop some new training for primary healthcare professionals.
We hope to launch this via the RCGP’s Online Learning Environment (OLE) which has 110,000 subscribed learners. The content
would be freely available to all UK health care professionals (e.g. GPs,
practice nurses, pharmacists, healthcare assistants).
The proposed e-Learning
course will include the following:
- One 5 minute ‘Change your Practice’ screencast on infantile spasms (cost £6,169).
- One module of approximately 30 minutes in length and a pre- and post-course assessment on childhood epilepsy (cost £20,685).
To encourage use of the e-learning, the RCGP team would coordinate promotional activities including course information in member newsletters, social media posts, course preview video, and carousel ads on the eLearning and RCGP websites; and the course would be co-badged with the UK Infantile Spasms Trust. To review effectiveness and value for money, usage reports, qualitative and quantitative feedback, and assessment scores would be provided.
In collaboration with Young Epilepsy we have funds in place to build the 30 minute e-learning module; and with the help of a small grant from the Childhood Neurology Foundation (£3,803), we're almost able to progress with the 5 minute 'Change Your Practice' module... but we have a funding gap of £2,366. Beyond this, our 'stretch' target would include the re-hosting fees so that we can maintain both learning modules for at least another year (£2,500).