Our partners at the Infantile Spasms Action Network developed the mnemonic STOP to raise awareness of the importance of swift diagnosis for IS – See the signs – Take a video – Obtain a diagnosis – Prioritise treatment. We know that one of the major barriers to obtaining a diagnosis and getting rapid treatment is that General Practitioners (GPs) are the ‘gate-keeper’ to specialist doctors (paediatric neurologists); and we often find that their poor awareness of epilepsy, particularly infantile spasms, is hindering diagnosis.
In a 2019 survey of our support group, the possibility of IS was not considered by the first doctor consulted in more than two-thirds of cases, and nearly a quarter of our families were falsely reassured four or more times. Here are some typical stories from our members:
- “We presented to the GP on 3 separate occasions over the space of a week; initially diagnosed with colic and constipation, it was only on the 3rd presentation that we saw a locum who recognised the presenting symptoms but advised that it was not urgent”.
- “Three days after spasms started, we were told it was startle reflex returning (at 6.5 months). A week later another GP agreed. One more week later another GP said it was nothing to worry about but referred us anyway. A paediatric nurse and a health visitor also suggested it was nothing. It took 10 weeks to get the diagnosis”.
- “I booked an appointment with a long-qualified GP (partner) in our local practice – I felt confident that if anyone had seen these symptoms before it would be him. Sadly, despite looking at the videos, he sent me away saying “I have 3 children, and this is normal childhood behaviour”. Thankfully I trusted my instinct that eyes rolling, head drops, and arms flailing out were not in any way normal! 3 doctors and 6 weeks later we were referred to a paediatric neurologist and diagnosed”.
- “S was dismissed by a GP who said it was her normal startle reflex. We went back 2 weeks later with video footage and concerns about total regression and were advised not to go to A&E – he agreed it was seizure activity, but it wasn’t an emergency”.
With your help we can change this!
We’ve 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 plan to launch this via the RCGP’s Online Learning Environment (OLE) which has 110,000 subscribed learners; with the content being freely available to all UK health care professionals (e.g. GPs, practice nurses, pharmacists, healthcare assistants).
Thanks to our amazing fundraisers this year, and our collaborations with Young Epilepsy and the Childhood Neurology Foundation, most of the funding needed for this project has been secured. However, we have been asking our supporters and some of the employees of Aviva to make up a small funding gap – our initial target of £2366 has now been achieved and we are aiming for a stretch target to keep the e-learning available for longer.
If you’re passionate about improving education and awareness of childhood epilepsy and infantile spasms among the primary health care community, please show your support for this project via our Aviva Crowdfunder. To help reach the target by 12:00am on 20 December 2019, we’d be most grateful for any comments and pledges you feel you are able to make. https://acf.crowdfunder.co.uk/ukinfantilespasmstrust