An epilepsy team in Luton has been shortlisted for a national Health Service Journal award for its pioneering work to make life easier for children living with complex epilepsy.
Over the last two and half years the team has been working on a ground-breaking pilot that makes life easier for children living with complex epilepsy. Now the team has been rewarded by being shortlisted in the Using Data to Connect Services Award category at the forthcoming 2022 Health Service Journal Awards. They are also finalists in the recently announced Patient Experience National Awards for 2022 with their entry in the category Integration and Continuity of Care.
The epilepsy team is made up of members of staff from Luton and Dunstable University Hospital and their colleagues from Cambridgeshire Community Services. It is led by Usha Panchal, Clinical Pharmacist and Complex Paediatric Lead from the Bedfordshire, Luton and Milton Keynes Integrated Care Board.
The team has been collaborating with the parents of their young patients and partnering with Patients Know Best – a social enterprise and technology platform – on a childhood epilepsy pilot project designed to help health and social care providers bring together patients data including medical information, care plans as well as self-generated data from patients – such as their seizure diaries and seizure videos.
Commenting on the being shortlisted for two national awards, Usha said:
“By working with Apollo Medical Software Solutions and with the permissions of our patients’ parents, we are able to extract data from their local GPs’ systems and enable patients and their families to access their medical information instantly.
“Patients are able to access information about their condition remotely, including about medications, care plans, allergies and medical history using the Patients Know Best platform.
“The results have been positive from all parties involved, including clinicians who are find themselves better informed and parents, who report that their family lives are transformed.”
This is best explained in the words of one participating parent who said:
“One of the most useful advantages of Patients Know Best is that when we go away from home, should our daughter be admitted to an unfamiliar hospital, it is a comfort to know that I have her complete medical history at my fingertips…as before it was a major concern to me and involved taking a lot of paperwork and folders wherever we went.”
“In addition, a part of the platform translates languages. This will be particularly important when we go to Disneyland Paris in October. The thought of explaining her condition to a French doctor would have been a reason not to go. But we can now! This shows the positive impact Patients Know Best has for us as a family and it helps us to enrich Lily’s life experiences.”
Mark Thomas, Chief Digital and Information Officer, Bedfordshire, Luton and Milton Keynes Integrated Care Board, said:
“Our ICB digital strategy begins with a resident centred approach. This service shows if we can listen and co-design services with all the stakeholders involved we can really make a positive difference. I am delighted that the hard work from everyone in such a key area has been recognised, not only for innovation but for the outcome to the families.”
The next stages for the team’s awards chances are to attend the Patient Experience Network (PEN) finalists’ event at the University of Birmingham on Wednesday, 28 September. And to appear before the Health Service Journal judging panel via Zoom on Monday, 3 October in their bid to become winners at the HSJ awards in November.
Are you a parent of a child with epilepsy?
If you are a parent with a child aged 0 to 18 years with epilepsy living in Luton, please get in contact about taking part in the Childhood Epilepsy Pilot Project, which aims to make your child’s care easier and faster. To be able to join the project you will need to be registered with a Luton GP. Call 0333 4050079 to register.