This is the story of Matthew and his family who inspired the creation of My Health Guide.
Matthew was an adult living with profound and multiple learning disabilities as well as Epilepsy and Cerebral Palsy in Hull. Sadly Matthew passed away at the age of 39 in November 2019.
Matthew’s impact goes far beyond those he met, since he is the starting point for the My Health Guide project. His legacy continues to help many vulnerable people. He will be missed and remembered by many. What follows is the story of supporting Matthew, and how he helped inspire the creation of My Health Guide.
In 2013 Matthew’s parents, Tony and Trish, embarked on a project to record and encapsulate Matthew’s life history and care needs within one single digital document.
Tony took up the story: “Over the years Matthew’s condition has deteriorated and, as a result, his care needs have shifted with time. Sometimes these changes are neither recorded correctly or heeded and serious problems can arise.
“The catalyst came when we bought Matthew an electronic photoframe for his bedroom at the Barchester Castle Care Village where he stays during the week.
“Through dealings with Trish Bailey of Humber NHS Foundation Trust and Ken Pugh, who were looking at developing digital health technologies, it dawned on us that it would make sense to get all of the information about Matthew in one place such as an iPad or android device.
The catalyst came when we bought Matthew an electronic photoframe for his bedroom at the Barchester Castle Care Village where he stays during the week.
“We worked alongside Trish and Ken to take project forward with a template document developed through the existing iBook software.
“Matthew’s Book is an ever evolving document that features five headings; ‘Get to know me’, ‘Growing up and becoming who I am’, ‘My care needs’, ‘Getting on with me’ and ‘important contacts’.
“It is everything you’d want to know about Matthew in one place,” added Tony.
The book had a profound impact on Matthew’s care team at Barchester. Leanne Dixon, one of two support workers to provide Matthew with 15 hours of one to one care daily, said: “We were in tears when we watched it as it paints a far better picture of Matthew’s life and needs than any amount of paperwork could achieve.
“You build a strong emotional connection from the start with a document like this and I can see it providing benefits to many patients who are unable to communicate,” added Leanne.
Since the completion of Matthew’s Book Ken Pugh has gone on to develop ‘books’ for a number of learning disabled patients and has worked closely with London-based software company Maldaba to develop My Health Guide that is integrated with health and care services.
Tony continued “Despite his disabilities and lack of communication Matthew has led a rich life full of experiences and love and we wanted to reflect that. Matthew is a person too. Sometimes that can be forgotten under a weight of paperwork.
“The fragmented nature of the NHS means that it can be difficult to effectively share up to date paperwork about people across different services.
“This brings it all together in one, easy to read, document that features text, video clips and photographs. It gets rid of that ‘not my patient’ syndrome that can sometimes be prevalent,” he added.
We were in tears when we watched it as it paints a far better picture of Matthew’s life and needs than any amount of paperwork could achieve.
Leanne Dixon – Support worker
Matthew’s mum Trish had the final word: “The healthcare system doesn’t really make any allowance for people who will never get better but Matthew has got a really good team around him however there have been occasions when that hasn’t been so and that has had a critical impact on Matthew’s health.
“We’re delighted that Matthew’s Book has gone down so well with everyone and that it is the inspiration for the new My Health Guide app. We’ve done this for all of the other Matthews who need to be heard,” added Trish.
You can meet Matthew for yourself and listen to his Dad, Tony, describe Matthew’s life in this video: