Being a mother of two keeps me busy - especially when it comes to taking care of my children’s wellbeing. As a family, we experience a range of challenges surrounding our healthcare, with information sharing between different health systems across the UK being one of them.
My son Peter was diagnosed with autism when he was eight, and has a range of additional needs as a result. His needs, combined with our family’s frequent house moves as my husband is serving in the Armed Forces, mean we experience many challenges to get the right care.
Having a child with additional needs can be anxiety provoking, as you never know what the next day will bring. Every time we come to a new place I’m faced with the task of ensuring that information about Peter’s needs are explained to the right people, as there are numerous services involved in his care. It starts with explaining his needs to new GPs, and we often have long waits for treatment approvals or referrals. Recently, a GP was unable to prescribe his sleeping medication, despite presenting my son at the surgery with a repeat prescription, as it was not on the local Clinical Commissioning Group’s approved list. It meant we had to purchase the tablets privately until a consultant was able to prescribe them. These experiences are stressful for Peter, who struggles with the pressure of being moved around and assessed by different services- he hates talking about himself and his problems.
Another challenge for me is that both my children have been treated by the army’s healthcare services. While Defence Primary Health Care has a good service, it uses a completely different computer system to the NHS and they don’t interact, so we can be left with big gaps in our medical records. For my children’s care to be as good as it can be, reliable information sharing is crucial.
I started supporting the work of the Professional Record Standards Body earlier this year, to provide a parent’s perspective for the development of their child health information sharing standard. Supporting the Healthy Child Programme to prevent childhood illness, and improve health and wellbeing, it will help to better involve parents in their children’s care and development.
Using the standard, professionals will be able to record digital data on children’s screening tests, immunisations and other developmental milestones in an electronic Personal Child Health Record, which can be accessed by parents and relevant professionals as and when they need it, helping systems to become more integrated.
As we move around so often, knowing that standardised information is being shared in the right way would make the care my children receive better and safer.