How personalised care can change the future of care for people with learning disabilities

Personalised care and support has made a world of difference to my 47-year-old son, Michael, who has Down syndrome and another learning disability. Over the years he’s suffered with some very complex health problems, including a thyroid condition, sleep apnoea, ulcerative colitis and a rare liver condition. He’s always struggled with his weight, which has had an impact on his wellbeing and health conditions.

Many years ago his GP told him quite bluntly that he would be dead in 10 years if he didn’t lose weight. But he offered no plan to help Michael to get fit and healthy and at the time Michael did not understand the impact his lifestyle had on his health. Without support, he would make the wrong food choices time and time again. It wasn’t until he developed significant health problems that his support staff began to take the issue seriously and as his Mum I had to be very assertive to make sure he got the help he needed.

Ever since I began managing his care and support plan, we’ve seen gradual improvements in his conditions. He works with a range professionals and support staff to make the right healthy choices. This includes supporting him to shop, and plan and cook healthy meals and snacking on fruit not chocolate! He no longer lives a sedentary lifestyle and has become involved in local community activities such as dance classes, which are helping him to get fit. By becoming actively involved in his own care and making his goals more manageable we’ve seen a complete change in his health. When he had half his liver removed four years ago, we were really worried about his rapid deterioration. But the holistic approach to his care and support works for Michael and he’s busy and active seven days a week and his health significantly improved!
While his personalised care and support plan is working wonders, it falls to me to be able to manage his care and coordinate the different services involved. As his mum I’m responsible for coordinating his care plan, and without me there to write down all the aspects of his care and communicate them to the relevant people, his health could be compromised.

I worry that I won’t be around forever, and I want to know that the right systems are in place for Michael’s care plans to continue without interruption. Hand written care plans aren’t enough anymore, we need digital care and support plans that can be accessed by everyone involved in care. Developed by the PRSB, new standards for digital care plans mean that in the future professionals will always be able to share care plans digitally between different people involved in a person’s care. It means that people like Michael can become actively involved in their holistic care plan with the support of relevant professionals, all of whom are able to update the plan and make changes. I know I’d feel more comfortable with my son’s care if all his information was available to professionals quickly and easily, and it was clear who would be accountable for each aspect of his care.

For people with learning disabilities and long-term health conditions, it’s really important that we personalise care as much as possible. Technology can help to support this, but we also need different professionals to understand the importance of sharing the right information about the people they care for.