For many years, working with people with complex learning and health needs, I have been guilty of delivering care which I believed to be in their best interests, whilst never considering their individual involvement in the process. I never really thought about what they understood or felt about the treatment, be it medication, physiotherapy, personal care. I never really considered whether it was worth explaining to them the reasons I was doing it.
Now, before you all cry out in horror, this is not about the regular inclusion of individuals in everyday activities. Of course, every episode of care was done with informed consent as far as possible and I have always only provided support to people where they could not manage independently. I’m referring to involvement in their health conditions, where I have been guilty of assuming they would not or could not understand.
It’s easy to assume that when you are providing health support to a non-verbal person, they cannot understand the details of the condition you are treating. You might be dressing a wound, providing chest percussion or administering medication. You know you are doing this in the best interests of the individual and you are working to an agreed plan of treatment or care. But do they not deserve to know why?
Knowledge is Power
Empowering people to understand their health is a big part of helping them be more independent, not to mention improving compliance with treatment. A recent review of accessible information about epilepsy concludes that there is much to be done to ensure we inform and include people with learning disability in understanding and managing this highly prevalent condition. Although there is a growing availability of easy-read literature and some useful apps for this as other conditions, such as diabetes and heart disease, there is still a long way to go to ensure we are really informing people about their health.
It is very tricky to pitch information at a level where it is useful and relevant. With very profoundly learning disabled adults, who do not use language or engage, it might seem that providing information about health is tokenistic.
However, I remember a lady with exactly this level of cognition who I supported a few years ago. She was challenged with severe psoriasis, which caused her to be constantly itchy and as a consequence, bleeding and sore. In prescribing a regime of bathing, ointments and bandages, we knew as her carers that this was going to be tricky to administer. But the charming dermatologist made a point of demonstrating each stage to the lady, with signs and gestures. She helped her to understand what was happening and used voice, touch and movement to impart that this was to help make her happy.
Translating it into practice
Back at the care home, we adopted the same approach, showing her that the process (although long-winded and undignified) had the outcome of making the itching stop. We gave her the ointment to apply herself and used objects of reference to help her request re-application. Of course, this evidences only a limited involvement of that lady in her health, but she did learn that the skin complaint was something that would need to be treated to help her feel better. So much so, that she one day during her treatment regime pointed to my own psoriasis and held out the tube of ointment!
I don’t exclude people from any of the processes of care anymore and I work with the team to make sure we enable people to take as much responsibility and ownership of their health as possible. We need to work harder to improve the advice and information that is out there to enable this.
