A guest blog from parent carer, Sam Goncalves.

As a parent-carer of someone with complex needs, you are in constant contact with the health and care system. As you move between care support staff, you are often asked to repeat your loved one’s ‘story’, which is an extremely sensitive and difficult topic. This was my reality and is currently still the case for so many other parents and carers.

PRSB’s About Me standard prevents this situation from happening as it records and makes shareable highly individualised information about the person, documenting personal preferences, communication methods and requirements, for view by all carers whenever and wherever they need it. About Me information keeps all relevant parties informed and reduces the need for parents and carers to retell their most upsetting experiences, every time they encounter new care and clinical staff.

About Me was created in 2020 and I’m very proud to have been the Person Lead on the project, representing my son Shane Goncalves, to ensure the standard was fit for action in the real world. For ten years now, my family has been using the Rix Research and Media wiki to record Shane’s About Me information and we have experienced immeasurable benefits from this. For example, Shane lives with cerebral palsy and wears ankle foot orthotics that allow him to walk. If his ankle foot orthotics are put on incorrectly, they rub and cause Shane pain, which in turn means he cannot wear them and cannot walk, removing a key chunk of his daily independence. Using About Me, we recorded a short video with clear instructions of how to properly fit Shane’s orthotics, giving us assurance that his independence will be retained, should any new care staff enter his life.

By using a free text structure with the option for multimedia files, which are particularly helpful at enabling sharing as every system can view video files, the standard was designed to be applicable to everybody’s needs. It gives people the opportunity to share their specific preferences, rather than having to fit them into a limiting definition of what is and isn’t important to them. For new staff, videos and images could mean that they are able to avoid a longer training session with an overworked physiotherapist. The standard is broad enough to include the most individualised types of information, supporting care that is administered around the personal needs of the individual rather than asking the person to construct their care around the system.

About Me allows you to record information that might not seem important to other people but is essential to you or to a loved one

About Me information is not a substitute for clinical information but complementary to it. It gives care providers additional details that you cannot find on a medical record but are still essential for providing care and improving patient outcomes. When Shane was due for his COVID vaccination, his medical record flagged that he should have the vaccine, but Shane’s phobia of needles meant he needed to be supported through this process.

Shane likes to start each day with a sensory communication activity, known as a Tacpac session; information that is recorded in his About Me wiki. We had an idea to try a Tacpac session before his vaccinations, and this calmed Shane’s nerves to the extent that he was able to have both doses and his booster with minimal discomfort. This may have been a much harder process for Shane and his clinicians, had his About Me information not been available for all involved. As this example demonstrates, the About Me standard ensures essential care is given in a way that is tolerable and suited to the person. When we know how to support a person, it has a real benefit to their day-to-day life.

People are experts on themselves, and their values and preferences should be respected. Using input from people with lived experience and professionals, the About Me standard gives people a voice by prioritising this information. For parent carers like myself, the About Me standard is the difference between care staff giving essential care and excellent, personalised-care, that sees the person for the individual they are.