In this blog from VONNE Members, Difference North East, the Director of Difference, Dr Christopher Hartworth, writes about what good care looks like for disabled people and why they are looking into it.
Care: What It Is and What It Should Be
Care has almost become a taboo subject both within and out of the disabled community. It is something that people are reluctant to talk about or properly engage with and I wonder why this is.
Maybe it has something to do with a subconscious acknowledgement that one day all of the people around us, including ourselves, may be recipients of care at some point in the future, and that is something that we would rather not think about, so it’s pushed away.
Non-disabled humans have an innate aversion to considering anything which suggests diverting away from a symmetrical, four-limbed and preferably good-looking version of themselves, so imagining our nearest and dearest not in perfect health is often too hard to do. So, we choose not to think about it that way.
And there is, of course, the eternal question of who pays for it. Should we be forced to sell our houses to pay for our care? Should we pay higher taxes? And if that is the case, will we only really spend the minimum that is truly needed? This means you get a minimum service.
A Minimum Service
When we do come into contact with this minimal service, whether care is provided in our own homes or somewhere else, we see what it is really like. Care workers are often poorly paid and given limited training. High staff turnover and long-standing vacancies mean that services may rely on temporary workers or recruit staff from overseas to fill the gaps.
When our grandad goes into a care home and we visit, we might witness the standard-issue armchairs, the vague smell of fish and a general environment where we don’t want to linger, let alone live. Or, if we read things in the news about carers abusing those they are supposed to support, it makes us recoil and avoid having a grown-up conversation about what bad and good care is.
If we do grasp the subject, we see that good care can be life enabling and bad care can be world ending. And what happens when care does go wrong? Can we stop it or change it? Who has power and control in the situation?
The Casey Review and Our Research
Currently, Baroness Casey is conducting a review of the care system. Prime Minister Andy Burnham has brought forward the Commission’s reporting date by 12 months, to summer 2027.
This coincides with research by Difference North East, a Disabled People’s Organisation. We want to understand what good care looks like from disabled people’s perspectives, whether it is provided by an agency, through direct payments, or by family and partners. This work must be shaped by people who receive care because they know which questions need to be asked.
How You Can Help
We want to hear from as many disabled people as possible. What does good care look like? Who has control in caring relationships? How do people manage their carers to maximise the good care and minimise the bad?
You may be reading this as someone with your own experience of care, or as part of an organisation connected with disabled people who receive care. Either way, you can help: complete our survey if it is relevant to you, or share it with disabled people in your networks.
Our dedicated webpage contains the questionnaire in standard and Easy Read formats. Please help people find the version that works for them and support them in taking part if they ask for help.
Help us show what care in the North East looks like now, and shape what it could become.
Find out more about the research and complete the survey here.
Find out more about Difference here.
Thanks for reading