Andy McCabe
We all want to live in the place we call home. Most of us don’t question whether we have a right to do so, to decide who we let through our front door, or who we share it with, to arrange our home the way we like, to do our morning routine or to get on with life in the way we choose. Our home lies at the core of who we are.
And so, were someone to simply come along and force us to live somewhere else – somewhere completely different, with little to no control over who we share our living space with, how it is arranged, or over how we live within it – we would naturally resist. To rob us of our home is to rob us of ourselves and the things that matter to us.
Yet this is precisely what happened to Lucinda Ritchie, a young disabled woman, living a full, celebrated life, who, following discharge from hospital, was literally wheeled against her will to be ‘placed’ in a nursing home an hour from where she lived, rather than honour her clearly expressed choice to be supported to return to her own home.
Lucinda’s awful experience serves as a painful and worrying reminder to those of us, like myself, who have reason to draw on care or support to live our lives, that our supposed right to choose to live in the place we call home can be fragile.
As someone who uses an electric wheelchair and draws on care and support to live at home and do the things that matter to me, Lucinda’s story stood out to me, not just because of the situation she finds herself in, but because of how it came to pass and the ability of a public authority to seemingly bypass the law to which it is supposedly subject. It speaks to a serious power imbalance that they are able to do so. Indeed, this is captured in the language used, of “placement”. As if Lucinda was ‘placed’ somewhere, as if she were an object being put on a shelf, not a person with a life, a degree, relationships, and her own front door. The language tells you everything about where the power sits. The people making these decisions have never had their powered wheelchair switched off and pushed into a place they didn’t choose, didn’t consent to, and don’t call home.
Let’s be absolutely clear about what the law says: The Mental Capacity Act says that an adult with mental capacity has the legal right to choose where and how they live their life. No one should be moved to a care home against their wishes, no matter how many other people think it’s a good idea. Yet I suspect many disabled people, myself included, will recognise this feeling: people assuming they know what’s best for us, without ever having lived our lives. We assume the Act will protect us against that, yet NHS Sussex has confirmed that Lucinda has capacity and have offered no legal rationale for their action, which appears to be a flagrant human rights violation.
Of course, this decision has not pivoted on consideration of human rights, or Lucinda’s ‘best interests’ but on money. NHS Continuing Healthcare is meant to be centred on the person, but all too often it is budget-centred. From my own experience, and knowing many others in similar situations, when there is a tension between cost and enabling someone to live a life, cost too often carries the heavier weight. The system is financially incentivised to provide people with support that costs less, but leads to less of a life. Yet we don’t have to imagine what good looks like here. Lucinda was already living it. Home. Relationships. Purpose. A system organised around her life. That’s exactly what social care is supposed to do when it’s working well. Connection, choice and control are not aspirations. They are what every one of us should be living. There seems to be no reason why that couldn’t have continued.
One of the quotes in the coverage highlights that disputes like this are happening “up and down the country all the time”. The oppressive nature of this power imbalance is systemic. There is a disconnect between commissioning and the individual who is just trying to live their life — with power heavily weighted towards those doing the commissioning, not those doing the living. Lucinda has legal support, an informed family, and a public platform. And yet, this is still happening to her. That makes me pause to think about all the people who don’t have any of those things – people who don’t know their rights, people who don’t know that they are actually entitled to support and just aren’t getting it.
From working with a legal rights-based charity, running a Using the Law group to enable and skill up people to know their rights around social care, and having my own social care battles in the past, I know how easily people’s rights get trampled — and I’ve seen the absolutely vital work that charities like Access Social Care do to try to bring some balance to this deeply oppressive imbalance of power. This case highlights the urgent need for legal rights to be better known, better enforced, and better protected and their implementation properly resourced. I hope this awful story gives the Casey Commission something to think about. Accessible and enforceable rights are absolutely central to making sure people who draw on support are able to live lives with opportunity, control, and meaning — things that matter to all of us.
This situation and others like it also highlight why co-production is not optional. Any decisions made in social care, any reforms brought forward, must be done co-productively — not just including disabled people, but centring them as equal partners. Nothing about us without us.
Lucinda said ‘life will not be worth living if I cannot go home.’ That sentence should stop all of us in our tracks. What is the point of social care if what it offers is a life not worth living?
The answer is not to tinker with the same system. It is to reimagine and repurpose social care entirely — to move from keeping people alive to supporting people to have a life.
