BY SARAH ROSE, Chair of Trustees of Pathfinders Neuromuscular Alliance

When I read about Lucinda Ritchie, a 33-year-old disabled woman moved to a nursing home against her will, I felt something deeper than concern. I felt recognition. I could easily have been in her position.

Like Lucinda, I live with complex health and care needs. Like her, I receive NHS Continuing Healthcare. Like her, I live independently in my own home with a dedicated care team. And like her, the sustainability of that life ultimately depends on decisions made by my local Integrated Care Board. That reality is never abstract.

Who Lucinda Is — And Why This Matters
Lucinda is not simply a “high-needs patient.” She is an accomplished disabled woman: a master’s student at the University of Southampton, a disability advocate, and a recognised pioneer in eye-gaze communication technology.

Before her hospital admission with pneumonia last year, she lived in her own adapted bungalow with 24-hour one-to-one nursing funded through Continuing Healthcare. She has full mental capacity. And yet, after a prolonged hospital stay, she was moved to a nursing home an hour from her family, despite refusing that placement. Within two days, her condition deteriorated and she was readmitted to hospital.

NHS Sussex has stated the decision was based on clinical safety, not funding considerations. But for many of us who rely on complex care packages at home, this story lands heavily.

Independent Living Is Not a Luxury
I think it’s important to explain what living independently with high-level support actually means.

For me, it looks like:
A team of 9 PAs, some full-time, some part-time some bank staff all trained by each other and me plus the mandatory training in more general aspects. I use a non-invasive ventilator at all times and have to be hoisted in order to transfer. My positioning requirements are so crucial and specific to me
and if certain aspects of my daily routine are missed there are consequences that cannot be quickly undone. I have a 24hr care package which enables me to employ PAs who help keep me well, safe and sane.

It also means:
They provide the foundations that mean I can work, travel, have fun and enjoy time with my loved ones. My home is not simply a preference. It is the place where my care works. It is where risk is understood, routines are embedded, and trust has been built over years. Independent living is not about comfort or convenience. It is about safety, stability, and autonomy.

Capacity Must Mean Something
One of the most difficult aspects of Lucinda’s case is that she is recognised as having full mental capacity. Under English law, adults with capacity have the right to make decisions about where they live — even if others consider those decisions unwise.

Continuing Healthcare is supposed to be person-centred. Decisions must be based on clinical need, not cost. Social and emotional wellbeing must be considered alongside physical care. If someone with capacity says, “I do not consent to this placement,” that should carry weight. If capacity does not protect your right to choose where you live, what does it protect?

The Unspoken Anxiety in the CHC Community
Those of us who rely on high-cost, care packages understand something most people never have to think about. Our care is expensive. Typical 24/7 care packages for people with complex needs can cost significantly more than a nursing/care home placement. Although I would argue that such comparisons are unhelpful because they are not providing equivalent costings for the same thing – 1:1 or 2:1 24hr complex care in an environment that is equipped and tailored to an individual’s needs.

ICBs across the country are under enormous financial pressure. Demand is rising. Budgets are tight. Discharge pathways are strained. None of this makes clinicians villains. Many professionals work extraordinarily hard to support us
well. But it does create a structural tension. When you are visible on a spreadsheet as a five-figure monthly cost, it is difficult not to feel vulnerable.

I was once given weeks of worry that my care budget was being considered against the cost of a local residential home and discussed by a panel of people I could not address myself. Instead, I had to write pages of justification and ask others to help me demonstrate why a self-directed care package was the best option. Letters were provided by my respiratory consultant, independent living adviser and my manager where I worked.

For many of us, a long hospital stay feels particularly precarious. We know the fear that long-standing home packages are reconsidered. This reality is rarely spoken about publicly. I would also add that there is a strong case for regular caregivers to provide continuity of care in hospital environments but that is a subject for a separate blog.

This Is Not Anti-NHS
I want to be clear: I am deeply thankful for the NHS. I value the professionals who support me. I work constructively with my ICB and recognise the complexity of the decisions they face. This is not about attacking individuals or institutions. It is about asking how we protect autonomy within a strained system. Because systems under pressure can make decisions that feel rational on paper — but devastating in lived experience.

When There Are “No Good Options”
Often, situations like this are framed as if there are no good choices — only competing risks. Hospital is not appropriate long-term. Home care is expensive. Residential care is presented as the practical middle ground.
But framing matters.

When discussions are reduced to budget lines and discharge pressures, the person at the centre of the decision can begin to disappear. It can feel as though the choice becomes: unsafe at home or safe in a care home. Yet that binary is rarely accurate.

There is a widespread assumption that a nursing or residential home automatically offers greater safety because it is a regulated environment with trained staff. And for many people, care homes provide excellent, compassionate support. But complex and multi-system conditions like mine are not generic. Safety is not just about staffing ratios or regulatory compliance. It is about:

• Deep familiarity with an individual’s ventilation needs
• Understanding highly specific positioning requirements
• Recognising subtle signs of deterioration
• Having established routines that prevent avoidable complications
  

In my own case, my team’s detailed knowledge of my body and baseline is what keeps me well. That knowledge cannot be transferred overnight. So when care home placement is presented as the “safer” option, it is worth asking: safer in what sense? And according to whom? Sometimes what looks safer institutionally may feel far less safe experientially. And when someone with full capacity is saying clearly, “This is not safe for me,” that voice should not be lightly set aside.

Institutional Care Is Not a Neutral Alternative
For people with complex or multi-system conditions, institutional placement is not just a change of address. It can mean:

• Loss of routine
• Loss of personalised clinical knowledge
• Reduced flexibility
• Distance from family and community
• Reduced participation in education or work
• Loss of agency

Independent living is not a perk. It is the difference between being supported to live a life — and being managed. The thought of this being “chosen” for me is almost too difficult to contemplate. I would not be me anymore.

Why I Am Writing This
Rather than issue a corporate response, I am choosing to write personally — because for many of us, this is not theoretical. It is a question that sits quietly in the background of our lives. Will capacity be respected? Will person-centred care remain truly person-centred when budgets tighten? Will home continue to mean home?

Home Must Mean Something
I do not know all the clinical details of Lucinda’s case. I respect that there are complexities behind every decision. But what I do know is that Autonomy must matter and so should capacity. It feels like independent living could easily become negotiable when care is expensive. And I would not want to see what so many have worked to achieve, people such as the late John Evans (widely known as a pioneer of the Independent Living movement), reversed. I am fortunate to live independently, supported by a skilled care team, in my own home and I never take that for granted. Stories like this remind me why.

https://www.bbc.co.uk/news/articles/czj1ndzz9xyo?fbclid=IwY2xjawQMASxleHRuA2FlbQIxMABicml
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