We have heard it everywhere, have we not? Person-centred care. It is the golden thread, the core principle, the box we all tick. And yet, how often is it genuinely person centred, let alone person led? There is a big difference and it is time we were honest about it.
After years of leading services and working alongside brilliant, hardworking teams, I have seen the gap between what we say and what we do. The language sounds right, the paperwork looks polished but the lived experience for many people receiving care still feels very much directed at them rather than by them. So, let’s go further and hand over the reins.
Centred vs led: What is the difference?
Person-centred care is a well-established concept in health and social care. It means tailoring care to someone’s needs, preferences and values. It is respectful, individualised and better than the old one-size-fits-all models. But who is still doing the shaping? Often, it is us.
Person-led care takes it further. It flips the power dynamic. Instead of professionals designing care around the person, the person is actually leading it. They are making the decisions, defining the direction, choosing how and when support happens and we follow their lead.
The University of Stirling’s Dementia Services Development Centre (DSDC) has been vocal about this shift. It describes person-led care as giving people with dementia the right to say ‘I’m in the driving seat; you follow.’ It is a small linguistic difference with massive implications. It reframes the entire relationship between people who use services and those delivering them.
In practice, person-led care looks like genuine control. It is someone deciding they do not want a bath today and being respected for it. It is choosing late breakfasts, saying no to bingo, refusing medication or asking for support in different ways. It is us adapting, not the other way around.
Language: The clue to culture
If you want to know whether a service is genuinely person led, look at the language. The language we use in notes, care plans and handovers reveals everything about who we think is in charge. How many times have you seen phrases like ‘full wash given’, ‘fed lunch’, ‘refused care’ or ‘non-compliant’? These are not just lazy shorthand. They reveal a mindset. A mindset where the care is being done to the person rather than with them.
‘Refused’ implies the person did not co-operate, not that they made a valid, informed choice. ‘Fed’ reduces someone to the status of a baby bird. The language ‘Doubles’ turns a person into a moving object rather than someone who might need the support of two carers to stay safe. And do not get me started on ‘the hoist’ – as if it is an event, rather than a piece of equipment.
Even the first-person style in care plans – ‘I like to get up at 8.00am’ – can feel disingenuous if those words have not come from the person themselves. If they did not say it, why are we pretending they did? During one-to-one sessions with staff, we often review care notes and plans with them. We read the entries aloud and ask, ‘Would you want this written about you?’ Most of the time, the answer is a sheepish ‘no’. That is the turning point.
Let’s start describing what people did rather than what was done to them. Let’s say ‘supported with eating’ instead of ‘fed’, ‘chose not to have a shower’ instead of ‘refused’ and ‘asked to go to their room’ instead of ‘was hoisted into bed’. It is not just semantics; it is dignity.
The legal bit people get wrong
One of the biggest misunderstandings in our sector? The role of next of kin. I have seen nursing home websites proudly stating that they care for ‘dementia sufferers’ (which is grim enough) but I’ve also heard countless staff say, ‘We need to ask the next of kin’. That phrase should set off alarm bells.
Under the Mental Capacity Act 2005 (MCA), next of kin have no legal power unless they have a valid and active Lasting Power of Attorney (LPA) for Health and Welfare. Even then, that power only applies once a person has been assessed as lacking capacity for that specific decision.
It does not grant blanket authority. It does not mean families can override someone’s current wishes or make choices for them just because they have always ‘looked after Mum’. Yet across care homes, hospitals, even local authorities (LAs) and integrated care boards (ICBs), there is still a casual assumption that next of kin equals decision maker. This is dangerous.
If we are serious about person-led care, we need to understand the MCA inside out. We need to assess capacity properly, involve the person as far as possible in every decision and, when they cannot decide, we make decisions for them, not about them, based on what is in their best interests and what they would have chosen.
This is not just a care home issue; it is systemic. From discharge planning to funding panels, decisions are often made without involving the person or without understanding who legally can speak for them. It is not enough to train frontline staff if the culture in commissioning, contracts and local authority departments still leans towards risk-averse, paternalistic decision-making.
Leadership: Culture eats policy for breakfast
Changing documentation is one thing. Changing culture is another. And culture starts at the top. In my leadership role, I have worked with teams who care deeply but have been shaped by years of compliance-focused, task-based systems. Shifting them towards a person-led mindset takes time, patience and, sometimes, humour.
We have run sessions where we read real care notes aloud and imagined how the person would feel hearing them. It is always eye-opening. One staff member read aloud, ‘I was hoisted to the lounge and fed lunch,’ then stopped, looked up and said, ‘Blimey, I sound like a sack of spuds.’ Exactly.
When we give people permission to stop being ‘robots on rounds’, and start being relational, values-driven carers, everything changes. Staff become more engaged. People receiving support feel more relaxed and in control. Families notice the difference.
But this cannot be the responsibility of one team in one home. Commissioners, Care Quality Commission (CQC) inspectors, safeguarding teams; everyone needs to play their part. If we are still commissioning rigid, task-focused, lowest-cost care packages with no flexibility and still measuring quality in terms of ‘visits delivered’ rather than ‘life outcomes achieved’, we are part of the problem. Even well-meant terms of endearment such as ‘love’, ‘darling’ or ‘sweetheart’ can come across as patronising, especially when used routinely rather than respectfully or relationally.
Documentation that matches the care
The Social Care Institute for Excellence highlights that good practice in recording requires us to reflect a person’s voice and choices clearly. There is no point claiming we are person led if the paperwork tells a different story. Inspectors and reviewers can spot tokenism a mile off. A care plan might say, ‘I like to get up at 8.00am and have a shower’ but, if every daily log shows someone being woken at 6.30am and washed before breakfast because that suits the rota, then we have missed the point.
Documentation should reflect the person’s life, not the provider’s schedule. When we shifted to truly person-led documentation in one service we supported, CQC noted that records ‘described individuals’ choices and experiences in a very personalised way’. That was a proud moment, not because we had nailed the paperwork but because it genuinely reflected what was happening on the ground.
System change means everyone gets involved
Let’s not pretend this is solely the care staff’s responsibility. Person-led care can only flourish in an ecosystem that supports it. That means commissioners writing flexible, outcome-based contracts. It means ICBs and LAs supporting innovation rather than punishing risk. It means training that is about values, law and rights, not just tick-box compliance.
It also means rejecting the tired tropes we see in marketing and media. Can we please stop using stock images of wrinkled hands or cups of tea? Not everyone receiving support is old and not everyone wants to be seen as frail and pitiful. Alzheimer’s Society has long emphasised the importance of enabling people with dementia to live well, not simply be managed by services. If your website still refers to ‘EMI’ (Elderly Mentally Infirm, an archaic term still used by some commissioners and providers) units or ‘dementia sufferers’, it is time for an urgent refresh.
Let’s be honest
This is not easy. Handing over the reins means giving up control. It carries risk and uncertainty. But it also brings freedom, dignity and empowerment. Isn’t that what we all want?
We often ask teams a simple question: ‘Whose life is it?’ It cuts through the noise. If we are making decisions, writing care plans or delivering support that prioritises our convenience over their choice, we are not delivering person-led care. We are delivering service-led care with good intentions. As the DSDC at Stirling puts it – person-led care gives people the confidence to say, ‘I will lead and you will follow.’ It is time we let them.
Is your service person led? What could you do to hand more control over to the people you support? Comment on this feature or join the conversation to share your thoughts.
Lucy Corner is Managing Director at Cornerstone Care Solutions. Email: [email protected] LinkedIn: @Cornerstone-Care-Solutions