By Jayne Connery, Founder and Director, Care Campaign for the Vulnerable
We have spent years talking about putting the person at the centre of care, yet I wonder whether we have misunderstood what that actually means. Because when we talk about the person, we often talk about the resident as an individual and the professionals around them as the people responsible for delivering their care. Somewhere between those two sits the family, frequently treated as a visitor, a relative to be kept informed, or, when relationships become difficult, even as a problem to be managed. I believe that is fundamentally wrong. If we genuinely want to create safer, more personalised and more accountable care, then we need to recognise the family not as an optional addition to the care relationship but as one of its most important safeguards.
A family brings something into care that no care plan, electronic record or assessment can ever fully replicate: a lifetime of knowledge about the individual. They know how their mother normally speaks, how their father takes his tea, what makes their husband laugh, when their wife is frightened, what their brother looks like when he is in pain, and when something simply is not right. They know the person before the diagnosis, before the care home, before the dependency. They often recognise change long before it becomes measurable. That knowledge is not sentimental. It is evidence. It is context. It is intelligence about the individual that can be extraordinarily valuable to the professionals responsible for their care.
Yet too often the care system asks families for this knowledge at admission, writes some of it into a care plan and then moves on. We say we want person-centred care, but the person-centredness can become remarkably institutional once the resident enters the system. The routines of the organisation begin to determine the rhythm of the individual’s life. The language of care becomes dominated by tasks, records, medication rounds, staffing, policies and procedures, while the people who have known the resident for decades can find themselves standing outside the process, trying to persuade somebody that the person they know is changing.
This should concern all of us.
Because families can be an early warning system.
They notice the quiet changes. They notice when somebody who normally eats has stopped eating, when a confident person becomes withdrawn, when a resident begins sleeping through the day, when their behaviour changes, when they seem frightened, when their clothes look different, when they are suddenly less mobile or when their personality is simply not quite the same. They may not know what the change means, and they should not be expected to diagnose it, but they can identify that it exists. A good care system should want that information. It should actively seek it.
The question should not be, “Why is this family complaining again?” The question should be, “What are they seeing that we need to understand?”
That is a profound cultural difference.
There is an understandable sensitivity within care around families who challenge decisions. Providers have responsibilities around confidentiality, capacity, consent and professional judgement, and not every request from a relative can or should be acted upon. Families can get things wrong. Professionals can get things wrong too. The answer cannot be to automatically believe one side over the other. The answer is to create a culture in which concerns can be raised without the relationship immediately becoming adversarial.
That is where I believe social care has an opportunity to change the conversation.
We should stop measuring family involvement primarily by whether a family attended a meeting or received an update. We should ask whether the family has been genuinely listened to. Has their knowledge changed the care being delivered? Have their observations been taken seriously? Have they been told when something has gone wrong? Have they been able to challenge without fear that their relationship with the provider will deteriorate? Most importantly, does the resident benefit from the relationship between the family and the care provider?
Because this is not ultimately about families.
It is about the person receiving care.
A resident should not have to choose between a care provider and their family. They should not become the territory over which two sides compete. When the relationship between a family and a provider becomes adversarial, it is the resident who can lose most.
I have seen too many situations where families become investigators because they feel they have no alternative. They begin keeping notes, recording conversations, comparing what they have been told with what they observe, asking for records and trying to understand safeguarding procedures, funding processes and care regulations. They learn a language they never wanted to learn because they are trying to protect someone they love.
That should make the sector uncomfortable.
The family should not have to become a detective in order to have confidence in the care being provided.
And yet there is an uncomfortable truth here for families too. Partnership means partnership. It means respecting professional expertise, understanding boundaries and recognising that good care is complex. It means accepting that a concern should be investigated rather than assuming guilt. It means working with staff rather than assuming that every problem is evidence of poor care. Genuine partnership cannot be built on either side believing that it possesses the whole truth.
The whole truth is usually found somewhere between professional expertise and personal knowledge.
This is why I believe we need to move beyond the language of “family involvement” altogether. Involvement suggests that the care organisation owns the process and permits the family to participate. Partnership is different. Partnership recognises that each party brings something valuable to the table and that the shared purpose is the wellbeing, safety, dignity and quality of life of the resident.
It also means being prepared to hear uncomfortable things.
If a family says something is wrong, the instinct should not be to defend the organisation. It should be to understand the concern. If the family is mistaken, explain why. If the family is right, act. If the answer is unclear, investigate. What matters is that the concern has somewhere to go and that the family can see that it has been taken seriously.
This is where trust is created. Not through polished newsletters, satisfaction surveys or carefully worded statements, but through what happens when something difficult is raised.
I would go further. I believe families should become part of the quality conversation within care homes. Not because they are regulators, inspectors or professionals, but because they experience the service from a completely different perspective. Their observations should form part of the intelligence that tells a provider whether care is working.
We have become increasingly sophisticated about collecting data in social care. We monitor incidents, falls, medication, staffing, complaints, audits and outcomes. We invest in technology designed to identify risk. All of that has value. But there is another source of intelligence that is often sitting in the reception area, visiting at weekends, speaking to their loved one and noticing things that may never appear on a dashboard.
It is the family.
The irony is that we talk constantly about innovation in social care, while one of the most powerful forms of intelligence available to us is human and has existed for generations.
Perhaps the real innovation is not finding another way to keep families outside the system. Perhaps it is finding a better way to bring them in.
That does not mean asking relatives to provide unpaid care. It does not mean transferring responsibility from providers to families. It does not mean compromising privacy or autonomy. It means recognising that safe care is stronger when the people who know the resident best and the people professionally responsible for their care are able to work together.
The care sector has a choice.
We can continue to see families primarily as visitors, customers or potential complainants. Or we can recognise them as partners whose knowledge, challenge and involvement can help make care safer and better.
I believe the second approach is not simply desirable. It is where the future of good care must go.
Because the strongest care environment is not one where nobody asks difficult questions.
It is one where people feel safe enough to ask them.
And perhaps the most important question for every care provider is not, “How satisfied is the family?”
It is this:
“What does this family know about this person that we don’t?”
The answer could change the care being delivered.
And ultimately, that is what family partnership should be about.
