– By Jayne Connery FRSA FRSPH, Founder and Director of Care Campaign for the Vulnerable
Over the past decade my work with families has shown me something that is becoming increasingly difficult to ignore – care has become more complex, and families are often expected to navigate that complexity at precisely the point when they are least equipped to do so.
A family may suddenly find themselves dealing with a care home, social services, NHS professionals, Continuing Healthcare, safeguarding processes, hospital discharge teams and multiple assessments, all while trying to understand what is actually happening to the person they love.
For many families, it is not simply a question of knowing their rights. It is knowing what questions to ask, what evidence matters, what records they should be requesting and how to make sure that the person’s actual needs are properly understood.
This is particularly evident in complex care cases.
I have supported families through countless situations where the difficulty was not necessarily that professionals did not care. Often, it was that there were multiple organisations involved, different interpretations of a person’s needs and a significant amount of information being exchanged without anyone necessarily joining all the pieces together.
For a family member sitting at the centre of this, it can be overwhelming.
Evidence matters
One of the areas I see regularly is NHS Continuing Healthcare.
Families can understandably approach an assessment believing that simply describing how difficult a person’s care is will be enough. In reality, the process requires evidence of the person’s needs and how those needs affect their care.
That evidence can be found in many places: care records, medication records, incident reports, nursing notes, hospital correspondence, professional assessments and the day-to-day observations of those providing care.
Sometimes the most important information is not contained in one document. It is the pattern that emerges when the records are considered together.
That is why preparation matters.
It is also why I encourage families not to approach complex meetings simply as an opportunity to tell professionals how difficult things have been. They need to understand the evidence, identify the areas of need and be able to explain clearly what has changed, what support is required and what the consequences are when that support is not provided.
The care home and the family
There is another side to this conversation that is equally important.
Care homes are operating in an increasingly complicated environment. Residents may have multiple health conditions, dementia, mobility issues, communication difficulties, behavioural changes and highly individual care requirements. Staff are also working alongside GPs, community teams, hospitals, social workers and families.
Families, meanwhile, can arrive at a care home carrying months or even years of worry.
When communication breaks down, both sides can become frustrated.
A family may feel that nobody is listening. A care provider may feel that nothing it does is ever enough. What can begin as a relatively straightforward concern can quickly become an adversarial relationship.
Good communication does not mean that everyone agrees. It means that concerns are heard, evidence is considered and there is a clear understanding of what needs to happen next.
That is particularly important when the person receiving care lacks capacity and their family is trying to make sure that their voice and best interests remain central.
Sometimes families need someone independent
There is a point at which some families need more than general information.
They may need someone independent to look at the paperwork, help them understand the issues, prepare them for a meeting, review a Continuing Healthcare assessment or help them organise the evidence surrounding a complex case.
That is different from telling a family what outcome they should seek. It is about helping them understand the situation so that they can participate meaningfully in decisions about the care of the person they love.
It is also about being realistic. Not every disagreement is evidence of poor care and not every CHC application will meet the eligibility criteria. Not every concern will result in a safeguarding finding. Families need honest advice, including when the evidence does not support the position they initially hoped to take.
Independent support should therefore be about evidence, clarity and constructive challenge and not simply telling people what they want to hear.
Why I established Jayne Connery Care Consultancy
My work through Care Campaign for the Vulnerable (CCFTV) has given me a unique insight into the challenges families face across the care sector.
CCFTV remains focused on championing , advocating for safer care, raising national awareness and challenging systemic issues around safety, transparency and the experience of vulnerable people, particularly living with dementia and their families.
However, over time I have increasingly encountered families whose circumstances require detailed, case-specific support.
That is why I have established Jayne Connery Care Consultancy, as a separate private consultancy service.
The consultancy is designed for complex cases where a family wants more structured support. This can include reviewing a case, helping families prepare for meetings, considering Continuing Healthcare evidence and documentation, reviewing Decision Support Tools and providing general advocacy around complex care situations.
It is deliberately separate from my not-for-profit campaigning work.
I believe that distinction is important.
CCFTV’s purpose remains its campaigjing and public-interest work. The consultancy provides a separate service for families who choose to instruct me when their circumstances require a greater level of individual support.
We need better conversations about care
The care sector does not need more confrontation for the sake of confrontation.
It needs better conversations.
Families need to feel that they can raise concerns without immediately becoming labelled as difficult. Care providers need to be able to explain their decisions and have difficult conversations without feeling that every concern is an attack on their service. Professionals need access to accurate information and families need to understand how decisions are being made. And, above all, the person receiving care must remain at the centre.
My experience has taught me that complex care rarely fits neatly into one box. There are often layers of health, social care, family dynamics, funding, capacity, safeguarding and communication involved.
Sometimes what a family needs is simply someone to explain the process.
Sometimes they need help understanding the evidence and they need someone independent to sit alongside them and help them navigate a particularly difficult case.
Recognising that need is not an admission that the system has failed. It is an acknowledgement that modern care is complex – and that families should not be expected to navigate every part of it alone.
Jayne Connery FRSA FRSPH
Founder and Director, Care Campaign for the Vulnerable
