When the Casey Commission on Adult Social Care was announced, we asked our community a simple question: what do you want them to know?
414 people responded. They told us about waiting months for assessments that arrived out of date. About care workers who never stayed long enough to know the person they were caring for. About the moment a diagnosis arrived and the realisation that everything they had saved might not be enough. About repeating the same information to a different professional every single week, because no one system held the whole picture.
They gave their consent for every word to be passed directly to the Commission. We sent it all.
The full submission is called Where Do I Even Start? It is live today and you can read it here.
Email this report to your MP
This submission came from 414 carents across the UK. The experiences behind it are ones Parliament needs to hear.
If any of this reflects your own situation, you can add your voice to it. MPs are more likely to act when a constituent writes to them directly. The tool below takes a few minutes and sends a message to your local MP.
What carents described
The responses came from 414 people caring for relatives in their 80s and 90s, most managing several conditions at once. Many described parents who were, in their own words, in their final months. These are not families who can afford to wait for a system that moves slowly.
Seven themes ran consistently through the data.
77% raised delays and assessments that arrived too late. This was the single most commonly raised concern. For families caring for people at the very end of a long life, delay is not an inconvenience. It can mean the person being cared for deteriorates past the point where the support would have helped.
"Mum doesn't have a dementia diagnosis. She is 94 and has waited over a year for the memory clinic. She may not be here by the time she would be seen. But without a diagnosis it appears that a person needs that label to open doors."
CC-002, East Midlands
70% raised concerns about the care workforce. Not complaints about individual workers, who respondents frequently describe with warmth. Complaints about a system that pays so little it cannot hold onto good people, and that leaves families to cover the gaps when agencies are short-staffed.
"The care agency had several really good carers but were always short-staffed. This meant they would sometimes not come in to do the lunch visit. I had to drive over to cover and was often not told until after the time they were supposed to arrive."
CC-149, West Midlands
69% raised financial concerns. The £23,250 threshold is named repeatedly. For many respondents, the realisation that a parent's diagnosis could consume everything they had saved was the first moment they understood how the system actually works.
"The system is broken. Most carers do a 24/7 week, 52 weeks of the year, for what? A pittance. Getting old in this country will bleed you and your family dry."
CC-003, Greater London
68% described communication failures. What they wanted, consistently and specifically, was one person who knew their family's situation. Not a helpline. Not a directory. One named, reachable, accountable person.
61% described the emotional toll on themselves. What stands out is how rarely they asked for anything for themselves. They asked for fair pay for care workers. For their parents to be treated with dignity. Their own wellbeing appeared almost incidentally, and almost apologetically.
"Please can you realise that unpaid carers do not apply for the job that nobody really wants: a job with no salary, no perks, no holiday, no promotion prospects, and where the only outcome is generally the death of the person you are caring for, or indeed your own."
CC-013, East Midlands
The finding that stopped us
Of the 414 people who responded, 182 (44%) are not registered as carers. Most did not know they could be.
Three reasons came through clearly. Some genuinely did not know carer registration existed. Some do not identify with the word "carer" at all — they are sons and daughters doing what family does, and the label belongs to someone else. Some are still working, unaware that employment does not affect eligibility.
This matters beyond the individual. If nearly half the people actively caring for an ageing relative are invisible to the system, every figure on unpaid carer support, every carer needs assessment, every dataset on who is being reached is built on a significant undercount.
"Nobody asked me if I was one. I did not even know this was something else I had to do."
CC-009, Greater London
One respondent, asked whether they identified as a carer, put it simply:
"I do not think anything would be gained by it in my situation. I do like the term 'Carent'."
CC-032
What carents asked for
The ten asks in the submission are not Carents' policy positions. They are what 414 carents told us they need. The Commission was asked to consider each one.
The asks cover: statutory timescales for assessments; a sector-wide minimum pay floor for care workers; reform of means-testing and a lifetime care cost cap; a named contact for every family; proactive carer wellbeing assessments with funded respite; shared digital records across health and social care; a "tell us once" standard; proactive carer identification by GPs and hospitals; design for long-distance caring; and a single, nationally promoted point of access for families who do not know where to start.
The last one is where the submission gets its title. By the time most carents find Carents.co.uk, they have already spent weeks or months trying to navigate alone. There is no front door. There is no map. There is, as one respondent put it, "no before you get old campaign."
What the submission says about the system
The adult social care system described in these 414 responses is not failing for lack of effort by the people who work within it. It is failing by design: means-tested to the point of injustice, fragmented to the point of incoherence, under-resourced to the point of crisis, and invisible to the millions of unpaid carents who hold it together.
What has replaced a coherent system, largely without acknowledgement, is an enormous informal workforce of adult children. They are managing their parents' appointments, assessments, care packages, prescriptions, social workers, and discharge paperwork, often from a different town, sometimes a different country, while holding down a job, raising their own families, and managing their own ageing.
They did not expect to be here. They did not think of themselves as carers. They are doing it without recognition, without adequate support, and without a system that was designed with them in mind.
The Casey Commission has the opportunity to change that.
Read the full submission: Where Do I Even Start?
Where Do I Even Start? was submitted to the Casey Commission on Adult Social Care in April 2026. It draws on 414 responses from the Carents community, each given with full consent for inclusion. Responses came from across the UK. Full methodology can be found here.
