Results of our Casey Commission ‘first phase’ poll – public consultation (and underlying explanation of the issues)

This is our results page here, as of 10 February 2025.


This was the link to our poll, where the public, the sector, in fact everyone who is interested in adult social services and care, was asked to nominate the most important issues, for them, out of 20 issues related to the way it’s working at the moment.

1. Delay regarding essential Care Act processes, such as assessment and care planning, given the Ombudsman thinks that 6 weeks is enough for finishing a typical assessment and the duty to meet needs is triggered by the eligibility finding.

All over the country, councils are running waiting lists for assessment of needs, which is a process that is a precondition to receiving care services or funding from the council. They are doing so because

1. They haven’t got enough competent staff to get through the backlog and increasing numbers of requests (it doesn’t need to be done by a social worker, please note)
2. It can’t be done online without corroboration or probing, because a person left to their own devices might under-describe their difficulties, or over-describe them, without someone to guide them as to the legitimate and reasonable reach of adult social services functions under the Care Act. And the process is professionally led – albeit focused on the subjective relationship of the person with their condition – because the council IS the decision-maker, in the end.
3. Stretching out assessment keeps the duty to meet needs at one further remove, because the duty arises at the point of an eligibility decision, which can only happen after an assessment. Putting that decision off, thus maximises the council’s ability to remain solvent, and saves money on services, whilst other people step up informally or continue to step up, not knowing what to do about it.

The Ombudsman is there as a backstop to the majority of complaints made to councils, after they have been rejected; and thus the Ombudsman is in a position to give an opinion as to what is a reasonable time in which to discharge the duty to assess, once it is triggered by evidence of an appearance of needs for anything in the nature of care or support.

The Ombudsman calls the raising of false barriers and circles of process before a council makes a decision, ‘gatekeeping’ and does not approve of it. The Ombudsman recommends that 6 weeks is a long enough time in most situations to start and finish an assessment.

In the real world, it is common for people to wait 6 months, before an assessment is even begun, if they are not merely signposted to community based assets and strengths in the first place, to encourage them to help themselves before presenting with an appearance of needs for care and support.

2. The quality / independence / knowledge base of independent advocates commissioned by the local authority for supporting the person’s participation in Care Act processes 

The duty to provide independent advocates to support people’s participation in the processes that must be got through before they can qualify for services under the Care Act, is an absolute duty – not a discretion. This means that it is not subject to available funding, as such: councils must secure sufficient to make the relevant appointments when triggered.

But the quality or independence of advocates, bearing in mind that there is no mandatory legal framework feature in their qualifications or training before they can practice as advocates, is considered to be an issue.

Advocates tend to work for organisations which are commissioned by councils – councils don’t vet or supervise or choose individual advocates directly, and that is good for their independence, of course.

But commissioners do control how much money they are prepared to pay voluntary organisations for the privilege of being given a geographical area or several ‘Lots’ of different types of advocacy contract, in tenders, and that can make advocacy organisations weak in the face of the need to stay in business, as well as impoverished when it comes to ensuring that their advocates are properly trained to do the job. 

Individual advocates can feel that they are not in favour, if they come over to the local authority’s staff as too ‘pushy’ or too knowledgeable or too much ‘like an advocate’, despite the fact that the role of an advocate under the Regulations requires them to inform people about their rights and raise concerns in a report to the council if they think it’s necessary.

As advocacy is a legal right, if the qualifying conditions are triggered, for assessments, care planning and budget setting, revisions to care plans and to safeguarding investigations, it’s a very important aspect of procedural protection for people with less than full cognitive strength, regarding the twists and turns of the processes in place locally. 

3. The approach to informal unpaid care from family, and what is implied or said to be ‘expected’ of people related to or accommodating people with disabilities or chronic illness

Given the stretching out of assessments, and councils’ increasingly eye-brow raising stances on what will or must be enough to meet a person’s given needs, people’s families, relatives, neighbours and friends are being leaned on to do more and more, when they in fact have no legal obligation to do anything for their loved ones, even if sharing a house with them, and even if provided with free accommodation, on the basis that they provide the care.

This is because the legal system recognises that it’s a very bad idea to force people who live together to look after each other, when there may be a lifetime of history, good or bad, and resentment or conflicts of interest, as between individuals, different generations and different branches of a family.

In addition, decades of political ideology have encouraged people to get on their bikes to go find work, such that it’s not the norm to find different generations of one family all living in the same county, or village, any longer. 

The State provides a safety net for reasons of economic necessity, therefore, and this is reflected in the Care Act. Anyone’s eligible needs will (should) have been identified without account being taken of what they could potentially rely on by way of input from friends or family, BUT that input, if it is both willing and able, is lawfully able to be factored back IN again, at the care planning stage, where the council has to decide what it is necessary for IT to do, to cover off any gaps between the person’s informal sources of help, input from the community, and resources it is reasonable to expect them to access, and the full extent of their needs.

There are approximately 5 million unpaid carers in England and Wales. The value of unpaid care has been estimated as almost equivalent to a second NHS. However, 44 per cent of working-age adults who are caring for 35 hours or more a week live in poverty, and a Carers UK survey found 40 per cent of carers providing high levels of care had given up work for their caring role. Ninety-one per cent of unpaid family carers feel ignored by the government, and 86 per cent agree that successive governments have ignored the needs of unpaid carers for a long time (see the Fabian Society 2024 report: Caring for Carers for sources.)

Carers can get Carer’s Allowance for putting in 35 hours of unpaid help a week, but have to stay under an earnings threshold, the rest of the week. That benefit income is not a salary, in and of itself, but claiming it has got a lot of people into trouble as was covered in press reports last year, because whether one is over the threshold at any given time is difficult to stay on top of.

Providing care on the basis of Carer’s Allowance only is not an employed or self-employed role, so there are no rights, no time off, no holidays, no sick pay, no nothing, for being a carer, unless one’s loved one goes to the council, qualifies for funded care, and is given permission to spend their funding through a direct payment, ON one’s own relative, living in the same household.

That permission is not easily given, although it would be a solution to the problem that is reported on every week, of people going without care, just because the market is failing and their budgets are not sufficient to attract a worker.

Lots of councils collude with the assumption that a moral duty to care for one’s family members, derives from some sort of a legal duty – even from the fact of having got married, for ‘better or for worse’, for instance, and they let people carry on in blissful ignorance that caring is a choice, and that if one has had enough, one can tell the council, who must then re-assess and make a rational decision as to what aspects of whatever one was doing were directed towards meeting needs that meet the council’s interpretation of the national eligibility criteria – and then think up ways for filling that gap.

People may be in crisis when the need for care and support hits and not in a position suddenly to become good at community care law. We do not find that unpaid carers think it is rational to think of caring as a ‘choice’; they find the notion, offensive, in fact. The impact of a crisis in the social services system operates very severely upon carers.

The majority of carers are women, according to all recent surveys. Women are the ones in a family who are likely to be being paid less overall, than the men, and so if a relative needs to be cared for, it is the woman who tends, rationally, to be the one to give up work, to do that. That is an equality issue, in terms of the public policy that we should educate boys and girls equally to look forward to an outward-facing career, in which they can rely on society having an infrastructure that actually works for everyone.

In the 2024 Fabian Society’s paper ‘Caring for Carers’, policy options for carer’s employment and financial protections were reviewed – the highest priorities being measures that will help people simultaneously care and work. These include options that would cost the government next to nothing, although they would require changes from employers. Caring for Carers also floats a ‘right to return’ to a job, for carers who need to step back from work temporarily. In due course this could evolve into a paid leave scheme or insurance benefit similar to statutory maternity pay or maternity allowance.

4. Insufficiency of personal budgets and direct payments in general in light of the going market rate for services / cultural obstruction to / inflexibility regarding personalising the spending of one’s allocated budget

All over the country, providers of care (whether voluntary or for profit) are saying that they are not paid enough to make it worth their while to provide their services to the councils and ICBs who commission them to discharge their own statutory duties to meet need. People taking direct payments are saying that the rate they have been provided with, to spend on meeting their own needs, is not enough to attract anyone half way suitable to do the job.

The law under the Care Act says that councils can take account of their finances (which will never be enough, because it all comes from public money granted to them by central government and thus with the consent and approval of anyone who votes, and particularly those who pay tax) in deciding how to meet a person’s eligible unmet needs.

The law does not permit the council sector to say it CANNOT meet the needs just because it is hard up, and underfunded; but the sector can become progressively meaner, in terms of how GOOD or DESIRABLE the size of a person’s budget, or the content of their care package of services, might become through successive cuts, over time.  

This is lawful but remains hidden in part because there is no appeal system; only a challenge by way of public law proceedings in the High Court, for judicial review. Judicial Review is an intervention by the judiciary of a supervisory nature, not an appeal. It is the only form of remedy which can force a local council to go back to square one and make the decision ‘properly’ in line with public law principles and previously decided cases.

The judges can wipe out a decision about a care plan or a budget and force a local authority to follow the legally required thought process, but only if the judge spots something in the way in which the council had arrived at that decision, justifying intervention.

The threshold for intervention is high. The care plan would have to be unlawful, or unreasonable in the sense that no reasonable authority would or could conceivably offer up a professionally competent social worker to agree it would meet the need; or it must have been unfairly arrived at, or be non-compliant with a person’s human rights.

Without any appeal, and with legal aid funding in short supply, (so far as finding a lawyer actually interested in working at a loss is concerned, on work that is often traumatising and difficult to get a handle on), there is only the complaint system or the ombudsman, and the ombudsman does not use social workers or lawyers for a ‘sense check’ in adult social care complaints, when investigating the facts and the practice.

The law says that a lawful care plan/budget will take account of all relevant considerations, and that must include the duty to promote the person’s wellbeing, the duty to follow the statute when purporting to meet needs, be person-centred, and abide by the rules of procedural fairness, the broader legal framework regarding the Equality Act, the Mental Capacity Act and the Human Rights Act.

The law says that a lawful budget will be the cost to the authority of meeting the needs, and that that will not always be the cheapest cost available from any old provider, but the best value means of meeting the needs, taking account of the client’s outcomes as well as those under the eligibility criteria regulations, AND the local going quality market rate for a service that a competent professional agrees will meet the needs of the individual, to a defensibly appropriate and adequate standard.  

The Council is not merely able to point to how low it has persuaded certain contractors to go, with regard to getting themselves market share via the council’s public procurement efforts, through tendering. It does not control the whole market, and what it commissions for its own social care clients will not necessarily be ideal or excellent but will tend more to being standardised. If people want choice, in relation to paying for care at home, they can take a direct payment, but it must be sufficient to enable the person to become an employer or otherwise find an agency which suits their purposes – not their every whim, but their reasonable expectation of flexibility, given that taking a direct payment means that they are saving the council the bother of commissioning services for them. Councils shape the private market in this regard too, by keeping direct payments low, and saying to themselves that if people seem happy to take the sum offered, well then, it must be good enough to do the job.

5. The absence of formal Care Act care plans, more often than not, despite it being a duty – or failure to share a detailed record of how the person’s personal budget is supposed to meet the eligible needs with the person or their best interests consultees

The Care Act brought in an absolute duty on councils to work through a formal care planning process after an eligibility decision, after an assessment of needs – so as to record its thinking about what would feasibly meet the needs, and which of two or more alternative adequate means of meeting a need would be best value, if there was more than one.

That duty has been regarded by the Courts as a duty to write up the plan in a transparent coherent way, so that all the needs which are eligible can be seen to be covered off by something. The care plan has always, even before the Care Act, been seen as the bedrock of accountability and governance of the thinking, and as the foundation of the means to challenge the budget or the package. For that reason it is clear to legally well informed people that the same is true for s117 Mental Health Act care plans, and care plans for those entitled to NHS Continuing Health Care. But that does not mean the staff working on those functions know this truth, or are managed by others who do.

That ‘something’ that is the response to need, might be funding for services (the funding to be able to be seen to be sufficient in terms of the rate per hour, and the number of hours needed, and at a given skill level or in a given type of setting or using a given type of model); or it might be informal unpaid willing and able care from a friend, family member, voluntary organisation utilising volunteers; by ways and means arising organically from the community network the person is lucky enough to have, or be steered towards, or through their own voluntary spending of money on meeting some of their own needs, or perhaps even funded by another agency with a higher or primary statutory duty, such as the Housing Authority or the local NHS Integrated Care Board.

The plan must contain what the Care Act says it must contain (which includes the budget). It must be arrived at after involvement of the person in need, and the people in that person’s life who are given a legal right to be involved. It must be written up after all reasonable steps have been taken to reach agreement as to its contents. Copies must be provided to the individual to whom it relates and to others where the person asks for that to happen, or otherwise in the person’s best interests.

A care plan is the central most important record of the legitimacy of the thinking and approach of the council’s professional staff, or the management team which has signed off the staff member’s recommendation in the specific situation. Even if a specialist care provider has been persuaded to draft the kind of care plan that it and its staff see as appropriate, it is not a Council/Care Act care plan unless or until adopted by the Council itself. The Council IS the care planner, even though it must be person-centred and allow for the person’s subjective relationship with their own condition to influence the council officer’s evaluation of what is needed to meet the need, under the statute.

Even a person who is taking a direct payment and who will thus be more in charge of their own care planning, on a day to day basis, is entitled to a Council generated Care Act care plan, setting out how the direct payment is expected to meet the needs, across particular domains in which the person has been found eligible, by reason of their difficulties and the impact sustained from them. Thus they can check out the sufficiency of the sum in question, before the file is closed on their case, for another year, or until the next review.

The Ombudsman’s complaints output makes it clear that a lack of care plans is commonly found, countrywide, although people are usually told how much their budgets are. This means that they can’t see at a glance whether a family member is being assumed or expected to do something towards the care package, after an assessment and care planning conversation has been held – possibly remotely online, or possibly over a number of different discussions. This is particularly problematic after a review of how one’s current care plan is supposedly working, before a revision (often a cut) is announced to that first care plan, as the years go by. It means that there’s no clear ‘prescription’ of what was supposed to be happening, and thus no clear benchmark by which to measure the appropriateness, legality, articulated reasons for or fairness of whatever is now being offered.

6. The absence of an appeal mechanism / lack of means to challenge a decision regarding one’s needs / difficulties with the social care and health service’s complaints process / weakness of the powers of the ombudsman

As mentioned at 4) above, there is no appeal against a council’s decision as to whether or not one’s situation has triggered an assessment, whether one has needs for care and support, whether or not they are eligible needs, and whether or not the authority will meet them anyway, under its power, as opposed to its duty, and what is regarded as sufficient to meet those needs, after all sorts of other resources are sucked in.

There are only remedies which are so weak that the Equalities Commission has conducted an enquiry as to the consequences of the effective absence of remedies in the context of adult social care. We have ourselves noticed that the Ombudsman’s investigators do not seem to probe how it comes about in a council with legal responsibilities in the nature of duties to vulnerable poeple, that the staff have not learned, or have forgotten how – the Care Act works.

The other options are the Monitoring Officer, (an official in every council required to refer likely contraventions of enactment (breaches of statutory duty) or rules of law, to the whole council unless s/he can knock heads together to resolve the issue internally; secondly, the complaints system for social services – a system which is lawfully able to be run differently in every single council and NHS Integrated Care Board, as long as it achieves certain milestones – and a system that does not seem to meet with public satisfaction, according to the Equalities Commission in terms of how it operates, currently – and the Ombudsman, an investigatory body which upholds nearly 80% of the complaints it receives when a previous rejection by a council enrages a member of the public so much that they grit their teeth for yet another year of to-ing and fro-ing about the facts.

The Ombudsman makes recommendations for the resolution of injustices caused by fault, on the part of council staff, and in respect of privately sourced care providers, but does not have a role in holding the council sector to any wider account for failing to discharge Care Act functions in accordance with decided case law.  The CQC has begun to quality assure councils, and not just providers, but we have noticed that it’s possible to get a Good rating from CQC, even if 100% of complaints made against one’s adult social care department have been upheld, and we would be interested to hear whether that score is a factor to which CQC gives any weight.

If a council wishes to ignore the Ombudsman’s recommendation, all it can be required to do is to publicise that fact in its local newspaper.  The reports do not operate under a system of precedent, and are hard to research online on the Ombudsman’s site but since the only other remedy (two stage judicial review proceedings, in the Administrative Court), carries with it a risk of having to pay the council’s costs, if one loses (unless one has qualified for legal aid, which one needs to be extremely impoverished to pull off, let alone able to find a legal aid lawyer willing to take the case), the previous free-flowing judicial supply of carefully thought-through principles for community care law, is withering away and dying out.

People prefer to take their issues to the Court of Protection these days and find it very much easier to find a lawyer willing to take their case, because non-means tested legal aid is available to anyone who can frame their challenge to the council as a matter of deprivation of liberty after a DoLS authorisation has been granted.

We have thus come to the position that people who lack capacity, and who have been placed in care homes under the DoL Safeguarding, have GOT a funded form of appeal available to them in the Court of Protection, whereas people who are capacitated and having care at home, have no obvious legal remedy to use, if they think that their care plan or budget is unlawful. That must be a form of discrimination, we think, for which the State should take responsibility and sort out.

7. The fact that care is charged for, or the working of the charging system, including the way disability related expenditure is treated by councils, and the fact that one’s house is counted into one’s means for any residential care placement

The question of charging reform has been mooted over the last 15 years and already been put in place on the statute book, but governments have consistently failed to take the financial truths of changing the system, to the public, at the right time, via public debate, well before a General election.

This has meant that appallingly short-termist and partisan behaviour has occurred, during the cut and thrust of pre-election campaigning on all sides, for the purpose of political point-scoring.

People are not unreasonably surmising that the timing of the Casey Commission for 2028, just before the next election will have to be held, is a purposeful strategic protective measure being built in against blame for the government for not being able to hold on to any cross-party consensus that might be achieved, as to how to FUND change, however hard Baroness Casey might work towards securing such consensus, in the run-up to the next election.

But the question of funding reform is not just about the uninsurable risk of having to pay out hundreds of thousands of one’s own money for the happenstance of whether one gets dementia, as opposed to pancreatic cancer or arthritis, in which case the NHS might pay for one’s care, if one qualifies for NHS Continuing Health Care.

It’s about the morality of charging people, with disabilities with which they may have been BORN (and not just acquired through risk-taking, braveness, bad luck, bad habits, self-harm or natural ageing and illness) – given that they will have had less of a chance to build up personal wealth, and particularly housing wealth, before needing care and support as an adult.  

For people whose ‘hand of cards’ means that they are facing a life on benefits, through inability to make a sufficient income, to keep up with the current cost of living, taking even their specific disability related benefits away again, to pay for care, is an offensive and morally wrong stance, hard-wired into the system.  When their benefits go up, their charges go up; they feel no benefit from the increase, unless the minimum income guarantee that is allowed to be set by government under the Care Act, and stuck to by local authorities, goes up too – which is rarely. 

It is no doubt doubly offensive if they are paying for inadequate packages of care in the first place, and are too afraid or exhausted to ask for an upwards revision.

The means test is considered demeaning and invasive, by many recipients of care services. Having to prove by way of receipts every bit of spending one has made on solving the problem of the failing care market, is hugely sapping to a person’s energy, and not part of a gloriously ordinary life, it is often said. Disability Related expenditure ‘standard’ levels are risibly low, some at £10 a week, as standard.

A council is allowed to offer a person a care plan and funding in relation to their eligible needs and then invite the person to consider whether they’d like to meet some of those needs themselves, ie by self-funding that chunk, for the benefit of more choice and control.  If they do so, then that bit of expenditure is then treated as Disability Related Expenditure and disregarded for the means assessment for charging purposes, because they are meeting their own needs with that money.

But DRE must be disregarded too, even if it’s not money being spent on meeting needs which have been covered off in the care plan – the Care Act guidance and case law are both clear about that, and council staff with no social work training or values are given the role of making the financial means decisions as to what counts as ‘needed’ or ‘required’ to be spent from the person’s own funds – and which is related to the person’s disability, as opposed to just a personal ‘choice’… It is no wonder it causes disproportionate aggravation.

The law grasps that there’s a difference between care planning for the contents of a lawful care package, where what is being funded will not necessarily be ideal or ‘5-star’ but which will be still just about adequate and defensible – and the consideration of what is a reasonable sort of thing, outside of that care plan, and to what extent, for a person to spend their own money on, given their disability.  This is one of the most stressful and invasive parts of receiving services under the Care Act, unfortunately, and the Ombudsman is always reporting on fault in the context of charging and DRE decisions.

We are apparently the only country in Europe which is obsessed with passing on wealth by way of Wills to our offspring, who will have benefitted from free education, free health care, and subsidised child care for most of their lives, whilst working people paid taxes, to support their forebears as they age, and their fellow citizens.  The Boomer generation has had the windfall of property ownership-based wealth, multiplying hugely over 2-3 decades, whilst their own children throw inter-generational unfairness at them, on a bad day, and this is not helped by the impact of the Covid era on the younger generation’s own careers and fortunes.

Most people, when asked to think about it carefully, say that they accept that we need a partnership between the State and the populace, regarding care costs; most people accept that if you’ve got the money, you should pay for your own care, or pay more for it, proportionately, compared to those who have nothing – whilst everyone accepts that the NHS is bound to be blind to one’s means. People care about holding on to their houses, however, more than anything else.

The national obsession of middle England (and the impact of the Budget on people’s pension pots, most likely!) seems to make people with any sense of above-average wealth more eager than they might be in other countries, to avoid paying for care, by giving their money away to loved ones, rather than ‘waste’ it on paying the State (or anyone else) for care and support; but this activity can land one in hot water, if the council takes the view that you must have known you were going to be needing paid-for care, at the time you made the gift. And it can rebound very uncomfortably on one’s relatives, too, especially if they were trusted to do exactly what we’re talking about, through a lasting power of attorney, by their parents! 

There are in fact deferred payment schemes available from all councils in this country which mean that nobody with a reasonable amount of equity in their house, even if they are assessed on the market value of their house (ie for a care home placement, rather than care at home) needs to sell their house before they die, just to ensure that they get the care. A charge is placed on their house, which the estate pays, but the house can be put to good use during the person’s life, for an income or otherwise; and one can take advice about this sort of instrument, with only a little effort and expense. People who have put a power of attorney in place are not excluded from this access to cheap loan finance, even if they lose capacity.

This was ignored by politicians, when it was brought in, even though it was in fact a very cheap form of equity release which the previous government had planned to fund, so that people and their families did not lose their bond with their house before the end of their lives. 

As charging reform was first designed, and legislated for, it was called a death tax by opponents, because the charge would take effect on death. Later on, when another set of politicians came up with the idea of increasing inheritance tax, or cutting the threshold at which it becomes due, that was called a ‘dementia tax’ by opponents.

When the charging system design was put in place so as to ensure that people only metered towards the cap by reference to their social care charges, and not the full cost of the package to the State, this was decried as unfair, because the poorer in society would take years longer than the wealthy, ever to reach the cap.

When the Health and Social Care Levy was mooted – an extra few pence on national insurance, we perhaps got closest to agreement as to how to fund the cost of care, both for the current crisis of funding in councils, and for the 2030s and 2040s when an explosion in the number of people aged over 80 will invariably mean that the cost of social care to the public purse, goes UP.  But that was blown out of the water by electioneering and instability in both the main parties.

The current charging system is in fact relatively nuanced and redistributive. It does not penalise people for needing two people to care for them, with a doubling of the cost, if they are already paying the maximum they are allowed to be charged, under the means test regulations.

People are free to contend that even if the sums have been done correctly, the overall charge is not affordable as long as they share their day to day expenditure details with an officer, to see what it is that they are having to spend their money on, such as debts. It allows for a discretion to be exercised in most situations as long as the council has the courage to do so, knowing that this does not mean one is setting up a precedent for a concession that then must be afforded to everyone else.

An unlawful charging policy can be challenged by way of judicial review and this has in fact been done in the last 5 years, which has led most councils to grasp that they must be much more careful about setting their approach given disabilities and human rights of those affected.

On the other hand, Birmingham has successfully defended litigation for increasing its citizens’ contributions on the footing that charging income IS one of the only ways a council can make up shortfalls in funding, after council tax, business rates and central government funding has been totted up.

Attempts to seduce the money markets into offering insurance for the charges UP TO the lifetime cap may well be resurrected, and the system in Scandinavia is being put forward as one worthy of study.  

Most people accept that we cannot, as a civilised and affluent society, just carry on as we are. It’s very bad for the economy, that such a large number of people are saving for a ‘just in case’ scenario, and not spending their money, earlier on in life. And Sir Andrew Dilnot sees change here as required by government, in order to discharge any government’s duty to provide an environment in which people’s lives can flourish.

So, the fundamental issue for Baroness Casey, regarding charging reform (featuring, for instance, a lifetime cap on one’s charges, and a much higher threshold before one is left to one’s own devices for care home care, as per the Dilnot recommendations) – is HOW to fund it, not whether.

And most commentators are hoping that the Baroness will ‘advise’ Wes Streeting and Sir Keir Starmer that she just won’t take up the poisoned chalice, if it is all designed to come to nothing, by dint of the current timetable.

The essence of Sir Andrew Dilnot’s scheme was to oblige everyone, however rich or posh, or culturally disinclined to rely on the State, they had been brought up to be, to put their social care needs through for validation by the Council sector – through the Care Act, that is.

That would have ensured that social work remained a profession that had to be funded and properly trained; it would have ensured some objective standard for eligibility decision-making as to who is actually to be regarded as in need of anything, in the first place.

That would have encouraged the insurance market to put its foot back into the water for bonds of this nature to be developed, with sufficient guarantee of profit for those players, as to make it ‘worth’ their while given that insurance would mean that people would always be arguing about whether they ‘needed’ care, support, nursing, or just a bit of encouragement to look for the positive and what can be sourced in their own community, or a firm kick up the backside.

We would all then have been able to stop saving so MUCH for the unimaginable and unquantifiable cost of care – not stop saving altogether, but knowing that £86K was all we needed to ‘buy’ before the State would take the risk; if we wanted to waste more on really luxurious care, that was our own business, because we’d only get the cost of ‘adequate’ care put towards that cap, via the metering system.  

For most of us, feeling free to spend the money during our lives, would have contributed massively to the general sense of wellbeing in this country, which is all part of the politics of consent – consent to pay something, somehow, for our own care, in any event.

That would have made all political parties happy, but the cost of ‘bubbling up’ the grant money to local authorities for paying care home providers sufficient to keep going and to give up charging privately funded people a premium, to compensate them for the arbitrarily low rates paid by councils, was regarded as simply too much – the first time, the second time and the third time around.

It’s probably not ever been explained to the country in this way – probably because nobody’s actually explained it to MPs or Ministers in terms that they can understand. Sir Kier Starmer needs to put in the work, if the Treasury is to be told what must now be done. At least he is a lawyer!

The lack of grasp of what the Dilnot scheme could have done, within the press and the public, is a civil service / Treasury control problem, and a structural one, to do with where the duty to meet needs, lies (local government) and from whence the money for discharging that duty, comes (central government, in the main), and a fiscal one, to boot, after the last 10 disastrous years for the economy.  

But there is no political party with a prospect of coming to power that believes that all aspects of care and support should be free to all. One might limit it to personal care, but then there will be arguments as to what is care as opposed to support. There have already been arguments about what is registered nurse nursing, because that is free to people in nursing homes, and of course there is the surreal discussion as to what is a ‘primary health need’, (for qualifying for free CHC from the NHS) as opposed to ‘a really heavy-duty package within the power of the social services authority, to fund.

The care sector, and within it, the care HOME sector is a market that must make a profit, or at least reserves, if its members are to thrive, and it is all parties’ policy that we use a private market, rather than have ICBs and Councils providing directly, because it saves money on public sector pensions.

There is the additional problem that 50% of the cost of adult social care is spent on working age people’s needs, and the NHS uses its legal wriggle room to deny CHC status to more and more people, that is only going to increase.  There is an excellent article here from John Harris on what it feels like to be facing the transition of one’s child to adulthood, if they have a significant disability. https://www.theguardian.com/commentisfree/2025/jan/19/millions-shut-out-society-social-care-crisis-disabled-adults

Sir Andrew Dilnot’s scheme did not do very much for working age adults: they would be paying £86,000 out of income (including their disability benefits) by the time they were in their 30s, because of not having housing wealth, in the main – and then continuing in exactly the same way just because of that income, thus gaining no benefit. That was why there was a debate about the age at which their disabilities needed to start, in order that they be charged anything at all, and that would have led to hard lines which were and still are impossible to justify.  

The working age people most affected by this country’s continuing inability to sort out charging reform are people with lifelong conditions, learning disabilities and/or autism, many of whom are detained in psychiatric hospitals, without being treatably mentally ill in the conventional sense. The care they need is at the very top end of skill and management, and thus the most expensive.  It is simply not commissioned, because there is no money for it. They should be the responsibility of the NHS through CHC status, because of ‘priority’ and ‘severe’ plus ‘high’ scores across several domains of the Decision Support Tool, but the National Framework does not mention the word autism in the whole of its length.

This is a DHSC and NHS England problem, and one which requires legal acumen to sort it out.

8. Misuse / ignorance / misunderstanding of the Mental Capacity Act on the part of public sector/provider staff – whether with regard to agreeing or evaluating incapacity or to the rules of best interests decision-making arising from a finding of incapacity

The MCA has been in force since 2007. Several Parliamentary Committees have already noted that the NHS has been a long way behind the council sector in building the Act into education and ongoing training for professionals. E learning is helping but not ideal when the answer to a question about capacity and proportionality will nearly alwasy be ‘it depends….’.

The Act contains principles that tie everyone having anything to do with people with less than full cognitive functional capacity, whatever their role or purpose, onto a continuum of propriety – because it contains a test that works for every situation in principle. The test governs identifying probable lack of capacity in relation to the issue in question for that person, and the Act contains a set of rules as to how to go about making a decision for that person, if and only if one is satisfied that they do not have capacity for themselves, after all practical steps have been taken. One is the general principle that one should always try to do the least restrictive thing for that person’s freedom, both physical and more broadly, if one wants the protection of the Act from legal redress.

The two themes at the heart of the Act are a) about giving professionals in health and social services the legal protection they need for touching a person without the capacity to give informed consent and b) about giving people with less than full capacity every chance to hold on to their autonomy in as many parts of their life as possible, whilst ensuring that when something comes up that is beyond their cognitive grasp, other people are able to step in and have legal protection, as long as they stick to certain rules and principles. 

The MCA was always going to be relevant to safeguarding functions within the public sector, because of the principle of the presumption of capacity that applies to everyone until the contrary is established: this means that a person is assumed to be able to decide whether what is happening to them suits them or not. They are their own best interests decision maker if the presumption of capacity still applies. A view regarding lack of capacity is what lets safeguarding staff ‘in’ where it is felt that a s42 Care Act duty is triggered, because the person may well be able to protect him or herself from whatever it is that has caused concern regarding abuse or neglect. It is a breach of a person’s human rights to force safeguarding interventions upon them if they have capacity, just as much as it is neglect, to treat someone as incapacitated if in fact professional curiosity would make most staff doubt the continued applicability of the presumption.

It was always possible to use MCA principles in and about care planning or the creation of treatment plans, because the State is legally responsible for those plans and the staff must abide by the MCA before those plans are implemented, regardless of who is commissioned to deliver the plan. But this did not happen in general, although the Liberty Protection Safeguards (LPS) would have forced that general approach further into the basics of care planning and signing off a Care Act care plan. Instead, and ongoing, MCA compliance tends to be regarded as an issue for care providers, not the staff at the care planning and commissioning end of the sector and the LPS have not been a priority for implementation.

As time went by and litigation loosened up the definition of deprivation of liberty, the pace of business of the Court of Protection became rocket-fuelled by the fact that legal aid lawyers can earn legal aid funding very easily by challenging a care plan including deprivation of liberty in a care home or hospital on the grounds that the person in fact does not lack capacity, or more broadly, even on the basis that the plan is not in the best interests of the person in question even though they are agreed to be lacking in capacity on the issue in question.

This greater focus on the MCA, and its adoption as the means to drive litigation forward, to sustain law firms which previously focused on judicial review and public law, has meant that parts of the NHS and council sector have come to believe that every step the staff need to take under the MCA requires use of these rules, every time. This is somewhat better than a culture where it’s not ever used just because it’s obvious to everyone that the staff ‘meant well’. But it is indicative of a problem with regard to the educational curriculum for medicine and nursing and social work, and within learning and development, in 2025, given that the staff in question make a claim to professionalism, if they are not bothering to read the rules for themselves in the Guidance and in fact the rules in the legal framework itself. Once again, the Ombudsman’s reports are testament to just how poorly the MCA is understood and applied in the real world.

In some parts of the sector, there is a perception by members of the public (who are themselves often unaware of the rules, and think that because they are related to someone, that is what makes them the decision-maker in the first place, which is not correct, in the context of funded health or social services interventions) that staff have ‘weaponised’ the MCA as a useful excuse for not going along with relatives’ concerns, or not accepting their suggestions about interpreting the communication strategies of their loved ones. Someone’s bare ‘capacity’ and apparent refusal, with regard to information sharing, for instance, can be a great excuse for not sharing a vital previous care plan or assessment documentation, with the very people who are most likely to have sufficient understanding of the person at the centre of the process. They now have to have the additional energy to be able to read up on their loved one’s rights, the legal framework, etc to spot misuse of the MCA.

There is concern too that the MCA is used to alienate people’s relatives from vulnerable adults in care homes and supported living facilities, for whose care and support the sector is legally responsible, in the absence of purely private arrangements.

9. Hospital Discharge policy, regarding the lack of clarity of the lines of responsibility for the first care package after discharge

The Care Act used to contain a schedule governing hospital discharge procedure, in order that the NHS could enforce Delayed Transfer of Care fines against the Council Sector for just not getting on with the job – creating the phenomenon known as ‘bed-blocking’.

When that was decided to be strategically wrong, and that integration between the NHS and the council sector would not ever progress against that sort of seedbed for conflict, given that austerity was the issue for the inability of councils to employ enough people and commission enough homecare hours or care homes to get people out promptly, something was required to replace it. Covid pressures forced the DHSC and NHS to think hard and the Care Act hospital discharge rules were revoked and earlier work on ‘Discharge to Assess’ Policy was made to apply nationwide.

This policy means that people are expected to be moved out of hospital BEFORE their Care Act or other forms of assessment, so as to maximise bed space in general hospitals.  D2A guidance is binding on Integrated Care Services as guidance, which means that they are free to interpret it for themselves for local circumstances.  Much of it relates to duties in other legislation, and so where it says ‘must’, it means what it says – involvement duties, for instance, now that the NHS staff are driving the arrangements for the period after hospital whilst one is still potentially quite dependent but not needing treatment in hospital.

The funding arrangements for that first period may be shared between the NHS and the Council as part of an integration plan – and be called reablement or intermediate care.

They may be funded wholly by the NHS as ‘step-down’ care for people most often with a complex set of presenting needs who may need to be assessed for NHS Continuing Healthcare. Or they may be funded wholly by the person, or the Council, if the person is eligible for adult social care services, by reason of needing the State to make the arrangements for them, and/or a funding subsidy because they have less than £23,250 in assessable savings.

The trouble with this policy is that it is putting off the Care Act assessment to a point some considerable time after it has become due, so that the NHS can function reasonably efficiently. It is done in the name of prevention and reduction of need, on the footing that nobody’s long term needs will really be ABLE to be assessed when they are still in hospital, or so soon after hospital discharge, and that it is better for everyone to do that evaluation when people have ‘settled’ for a short while. That is not unlawful, as such, but prevention and reduction inputs must be accepted by the people to whom they are offered, if they are to be able legitimately to put off the duty to assess, and this means that people need to be able to make an informed decision about what is being offered. That means they need to know who is paying and who is responsible for their care, in terms of the contract with the care provider, as well as who is going to assess them formally, for the next stage onwards, and when. 

This is heart of the problem: a look at Ombudsman’s reports over the last 6 months shows complaint after complaint about people being misled with regard to how long the care would be free for; who was in charge of the arrangements, when charges would start, and who would be needing to take over the arrangements if the assessment were not to be done on time, and what should the consequences be if it all went very wrong?

D2A guidance is intended to run in parallel to the NHS Framework on Continuing NHS Healthcare status and funding for people with a primary health need after an exercise called a DST mapping process of the person’s health and social care needs onto a scoring matrix to support decision making about whether the person’s needs are for the health services, for social services or for a mixture of both, to fund.

The two documents do not sit easily with each other as they are revised on a different rolling cycle by different people with differing amounts of legal framework knowledge; perhaps even with differing attitudes to the relative importance of the public being able to understand the Guidance and its underpinning in the legal framework.  It is fair to say that D2A represents a 180 degree turnabout in what central government and NHS England envisage as the best way to sort out the interface between two types of agency, one central and one local, operating under different legal frameworks, one chargeable and one NOT, to the members of the public unfortunate enough to find themselves in that space.

The funding arrangements for that first period may be shared between the NHS and the Council as part of an integration plan – and be called reablement or intermediate care.

They may be funded wholly by the NHS as ‘step-down’ care for people most often with a complex set of presenting needs who may need to be assessed for NHS Continuing Healthcare. Or they may be funded wholly by the person, or the Council, if the person is eligible for adult social care services, by reason of needing the State to make the arrangements for them, and/or a funding subsidy because they have less than £23,250 in assessable savings.

The trouble with this policy is that it is putting off the Care Act assessment to a point some considerable time after it has become due, so that the NHS can function reasonably efficiently. It is done in the name of prevention and reduction of need, on the footing that nobody’s long term needs will really be ABLE to be assessed when they are still in hospital, or so soon after hospital discharge, and that it is better for everyone to do that evaluation when people have ‘settled’ for a short while. That is not unlawful, as such, but prevention and reduction inputs must be accepted by the people to whom they are offered, if they are to be able legitimately to put off the duty to assess, and this means that people need to be able to make an informed decision about what is being offered. That means they need to know who is paying and who is responsible for their care, in terms of the contract with the care provider, as well as who is going to assess them formally, for the next stage onwards, and when. 

This fog is at the heart of the problem: a look at Ombudsman’s reports over the last 6 months shows complaint after complaint about people being misled with regard to how long the care would be free for; who was in charge of the arrangements, when charges would start, and who would be needing to take over the arrangements if the assessment were not to be done on time, and what should the consequences be, if it all went very wrong?

There is no governance of D2A, it would appear, because the NHS doesn’t DO governance, and the council sector has forgotten what it means.

11. Systemic delay in the application and decision-making systems for Disabled Facilities Grants / the shortage of occupational therapists to apply the criteria for a DFG / the charging system for DFGs

Disabled Facilities Grants are provided by Housing Authorities under the Housing Grant, Construction and Regeneration Act so that people with disabilities can make their homes better suited to their condition. The grant (maximum £30K at the moment) It is a mandatory duty (ie it must be paid) where the Housing Authority determines that it is necessary according to a set of parameters in the legislation.

The government has recently announced an £86m boost to the funding taking the total annual spend on DFGs to £711m.

In order that the duty is triggered, the relevant council needs to be happy that the work is necessary and appropriate to meet the disabled person’s needs and reasonable and can be done practicably, with regard to the age and condition of the property

Like all public law duties, the duty has been subject to development through decided cases – such as McKeown in which Islington Council refused a DFG on the footing that it would be better if the person moved.  The High Court quashed the authority’s decision that the tenant should move rather than adapt the property on the basis that it was unlawful to take that broad an approach to reasonableness.

There is a means test and the possibility of recouping the cost via a charge on the property itself, which tends to ensure that people stay put. The means test looks at the finances of not just the disabled person but their spouse or partner too. So it is not unusual to go through the process itself only to decide in the end that it’s not something that one can afford, and then the question arises whether one would have just been better off asking the social services authority for the adaptation under the Care Act. Minor Adaptations of less than £1000 are free under the Care Act; anything else can be charged for in the discretion of the council but they would need to apply the Care Act means test instead, or make decisions about the maximum percentage of the allowable cost that they wished to be seen to make, and decisions about how to recover the cost.

DFGs for children do not involve a means test of the child, but of the parents, and the same issues arise with regard to why the services should not be provided under the Chronically Sick and Disabled Persons Act 1970, which still covers disabled children and which references adaptations as well. Lawyers suspect that the principle of statutory interpretation – that a mandatory duty trumps a less specific or beneficial duty – so that the member of the public can look to the agency with the primary duty – also means that the member of the public MUST look to the primary duty – but here, the two duties each have benefits and disadvantages which make it difficult to guess what the law would be. Where a DFG has been refused by the Council there is no doubt that recourse can be had to the other options, but if a person him or herself has refused a DFG, it is considered possible that the social services authority could treat the impact of the person’s disability on their wellbeing as less than significant and thus not eligible.

People of all tenures can get a DFG – even council house tenants; but the government does not allow local authority housing stock owners to spend the money from the DFG fund, presumably to prevent conflict of interest and to ensure that a wider range of housing – including owner occupied housing, becomes adapted for people with disabilities.

Before the trigger point is acknowledged, Housing Authorities are allowed by the Regulatory Reform Order to choose to offer a number of things which may make many people happier than having a grant, given the means test looks at the finances of the household, not just the person with the disability. This approach – keeping the duty in place whilst endeavouring to satisfy the purpose through other discretionary means – is often used by governments when repealing the duty would be politically unacceptable, but the cost of so doing has become something that is not a priority for funding. The council is not allowed to refuse to make a decision on a DFG, however.

Most councils run a system of stretching out the application stage, because there is a statutory time limit for the decision and the payment of the grant (6 months) and 12 months thereafter for the payment of the grant.

An application for a disabled facilities grant must be made in writing and must include details of the works needed, at least two estimates of the costs of carrying out the works and details of any other services and charges such as the disconnection of utilities.

But there is no national application form, so local authorities are entitled to set their own local concept of what amounts to an application, which means that they can force people to jump through hoops, which in turn, depend on an occupational therapists report.

There is a nationwide shortage of occupational therapists, which no amount of extra funding in the most recent announcement from central government will do anything about.

The OTs are often employed by social services authorities (who could be county councils, whereas the housing authority operates out of the district council) and the OTs may be juggling all of their ordinary Care Act responsibilities regarding early prevention and reduction through equipment and the maximisation of independence through re-ablement; they may be busy with safeguarding or community care package reviews – such that despite a duty to co-operate, there is always a long waiting list for the OT’s input into the application for a DFG.

12. The level of pay that is able to be afforded by central government funded local councils, for care providers / care staff in the context of attracting diversity of staff and providers and keeping them in the sector

The Sector Pulse Check report highlights how the current approach to adult social care funding simply isn’t working; the sector remains in a sustained crisis. In 2024, the top financial pressures were workforce-related costs sitting at 90.9%, utilities at 38.8%, unpaid delayed bills by Local Authorities at 29.1%, and maintenance costs increasing to 25.5% from 15.6% in 2023. The authors believe that the best way to fix these problems would be higher pay (84%), terms, conditions and benefits aligned to the NHS (65%) and greater respect for the profession (34%) would make the biggest difference.

For that, more people need to rate the importance of social care akin to the importance of the NHS, and the NHS itself needs to respect social services differences and different legal obligations.

85% of Local Authority fee increases did not cover the costs of a higher National Living Wage – up from 78.5%, the previous year. 29% of providers are operating at a deficit – and the size of the deficits of 60% of those providers have increased in the last year.

57.8% of providers report that the challenging nature of the work is affecting recruitment. Other top issues include pay rates (85.7%), poor perceptions of a career (61%), and better opportunities in other sectors (47.4%), all leading to greater problems in acquisition and retention.

CASCAIDr CIC believes that obligations put into statute, by cross-party agreement, should not then be underfunded simply because the Treasury wields such great power in the firmament of government, or holds on to the notion that people’s housing wealth should pay for care.

Local government is not able to print money, use a social care credit card for discharging its statutory duties, or take long term decisions for the local area, if it has to spend 60% of its budget on adult social care, and that budget is inadequate in the first place.

Providers of care and support cannot afford to provide decent standards of input and staffing if they cannot command, like any other business, a market rate, due to the fact that their purchasers are largely public sector dominant purchasers, not subject to the Competition legislation.

The uneasy relationship between the State and the provider sector, even the voluntary sector segment of that sector, does not operate as a partnership, or on a level playing field. Money is what it comes down to, if local authorities and ICBs are just going to be commissioners, and not employers of the people that need to do the work so that society can carry on functioning. Merely hoping that they can stimulate the market – or rather, control it and keep it afloat, is naïve and beyond any creditable or credible response by a government in touch with what is really happening in this country.

If care providers understood that the person’s personal Budget under the Care Act must be sufficient to cover the cost to the local authority of meeting the needs to a professionally defensible appropriate standard, and that by ENGAGING with these tender offers, providers are handing the commissioners an evidence basis that care CAN be bought for these sums of money, (because after all it IS being sold by apparently willing providers who DO still sign up to contracts offering unviable rates), AND they understood that the commissioners are the servants of the Care Act, which imposes a statutory DUTY on social services authorities to meet eligible needs, AND providers stopped engaging, without behaving anti-competitively, Councils would not be able to BUY services but would still need to PROVIDE – at double the rates being offered by commissioners, because of what it costs to employ staff in the public sector. And the Government – regardless of whether there was a National Care Service and regardless of the political colours of future government, would have to fund the obligations it put into the statute over 10 years ago – or repeal the social services safety net. Killing it softly by crashing it into the buffers is not ethical or appropriate.

Data from the mandatory capacity tracker imposed on the sector since Covid reveals that care home occupancy for older persons nationally remains stable at around 85%, with over 43,000 beds currently available for admission. Professor Martin Green OBE, chief executive of Care England, said: “This is not a capacity issue; it’s a planning, funding, and co-ordination issue. Care homes across England have been reporting admittable vacancies, yet the system is unable to utilise this capacity effectively. We warned the Department of Health and Social Care (DHSC) about the risks of inadequate winter planning before. These warnings were ignored, leaving hospitals struggling to manage the entirely predictable pressures of winter.” He maintains that the Improved Better Care Fund (iBCF) has remained at £2.14 billion since 2022-23, despite rising inflation and increased costs – eroding the of purchasing power of local authorities who are now unable to meet the critical objectives of the iBCF policy framework…The absence of winter planning signals a ‘business as usual’ approach, which is both dismissive and dangerous,” says Professor Green – “It fails to recognise the cascading effects of delayed planning, chronic underfunding, and systemic inefficiencies that leave the NHS struggling to cope.”
 

13. Inadequacies in public sector training, government Guidance and information online, regarding the legal framework of rights, obligations and human rights to respect and dignity in the context of adult social care

In this country, public law is the area of law which governs the behaviour of public bodies which operate under statute. The law determines what they have to DO, and who can qualify and for what and on what terms. It is part of the rule of law that they are subject to control by the Courts, just like any other sort of entity, and all of us as individuals. This species of law and legal principle is known as administrative law, and community care law and health care law regarding people’s rights and freedoms in the context of health care are part of that specialist field of law.

Social work students are told that legislation exists which they will need to understand, if they go on to work in the public sector;  they are not told about how public law operates and how such Acts as the Human Rights Act and Mental Capacity Act are interwoven through and underneath more specific legislation such as the Care Act, the Mental Health Act and the NHS Act. They are not taught to expect the very most fundamental underpinnings to change when there is judicial review about this or that – whereas those judgments can change the legality of charging for mental health aftercare, for instance, overnight, or expand the concept of what even counts as social care, overnight too, for ALL local authorities; and likewise for hospitals, for instance, regarding hospital discharge of people with issues related to mental health or mental capacity to consent to being discharged. Those who make the move into public sector social work must then set aside their values learned during their degrees in order to do well and be regarded as fit for practice, which involves discouraging as many people as possible from actually triggering their entitlements. It could make up a chapter in a Kafka novel, it is so surreal and riddled with disinformation and disingenuousness.

Advice and information obligations owed by councils can only be delivered upon if staff there and within the voluntary sector actually know the legal framework governing how the local system works. If they don’t, they will unwittingly feed the rhetoric put out by some in the sphere, to the effect that social services are there for everyone and can deliver idealised quality of life.

This is not the case; it is not the design of the legislation and it was not the intention of those who first conceived of the distinction between social care, and the health service. It is there as a safety net only, but it is sufficiently starved of resources as not to be able to do one thing which would help, which is to provide advice and information and steering to preventive services which have themselves been funded by public money – not the Big Society, on its own.

Advocates funded under the Care Act can only function and stand up for people’s rights if they know what they are, and know a statement of position to be rubbish, when one is asserted to them by a senior manager in the council or ICB. 

The Local Government and Social Care Ombudsman’s reports showcase a sector operating in almost an a-legal manner, if not an illegal one, and most often it is simple ignorance, rather than machination, in our experience.

The Ombudsman’s work seems to make little difference to the rate and thrust of complaints coming forward. It does not seem to underline that it is maladministrative in the first place for public sector staff not to know and understand and apply the legal framework governing their day jobs; nor that precious and scarce resources are used up when complainants feel strongly enough about being wronged, as to make use of the Ombudsman’s service, so commonplace.

But this level of ignorance across health and social care professionals also makes for time-wasting, chaotic decision-making, overload within the complaint systems, conflict between agencies who are under a legal duty to co-operate rather than conduct guerilla warfare, massive and avoidable stress and frustration for people already exhausted from caring, and obvious and avoidable harm to wellbeing, whilst also fuelling the ‘industry’ within the Court of Protection, alongside freely accessible non-means tested legal aid for challenges of a certain nature, under the Mental Capacity Act.

14. The limited rights of parents of people with a lifelong cognitive impairment or neurodivergence / Deputyship and Power of Attorney issues

In this country, when people have children, they have a set of legal rights and responsibilities with regard to those children, their health, education and wellbeing, which can be enforced by them and against them through (for instance) the Children Act, the criminal law, and children’s social services and education authority services. Children have human rights, too – from the minute they are born. Parental rights diminish during the teen years, in recognition of the real world features of children maturing, and needing to practise a bit, before they are fully adult, at taking on more autonomy. But when a person becomes 18, they cease to be the responsibility of their parents, and that has legal significance as well as financial and emotional significance too.

Children born with disabilities, or who develop them in childhood, whether through illness, mental ill health, accident or developmental delay, have a chronological age and a learning / development / milestones age. From the chronological age of 16 onwards the Mental Capacity Act applies to them, just as it does to adults, meaning that the law and principles within the Act, and the guidance in the Code made under that Act, together with the Court of Protection are all part of the legal framework supporting and protecting that child and their rights, in correlation to their mental capacity. The zone of parental rights and responsibilities diminishes from around the age of 14 onwards, whilst the child’s rights expand.

Parents cannot give consent in lieu of their adult son or daughter, to health interventions. They cannot sign tenancies for them, just because it would be a good idea or because social services want them to, so that housing benefit begins to flow for the rent. Parents are not allowed to decide – however well they know their adult offspring, and regardless of how well they’ve fought for them through the education or children’s social services system, and regardless of how much they WANT to do for them, on an ongoing basis, whilst they are still able to do so – how people who are over 18, should live, what their religion, sexuality or identities should be, with whom they should have contact, etc. They are of course allowed to have a view, but that is because if their adult offspring lack capacity in any of these regards, the parents will, as long as behaving appropriately, in the widest sense, count as best interests consultees. But the view that is relevant is not their view as parents and people in their own right, but their view as to the best interests of their son or daughter, which is not quite the same, necessarily.

In England and Wales (Scotland has different laws on this topic, and so does Northern Ireland, because it still uses the common law of necessity for determining the legality of decisions about treatment and touching a person) a person with sufficient capacity to do so, can grant a power of attorney to anyone they like (over 18) regarding their finances and property – or about their health and welfare, for the point when their capacity might be lost, later on (before, even, with regard to finance and property, where help is needed to manage). If they have already lost capacity to the point where it cannot be said that they understand the purpose of that sort of an instrument or make an informed decision about handing over authority of this nature, then deputyship is the only solution, and the Court of Protection is in charge of the content of deputyship orders.

There is dissatisfaction on the part of some parents as to the way their rights are cut off at the age of 18 when their former child’s developmental age is delayed or is never going to be that of an adult. There is also dissatisfaction as the way in which deputyship provides some clarity with regard to the scope of decision making for an adult son or daughter, but very little clarity when the decision maker as to what should BE offered in the first place, under the Care Act, the Mental Health Act or the NHS Continuing Healthcare Framework, is the State, because the State is going to be paying for the care package – and where the staff of that commissioning body will also assume that they are the decision-makers as to capacity as a prior logical incident of being the funder.

Providers, parents and social workers alike find it hard to understand the difference between public law powers to make decisions under the Acts which give people rights to funded services, and private law principles derived from the law of tort (assault and trespass to the person) and the criminal law (touching people without their consent) all turning on incapacity, but not giving anyone any more power at all, absent a special order for power of attorney or deputyship.

Additionally, Human Rights law sends its tentacles into all these spheres, and sometimes complications and conflict is multiplied by the fact that a council will occasionally itself take deputyship (for finances and property) on a status in relation to a young person.

The lack of resources in the DHSC for an overview of the implications of this web of rights and interests  makes for a cauldron of bluff and double-bluff, when it comes to relations between commissioners, the people drawing on services, their supporters, and the paid care provider, as to who is ‘in charge’ and to what extent.

Waiting for case law – the contents of which are unpredictable and the impact of which is ad hoc, is not enough to sort out this particular problem, it is suggested.

15. The approach of commissioners to the content of personal budgets and individuals’ care plans in Supported Living settings, where the housing element is not provided or funded by the social services council.

Supported living is not a Care Act service mentioned in the Act (although a definition of it is relevant to two Care Act concepts in associated regulations: deemed ordinary residence and choice of accommodation).

It’s a euphemistic description of a care package that can only start, and which therefore depends on the person having housing of some sort – where they either live with several other people who are also in need of services, or which has at least the space for a carer.

It’s care at home, where the home is rented, in general, from a registered housing association or voluntary organisation (or a local authority) for the purposes of accessing unrestricted housing benefit/universal credit for the rent due.

The care package needed in this scenario is intended to be cost-effective for the commissioner, and much more so than meeting the needs of separate clients, living, say, at home with family, or in care homes for people with cognitive impairments – because of ‘shared care’ assumptions for at least the night time element, where that sort of input is compelled by the complexity or unpredictability of the needs across the range of house sharers. That may be part of a person’s Care Act care plan or provided separately by agreement with a provider as part of prevention and reduction input, and then not as part of the person’s s18 budget at all, and not then able to be converted into a direct payment…

So supported living is not really independent living at all; it is in some parts of the country a recreation of a care home environment without the obligations concerning the property itself, or the extent of regulation required for running a care home.

It’s a setting where one cannot have a gloriously ordinary life because it has been commissioned so as to depend on staff ratios across a group of people; people who cannot always speak up and be heard if the package gets thinned out by shortages of staff, finance, depleted margins due to a perception that there was no option but to allow the fee to be discounted, etc.

One to one hours in people’s care packages/budgets may then be doubled up to cover other people’s background care or oversight / loose supervision needs at the same time, and the care needs averaged out to a number per person in the public sector contract.

This mode of commissioning is the antithesis of providing a personal budget, and the Care Act prohibits it unless everyone affected agrees, which is at least a legally literate approach to risk sharing.

Unfortunately the people who are provided with supported living tend to be people with cognitive impairments and that then raises the question of who is agreeing for them, if they lack capacity to make an informed decision in this regard? This question is not even asked, let alone answered, by the Care Act Guidance or by caselaw, as yet.

In practice, the savings arising from shared care are hard-wired into both commissioners’ and providers’ vision for what is to be bought and sold, and the agreement to combine a care plan (each care plan supposedly having a personal budget, and thus combining a budget) is treated as a best interests decision by council staff. It is arguably unlawful because there is no provision for substitute decision-making even by a welfare deputy or welfare attorney – other than through the Court of Protection, which is assumed to be able to make any decision otherwise preserved by statute for a person lacking in capacity.

The fact that the housing is not provided by the Council sector, in terms of being owned, or even rented and then opened up to people needing it under a licence, even if not a tenancy, means that people cannot be told that getting the care that they need is conditional upon them moving. A Council cannot base a personal budget on the assumption that a person will go where they are signposted to, when tenure in that accommodation depends on them paying for that privilege.

Where a person will qualify for housing benefit (which does not depend on mental capacity to have a tenancy) and would like the feeling of having a tenancy, their own semi-secure space etc, and they have a deputy or attorney to sign for them, or the council gets the tenancy signed under an administrative authorisation by the Court of Protection perhaps in conjunction with a Deprivation of Liberty authorisation in the community for the person in question, there can be no objection to the person meeting their own needs through taking up a tenancy.

But where that is not the case for whatever reason, people lacking in capacity do not have access to Part 7 of the Housing Act (applications as homeless persons or persons threatened with homelessness) and are thus clearly able to qualify for what is called ‘accommodation plus’ provision, which is where the council DOES provide the accommodation, directly, by buying or renting it and then placing the person there.  Reference to this possibility needs to be put clearly into the Care and Support Guidance so that everyone knows about it.

It must also be put into the Mental Health Act Code of Practice, and care planners warned that they must ask themselves whether it is needed as a first step in discharging s117 functions.  People who are provided with aftercare under s117 must not be charged anything for it, because s117 Care is legally required to be free. This would get people on the Transforming Care queue OUT of psychiatric hospitals in less than 6 months, but is not done because it requires funding.

16. Lack of clarity about the minimum components of information exchange and validation, to a lawful Needs Assessment process, and variations from council to council 

Care needs assessments are the bedrock of people’s rights to a decent quality of life under the Care Act, if they have daily living difficulties due to illness, injury, or mental or physical impairments.

Section 9 (adults), s10 (carers) s12 and s67 set out that people are entitled to assessment on the basis of the appearance of needs, how assessments should be done and what should happen before they start (independent advocacy must be made available if triggered by substantial difficulty in participating in Care Act processes.)

The Assessment Regulations, the statutory Care and Support Guidance and case law in the Administrative Court provide more information as to how assessments should be made person-centred, subjectively led yet objectively determined, and delivered by the council or an authorised delegate.

That is the theory, at least.

In practice, even assuming that people get an assessment within a reasonable time of presenting their request for one, people do not always get sight of the questions in advance.

Local authorities run their Front Door / First Contact systems differently. Advice and Information is not always available about how the system operates locally, although that is a statutory duty. Pamphlets have gone out of fashion and there is talk at high levels about online assessment, and not merely done via a conversation over Zoom, but through conditional logic / AI / chatbots to help, etc – even though nobody can explain how a professional’s normal tools for evaluation and probing, which derive from their social skills and understanding of a person’s environment, are going to be able to be turned into tech.

CASCAIDr’s predecessor, CASCAIDr the charity, spent its last few pounds on obtaining advice from barristers skilled in public law principles and community care law in particular, which will shortly be made available to the public, to stimulate the debate between management, practitioners and the public about what is the minimum necessary degree of process to constitute a valid Care Act assessment.

There is no nationwide Care Act assessment form, and no requirement that Councils publish their practice guidance to staff, regarding how they should score people’s needs, within the confines of professional judgment. The assessment chapter in the Guidance could be rewritten to make Care Act assessment process clearer, and incorporate the case law that has been developing, together with references to some Ombudsman’s decisions on ‘fault’ in relation to assessment. The parameters for flexibility and proportionality could be set out and endorsed by the DHSC and the Chief Social Worker and not just left to the ideas of the public sector and consultancy firms.


If we are to have a National Care Service, it might well be a good time (bearing in mind that the use of public facing Resource Allocation Schemes is waning rapidly given increases in the market rate for care, which would have to be reflected in those programmes to make the figures generated by them, defensibly rational enough to comply with public law) to introduce some process that is then able to be embraced by all councils – if councils are in fact to remain in charge of adult social care? 

As has been noted by Phil Swann: “There was no acknowledgement in the political debate that followed the announcement of the Casey Review that the future of one of local government’s most important functions is at stake. Health Secretary Wes Streeting was quite rightly pressed to say more about what lay behind the government’s gnomic references to a “national care service”. He repeatedly evaded the question, and no reference was made either by him or his inquisitors to the implications for local government. There are only three passing references to adult social care in the devolution white paper.”

17. Apparent central Government disinterest in the Deprivation of Liberty Safeguards backlog despite people’s regimes being unlawful / delay to the introduction of the Liberty Protection Safeguards

The Mental Capacity (Amendment) Bill was drafted back in 2019 so as to bring about improvement in the system for scrutinising deprivation of liberty for people with less than full mental capacity. It was put on the statute book as an ACT, but not brought into force.

This much needed change would have come about through replacement of the existing Deprivation of Liberty Safeguards (DoLS), which are safeguards used for the protection of people who are deprived of their liberty but lack the capacity to consent to their treatment and care, with a new regime called the Liberty Protection Safeguards (LPS).

DoLS are a legal framework applying to individuals who lack the mental capacity to consent to the arrangements for their care. Where such care may amount to a “deprivation of liberty” (indicated by the fact of a regime amounting overall to continuous supervision and control) the arrangements must be assessed to ensure they are in the best interests of the individual concerned.

The LPS were going to cover anyone aged 16 and over, in any setting, thus solving the problem that the original Deprivation of Liberty scrutiny system was limited to care homes and hospitals; secondly the application of the safeguards was limited to those aged 18 and over. So young people in foster settings, Shared Lives, Ofsted registered facilities instead of CQC regulated services – and people of all ages in supported living or unregulated services such as day care settings, would have been covered.

The LPS were still imperfectly independent due to resourcing difficulties of sufficient staff with distance between them and the commissioning body but they solved another obvious problem: the statutory responsibility of the council or ICB to meet the needs has always been the feature that makes decision-making about capacity and best interests care planning a primary role for them, and not merely for a care provider who would be implementing the care plan in due course, in return for a fee.

It has been reported at high levels after formal investigation that the DoLS system is “broken and, as a result, thousands of people” were being unlawfully detained (albeit in a technical sense, not a pejorative sense).

There are still significant delays in processing the scrutiny, and a general poor understanding of the system by those involved in DoLS decisions. In statistics from late 2024, the proportion of standard applications completed within the statutory timeframe of 21 days was 19% in 2023-24, which is same as the previous year. The average length of time for all completed applications was 144 days, compared to 156 days in the previous year.

There were an estimated 332,455 applications for DoLS received during 2023-24. This is an increase of 11% similar to the previous year, which is closer to the rate of growth seen before COVID-19 (between 2014-15 and 2019-20 the average growth rate was 14% each year) following an interim period of relatively small increases in numbers of applications.

The proportion of DoLS applications which have an urgent authorisation attached was 58% in 2023-24.

The number of applications completed in 2023-24 was estimated to be 323,870. The number of completed applications has increased over the last five years by an average of 9% each year. The reported number of cases that were not completed as at year end was an estimated 123,790, a decrease of 2% from the previous year.

There are also knock-on effects, including that the new version of s.4B will not come into force to provide extended cover in emergency situations. Parts of the updated Mental Capacity Act (MCA) Code of Practice that relate to the main body of the MCA are badly out of date (click here for a legal expert’s guide to the passages in the MCA Code that are most out of date, together with the DoLS Code, because of being superseded by caselaw). 

Existing tools (i.e., the DoL Safeguards) for care homes and hospitals for those over the age of 18, have fallen into disuse and are now widely ignored for hospital discharge purposes even for pathway 3 patients going into a bedded setting. They are only mentioned as a governing principle in D2A guidance as opposed to being flagged up in relation to steps to be taken during the discharge process.

Schedule A1 to the MCA 2005 (in respect of DoLS), or the required input into steps mandated as part of the COPDOL11 process (for judicial authorisation of ‘community based DoL’) mean there is a tension between ordinary CARE Act process and decision making – the workforce shortage means staff have to take difficult decisions about priorities.

CQC’s Key findings for 2023-24 were as follows:

• Too many people are waiting too long for a Deprivation of Liberty Safeguards (DoLS) authorisation, despite multiple examples of local authorities trying their best to reduce backlogs and ensure sustainable improvement.
• CQC remains worried about the rights of people at the heart of the DoLS system, seeing people in vulnerable circumstances without legal protection, which not only affects them but also their families, carers, staff and local authorities.
• The system has needed reform for over 10 years. Unless there is substantial intervention, these challenges will continue.

In successive annual ‘State of Care’ reports, CQC has raised strong concerns about the operation of DoLS, including delays in processing applications and the variable knowledge of staff about the safeguards. Across both health and social care services, it continues to find that many of the issues outlined in the House of Lords report are still relevant 10 years on and have been exacerbated by the stark increase in the volume of applications, bringing new challenges for the DoLS system.

CQC finds a wide variation in how local authorities were managing applications in 2023/24. It was clear that some were struggling to process applications promptly enough, and yet one local authority had no backlogs. Its external stakeholders say that the DoLS system is “not working” and there is “no movement once the application has been submitted.”

Some local authorities had high numbers of applications waiting to be reviewed, which meant some people had been waiting for an assessment for over a year. When local authorities can carry out assessments on time, CQC is confident that this helps identify unnecessary restrictions so that DoLS conditions can be used to mandate that care arrangements are the least restrictive possible.

Local authority backlogs also have a knock-on impact on hospital and care home staff: while waiting for DoLS applications to be reviewed, they have to balance keeping people safe with protecting their rights. Inspectors report being told about staff feeling stressed and confused trying to navigate the DoLS system when waiting for an authorisation. Its inspections and assessments have also highlighted instances where backlogs in processing existing applications mean some care providers have stopped submitting new applications.

There is no legal reason, currently, to follow the best part of the proposed LPS, which was to get the elements of thinking that underpinned the LPS done further forward during care planning or assessment (ie regarding capacity, best interests and the necessity and proportionality of depriving the person of their liberty).

Nobody has brought to the Court a challenge to the current situation where non-means-tested legal aid is available where someone is subject to a DoLS authorisation and not where either the person is awaiting a standard authorisation and any prior urgent authorisation has run out; or the authority to deprive them of their liberty is being sought from the Court of Protection under the community DoLS provisions. 

The originally proposed regulations gave the right to non-means-tested legal aid from the point where the process of considering authorisation started, and continuing thereafter.

Prior auditing work of such things as the number of 16 and 17-year-olds affected will have become obsolete because they will now have reached adulthood.

The Government still accepts the need for change and is ‘pleased’ it made progress towards introducing the LPS. There was clear support for implementing the LPS to replace DoLS at consultation.

It was presented by the last government as a choice between implementing the LPS and funding uplift to the sector and taking forward the reforms set out in the Next Steps to Put People at the Heart of Care plan, which included investment in the workforce, technology and support for unpaid carers. No real decision, then, on that footing.

The previous government had said that it recognised the importance of updates to the Mental Capacity Act Code of Practice (MCA Code) being taken forward irrespective of LPS to ensure all those practicing have accurate and up-to-date guidance. That commitment was made in 2023 but no more of it has been heard since.

The previous government stressed that local authorities have a duty to make sure that they are processing all cases under DoLS and noted wide variation in how local authorities are processing and completing their DoLS applications. The previous government appeared to endorse use of the ADASS prioritisation tool to manage DoLS cases, although it has no legal force – and although the Ombudsman makes reference to that fact in public reports of complaints regarding unlawful deprivation of liberty.

As part of the recent Legal Aid Means Test Review covering England and Wales, the Government considered whether certain specified civil legal aid proceedings should no longer be subject to means testing arrangements. These proposals did not extend to the removal of legal aid means testing for individuals subject to deprivation of liberty in care settings where no authorisation was in place or in cases where the Court of Protection needs to make a deprivation of liberty order, and, therefore, this position remains unchanged, other than for under 18 year olds.

The previous government reminded the sector that training and learning on DoLS, which is free to access, is available through Health Education England’s e-learning for health platform as well as the Social Care Institute for Excellence’s website, but offered no suggestion how to make that training a priority or a requirement.

18. Lack of accessible Guidance for the public about the Court of Protection process for authorisation of continuous supervision and control in the community, for people lacking in capacity with regard to consenting to the care regime under which they are living

Judicial-Authorisations-of-Deprivation-of-Liberty-July-2022v1.pdf is a private sector guide to the form of authorisation needed from the Court of Protection for a person whose care regime cannot be lawfully authorised under the DOL Safeguards. This is known as a Re X application, or otherwise as ‘the streamlined procedure’. The gov.uk equivalent, is a webpage with a set of forms on it, which makes it less accessible for members of the public.

With regard to the intensity of care regimes provided to those adults lacking the capacity to decide on their care arrangements in supported living services, shared lives and extra care housing schemes, the Deprivation of Liberty Safeguards are not available in such situations, meaning that in theory, any deprivation of liberty will require authorisation by the Court of Protection.

A procedure has been established by the courts to enable the authorisation of the deprivation of liberty of an individual over the age of 16 who lacks capacity to consent to their confinement.  This procedure can be used in any setting where the DOLS authorisation procedure in Schedule A1 to the MCA 2005 cannot be used, and also where the person is between the age of 16 and 18.

Important procedural requirements for the participation of the person P, and the arrangements for funding that person’s representation are being developed by the Courts in case law and rules of course, in spite of the apparent lack of interest (or money) on the part of the DHSC or Ministry of Justice.

In 2024 a High Court judge issued a significant judgment for COPDOL work dealing with the ongoing representation of P during the time between a court authorisation of a deprivation of liberty and the next review

Under a DoLS authorisation (ie a care home or hospital) P would have an RPR (Relevant Person’s Representative) in place. In PQ, Poole J held that the same protection is just as important for those who are DoL in the community. Poole J held that in this P’s situation it would breach article 5(4) is she were not represented throughout this review period, not just when preparation for the next review starts.

Charles J has previously expressed frustration, in a judgment, for all to see, at the fact that:

“neither central nor local government are offering to create or to try to create a practically available resource to enable the COP to meet the minimum procedural requirements by appointing professional Rule 3A representatives.”

He understood that “full and investigative legal aid is not properly available for [the] streamlined process or any process that does not properly need a hearing.”

The Legal Aid Agency (LAA) “would not keep a certificate open indefinitely when there are no substantive legal issues to be resolved during a review period.”

This means that without some assistance from someone on the ground who considers the care package through P’s eyes, and so provides the independent evidence to the COP that a family member or friend can provide, the streamlined procedure will not provide an independent check that meets the minimum procedural safeguards required by Article 5 and the common law.”

Charles J’s judicial pronouncements in this regard have been described as Herculean efforts to find a practical solution that would comply with Art 5, in NRS, Re JM, and KT, but have not yet borne fruit. The solution of using COP Visitors has not taken hold. The time to secure the services of a Visitor is very often over one year and that Visitors are not being used as representatives of P during review periods. Newcastle’s stance raised eyebrows, country wide, amongst lawyers.

There is no specific application for purposes of seeking a review, and the model order provides that it should be made on a COP DOL11. A COP9 seeking an extension of time to file a review application will seldom be granted, as the judges take the view that there has been 12 months’ notice of the review date; that the first order sets out the duration of the authorisation; that if the review application is not filed in a timely fashion, the authorisation will expire; and a new authorisation will not be granted without scrutiny of continuing circumstances.

Charles J referred to these “budgetary battles”, laid them at the door of government but his plea for a resolution has been ignored over an 8 year period.

In the end, the State pays whether through legal aid or costs, and the solution to which Poole J was compelled to arrive means that the State will probably pay more than it should pay. The Official Solicitor did not ask the Court to consider the wider ramifications for the allocation of limited resources, but the potential ramifications were described as plain for all to see.

The solution, which lies in the hands of the state through central government and Local Authorities, is to fund a professional r1.2 representative. The failure to do so results in a solution in this case that probably imposes a higher burden on  the taxpayer. However, Poole J could not countenance the alternative of leaving PQ with no independent representation of any kind during the review period because that would not comply with the minimum requirements of Art 5.

19. Lack of clarity about the line between councils’ Housing Act duties and social services’ own powers to accommodate at least some people as essential to meeting their needs under the Care Act

A decision called Campbell in the Court of Appeal in 2024 has been published which has massive implications for councils’ housing and social care strategies, but is not being talked about very much.

The judgment holds that there are no obvious reasons why a council, acting under the Care Act, would have any reason or POWER to make a direct offer of accommodation as well as care, as part of a Care Act care package, to a person who is national of this country, however disabled and in consequential need they might be.

The decision envisages that such accommodation may be provided to non-nationals, because they are not able to use the Housing Act routes into accommodation as homeless etc (Part 7) or into social other housing through Part 6 of the Housing Act due to their immigration status excluding recourse to public funds and the Housing Act. Applying for social care is not regarded as access to Public Funds, in legal terms, but s23 Care Act prohibits social services councils from doing under s18-20 of the Act, (meeting needs under powers and duties) anything that a Housing Authority is required to do under the Housing legislation.

The Court interpreted the duties in the Housing Act to include duties to accommodate (interim and temporary accommodation for people applying as homeless, whether pending enquiries being completed, or over the longer term) and the duty to allocate housing according to the Housing Register allocation scheme running in the area.

If this decision is correct it means that there could be people on the streets with eligible assessed Care Act needs, because accommodating them in order to provide care to them would be seen as jumping the queue; likewise, people from abroad with such needs (or even non-eligible needs, as long as they have some needs for care and support) being able to be accommodated, because of their human rights being made specifically relevant to the situation of a person subject to immigration control.  That is not likely to suit any government, it is suggested, in terms of the public’s perceptions of the overall fairness of that situation.

People with s117 aftercare rights would not be affected in the same way, because s117 provision is not restricted by anything like s21 or s23 Care Act and people with immigration status and aftercare needs can still ask for accommodation as part and parcel of their s117 care package after leaving hospital. 

People without mental capacity to sign a tenancy, and without deputies with a specially worded form of legal authority) are not allowed to access Part 7, due to an older decision which has since been upheld, saying that homelessness applicants must have sufficient mental capacity to work through the process and understand a tenancy. They would not be affected by the decision, and could still ASK for directly provided accommodation to be included as the necessary prerequisite to care that they very much need being able to be put in.  That would mean that at least people with significant degrees of cognitive or neurological difference or disorder would still be able to assert accommodation ‘plus’ levels of need.

The Care Act specifically allows placement in premises of some other type than a care home, and we do not think that that means only short term hostels or bed and breakfast accommodation. Urgent provision can be made under s19 Care Act and this is the sort of accommodation with which people are provided with at the moment, precisely because the Housing Sector sees the Housing Act as dealing with general housing needs (although there is no legal justification for so doing). Section 19, however, is included in the sections which are affected by this recent interpretation of s23.

That could be easily changed, so that at least urgent provision was still permitted.

20. Lack of clarity about challenging NHS decisions about eligibility and Care Plans and budgets, for people with a possible primary health need (Continuing NHS Health Care)

A recent ‘Age UK’ report points to the growing divergence between how NHS Continuing Healthcare funding is supposed to work, and how it actually works, using official data about trends in the award of CHC funding and evidence from its advice line.

Recipients of this free funding status, derived from the legal framework interface between the NHS Act and what is now the Care Act, typically fall into three categories: people at or near the end of their lives; frail older people with complex physical or deteriorating conditions affecting their cognition and presentation; and people aged 18 and above with long-term complex needs.

Unlike the usual local authority route for accessing social care, CHC is not means tested and an individual is not expected to make any contribution towards the cost of their care. Councils are not allowed to provide social care services to people with full CHC status – it is beyond their legal powers.

In theory, eligibility decisions should be independent of budgetary constraints and finance officers should not be part of a decision-making process. However, in practice, the NHC bodies that administer CHC, Integrated Care Boards, and their predecessors, have been under pressure to make savings from their CHC budgets for at least the last seven years. 

Comparing the NHS bodies responsible for CHC – Integrated Care Boards – the number of recipients varies by 3.5 fold, from 86 per 50,000 population up to 300. In addition, the proportion of assessments for CHC that actually result in a person being found eligible varies from 3.4% to 57.9%, depending on where one lives.  

Nationally too, there is a steep overall decline in the numbers of people being newly assessed as eligible on the Standard pathway, from 4,628 in Quarter 1 2017/18 to 2,624 in Quarter 4 2023/24. This is a decline of almost half (43%). In contrast, over that same period, the number found eligible for Fast Track CHC has increased by almost a third (30%).

The process is routinely described as opaque and unfair, causing people and their families enormous additional stress at a time when they are already coping with the physical and emotional toll of being close to someone who is extremely unwell or dying.

Age UK has observed that what makes these battles for CHC even worse is that the stakes are so high: being awarded CHC funding can make a big difference to the quantity and quality of care that a person is able to receive, particularly with regard to access to specialist healthcare arrangements. The outcome also has a huge potential impact on people’s finances, given that an older person in this position is likely to require intensive social care support that quickly generates very large bills which their housing wealth will be sucked into paying.

Age UK’s director Caroline Abrahams has commented that the interface between these two funding statuses is also a recipe for deepening inequalities, since more advantaged families are much better able to fight for their rights than others; in addition, the extreme postcode lottery for CHC makes a mockery of the idea that this is a rules-based system which is not influenced by the state of local NHS finances.

Her view is that the funding status seems to be moving away from being a source of longer term care funding for profoundly frail and unwell older people, and people with lifelong disabilities, to one focused more and more on short, sharp injections of cash to support those at the end of life. With local NHS budgets under such pressure, the end result is that older people with ongoing chronic health problems, and associated high levels of social care need, are unfairly losing out. Yet these are the people who are most likely to face sky high social care bills. In this way the NHS is pushing its own financial responsibilities onto older people and their families or, in the case of those on low incomes and with few assets, onto their local authorities.  

We would add that for working age adults, whose access to CHC derives most often from learning disability, epilepsy and autistic spectrum disorders, as well as physical disabilities and road accidents, it is the local authority world taking the hit arising from withdrawal by the NHS from this sphere, because the council must pay for the shortfall between the person’s means tested charges contribution, and the full cost of the package, unless its NHS partners have adopted a forward thinking approach to shared care, even for those without CHC status.

In 2018 the National Audit Office was already saying that there may be differences in the way the responsible NHS authorities and councils were interpreting the National Framework to assess whether people are eligible for CHC due to the complexity of this framework. This apparent shift in the use of CHC is happening without any public debate, and in contravention of the spirit and sometimes the wording of the law and guidance. This is unacceptable, and it is also destructive, because it undermines public trust in the NHS. Policymakers should accept that CHC has become entirely unfit for purpose. It needs to be reformed, as part of a serious and transparent process of reviewing and restoring the supposedly integrated health and social care system more generally.

The single biggest problem is inconsistency about ‘checklisting’ – screening for indications that the person is in the zone for qualifying. This should mean that the NHS retains responsibility for them, because it has not finished discharging its statutory functions through lawful decision-making process. Since the 2022 redraft of the National Framework and Discharge to Assess, reasons for not ‘needing’ to checklist someone have proliferated – including the concept of not being ‘ready’ yet, whilst being medically optimised for discharge.