While we’re still in the midst of a pandemic that’s inflicting so much sadness, suffering and loss, it’s important we take a step back now to consider the future of care for older people. It’s worth remembering, after all, that crises can often illuminate important factors that were always there but less visible in more normal times.
Underfunding meant care was in no position to withstand the pandemic
My first very obvious but fundamental thought is that after years of underfunding, care was in no position to withstand the whirlwind that hit it in the form of this pandemic. To take just one example, chronic understaffing and reliance on agency staff (alongside many other things), undermined efforts to keep the virus out of residential settings.
Before the pandemic there was general agreement that refinancing care to the tune of many additional billions was necessary, if not sufficient without a process of reform, and the pandemic reinforces this. There may well also be a need for emergency funding for care providers this year and next, if some operators face insolvency in the wake of the pandemic due to rising costs and vacancies.
What does good care for older people look like?
Refinancing is essential but what of reform? The starting point surely has to be considering what good care looks like for older people, and listening to what they say they want. We know the vast majority wish to live in their own homes for as long as possible, a sentiment the pandemic will have reinforced. This makes ensuring the availability of good care at home a top priority – though in the short-term we know demand is down for this too because of fear of infection.
Older people may also want and need other in-home support like cleaning, gardening and laundry – things ‘home helps’ did in years gone by and should perhaps do once again. Plus, given the desire to stay at home there should be encouragement and support to install aids and adaptations as a preventive measure. We also need a far wider range of affordable, supported housing options from which older people with care needs can choose.
In addition, there is a need for community support, including local social activities, mutual aid and volunteering opportunities, invariably run by voluntary organisations and grass-roots groups. This kind of support is not generally part of ‘care’ now, though it was before budget cuts did for it over the years. It doesn’t cost a lot but it can’t be done for nothing.
More recently, some of this community support has come within the ambit of social prescribing in the NHS – an important new funding stream. The NHS’s interest in tackling loneliness and isolation via social prescribing makes total sense: fulfilling activity is good for health, as well as making life worth living, especially for someone without a strong network of family and friends.
The numbers likely to find themselves in this position are growing because many more of us ageing are without children. Older people who are alone, especially when on a low income, have found it especially tough during the pandemic and some have got into serious difficulty. This points to the fact that support from family members, friends and neighbours is fantastic and should be valued far more by the State through more financial and other support for carers, but it can’t be assumed to be there for everyone.
Should we now formally privilege care at home?
I have always understood there to be, and supported, a ‘benign bias’ within care towards home care as opposed to residential care. However, some older people are told that they have to go into a care home if they are eligible for State funded support, regardless of their wish to remain at home, because this is deemed too expensive. In the wake of the pandemic I wonder if we should now formalise ‘home first’, perhaps by creating a new legal right for anyone of any age with care needs to live at home, within reason, if they wish. Not all would be able to take advantage of it, or would want to, nor would it be appropriate in all cases – sometimes a residential setting is what an older person needs.
However, for some it would make a big difference, including many who dread ‘being put in a home’ – always assuming the funding was there to deliver it, which applies to everything in this article. Given the capacity of COVID-19 to spread fast in shared living settings it could be a pragmatic and popular move. The principle is that when older people can have their care needs met in different ways, in different settings, within reason they should be able to choose – and not be unduly rushed into such a life-changing decision.
Care and dementia
I think it’s worth questioning whether residential care homes, as currently set up in this country, are always the best places for older people with advanced dementia, or whether other models might sometimes be better, drawing on lessons from abroad as well as innovative practice here. Tragically, the terrible toll of death and suffering in care homes during the pandemic has mostly affected older people with dementia, partly because more than 4 in 5 care home residents has the disease.
This brings home the fact that our failure to create a decent, sustainable system of care is also in part a failure to grip the challenge of supporting older people with dementia to live as well as they can. Thus there is a great shortage of health and care support for people living with dementia at home and their families too. We also know that the lack of community support to manage phases of challenging behaviour sadly leads some individuals and families to such severe crisis point that some are rejected by care homes as too costly or difficult to help, so the only place left is a mental health institution – desperately ill-suited to caring for them.
Some care homes do a great job supporting their residents with dementia through delivering compassionate and highly skilled care. There are some excellent care homes – but not enough. So much depends on leadership and staffing, and we know this is variable and often particularly challenging in care homes that mostly or exclusively take older people whose care is (grossly under) funded by the State.
Health support for care homes – should nurses become part of the staff?
Over the last 1 or 2 generations the clientele in care homes has significantly changed, not only because most residents have dementia now but also because they are usually coping with other serious long-term health conditions as well, such as frailty, heart disease and cancer. 20 or 30 years ago, many more residents had relatively straightforward needs. Not so today, and yet the staffing profile in care homes remains much as it was, with residential care homes (as opposed to nursing homes) rarely having anyone medically qualified on their in-house staff. This makes it all the more important for there to be really good primary and community healthcare support on tap when needed.
Unfortunately, during this pandemic many providers have said that this was simply not there for them, with the awful result that they were left to care for older people who were profoundly unwell and dying, though their staff were neither trained nor equipped to do so. There have been examples of very good practice during the pandemic; for example, geriatricians available 24/7 to all care homes on their patch via video link, but they are by no means universal and on the debit side there have been horror stories too.
The problems seen during the pandemic in getting the right healthcare into care homes are not new: before the pandemic many care home residents had less access to good healthcare than they would have done if they had stayed in their own homes. The NHS Long Term Plan, published last year, committed to rolling out everywhere an excellent ‘Enhanced Health in Care Homes’ (EHCH) programme, but the fact this was necessary reflects the unsatisfactory situation in many areas. Roll out is now being accelerated, but does EHCH go far enough? If most care home residents have very significant health needs, why aren’t nurses part of their staff? Is it time to consider this – in addition, of course, to increasing access to GPs and community health services like District Nurses, physios and OTs, and dentists?
It isn’t only older care home residents who often now have pronounced health needs, the same is increasingly true of older people who use home care too. This reflects a population that is ageing and living longer, but often with chronic health conditions. In most cases the care needs these older people develop are closely associated with or directly due to their declining health, making the demarcation between the two and how the systems that address them are funded increasingly hard to justify.
Parity for care staff with the NHS
If you start from the perspective of what most older people with significant health and care needs really require, the obvious answer is the right health and care input delivered by kind, committed and skilful staff at the right times and in a seamless way, wherever they live. I came to this conclusion myself when sourcing care for my mum, who has a serious brain injury and frailty and needs help with all the activities of daily living.
After trial and error I found the people best suited to be her live in carers were two former nurses who now rotate. As well as being committed and accomplished carers – a job that requires a lot more skill than usually appreciated – they are alert to her falling off her baseline in terms of her health and have the confidence and insight to know when it’s time to seek external clinical help and when it can be done without. Older people can deteriorate quickly so the ability to spot emerging problems promptly is crucial.
For older people like my mum with significant health and care needs, whose numbers are growing fast, ultimately it may be that we should follow the example of countries like Denmark and look to create new professional roles that fuse health and care skills, and/or develop new more integrated local approaches like the Buurtzorg model operating in Holland. Whatever the destination, though, surely the place to start is with a single People Plan across both the NHS and care, and a commitment to parity in the terms and conditions of staff doing the same care job.
This would significantly improve the pay of care staff and create new career pathways. It would be a fitting reward for the care workforce after they have shown such extraordinary courage and commitment during the pandemic. It would also turbocharge a transformation in how the NHS and care work together that is essential if we’re to create a more effective and resilient approach to caring for older people in the future.
In addition, the non EHCH strands of the Ageing Well element of the NHS Long Term Plan, which focus on providing urgent clinical support for older people at home to enable them to stay there, and rehab, also need implementing quickly. They are an essential stepping stone to a more joined up future and have capacity to make a big difference if we see further waves of coronavirus this year or next.
Fixing the blurred accountability for care – a role for ICSs?
I am pretty sure that Ministers are surprised and dismayed at discovering how little ‘control’ they have had over care during this pandemic. For a long time it has suited successive governments to be able to hide behind local councils when difficult questions were raised about the inadequacy of our care provision and its funding, but this crisis has shown the downsides. Ministers are quite rightly being held to account for the catastrophic loss of life in care homes, but the reality is that there are few levers for them to pull and accountability for care is blurred.
In Whitehall, both the Departments of Health and Social Care and of Communities and Local Government have a stake. In addition to the role of local councils as assessors, and raisers and administrators of State funding, most care provision is in the private sector, split between a small number of large providers whose financial arrangements are complex and often domiciled abroad, and numerous small ones, including family businesses. Because State funded care has contracted due to budget cuts about half of care home residents now pay for their own care and so have no relationship with the State; this made some councils reluctant to pass on pandemic funding to care homes for their benefit. A further corollary is that little care data is collected centrally – the department doesn’t even have a list of care homes.
Perhaps not surprisingly, some commentators are now asking “who should run care, the NHS or local authorities?” This may be the wrong question today in the era of Integrated Care Systems, which bring together both. Perhaps the right thing to do now, consistent with the overall direction of travel towards more local integration between health and care, is to give ICSs responsibility for care, certainly for those older people who need both. Whatever happens, though, accountability must become clearer, with a line back to the centre, so Ministers can feel the pressure of their responsibility for overseeing a decent system of care. The fact is care needs to look and feel much more like a proper public service, as near to being free at the point of use as we can manage. A wide range of funding mechanisms is available, plus lessons from abroad. Whichever are chosen, though, they will entail all of us contributing financially in different ways, including older people.
I have said almost as much about the NHS as about ‘care’ here, and that’s because for older people with significant health and care needs – the group that has tragically died in such numbers during this pandemic – both are equally essential. What matters most is that they get excellent clinical input alongside great care – both highly personalised. For those with less significant needs and for disabled people of working age, among others, different conclusions may be reached. One size needn’t fit all and indeed that would be the antithesis of personalisation, but everyone matters and at all ages if we need care it should be there for us.
After the pandemic: time for far-reaching change in care
The pandemic has shown that care in our country is not a system and that no one is in charge, yet every day millions of older people rely on good care, joined up with good healthcare, to stay alive, happy and well, and their families trust us to provide it. We promise that help will be there for all from ‘cradle to grave’, but during this pandemic we’ve fallen way short of that so far as thousands of older people are concerned, who have suffered grievously as a result.
Care has been through the fire and surely we can all agree that such a catastrophe should never be allowed to happen again. Far-reaching change, plus the funding to match, cannot be put off any more.