20th April 2021
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We must fix our broken care system so families don’t suffer like mine
Andrew Whelan, the founding chairman of Future Care Capital and Chief Executive of Westcott Care, explains how his family’s experience of the care system during his grandmother’s final years set him on a mission to bring about change.
Each and every one of us trustees at Future Care Capital has a very personal reason for being here. And all of us share a desire to ensure the organisation is so much more than just another think tank turning out reports that will end up on a shelf.
Future Care Capital’s mission is to inform, connect and transform and we are a charity dedicated to improving health and social care. But we come at it from a very human perspective. And when you start by looking at people’s actual experience of the system, you find it doesn’t really deliver or operate in the way we expect, or the way it should.
For me this all came to a head a decade ago, seeing my parents grappling with the care system after my grandmother began to decline. She was in her late 80s, quite frail with various co-morbidities, but she had been doing OK and living independently. At first she just needed a little help around the house: cleaning and the like. Then, as her needs grew, she had people going in to help her get up, prepare meals and go to bed. All of which she hated as she came from a hospitality background and couldn’t abide someone else ‘doing for her’.
She had an emergency pendant but didn’t wear it when she slept as it was uncomfortable. So when she fell out of bed one night and broke both hips she couldn’t call for help and wasn’t found until the morning. She was taken to hospital and the specialist there said: ‘You have two broken hips. We can fix that.’ So he referred her for a double hip replacement.
Now for me this is an example of how the system does not treat people as individuals. She was very frail and inactive yet at no point did anyone say: ‘Is a double hip replacement the right thing to do for a frail nearly 90-year-old who is never going to walk properly again even with new hips?’
Like so many others she was treated as the condition she presented with instead of as Elizabeth Rosta, grandmother of three, with various co-morbidities, whose quality of life is unlikely to be improved by the trauma of major surgery.
They went ahead anyway and before she was taken down to theatre my grandmother said she hoped she died peacefully on the operating table. But she survived, although she was left completely immobile. Eventually she was deemed fit for discharge to a care home (which was the last thing she wanted, but there was no way she could go back to her own house.)
My parents were set the task of finding her a suitable care home. The way the system works is they give you all the information, then it becomes your problem. So it was a case of ‘here’s a directory of all the care homes in a 20 mile radius… off you go. And if you choose the wrong one, it’s not our liability, we gave you all the information and you made the decision’. So in that respect they were covering their backs.
Now both my parents are doctors. Mum was a GP for 40 years and dad was a consultant at the hospital where my grandmother was treated. They thought they understood the system, but they really struggled when it came to getting the right care for her.
At one point my mum estimated she was spending 20 to 30 hours a week on the phone chasing people in different organisations because nothing was joined-up. And nobody seemed to be aware of what anybody else was doing for my grandmother - everything was always somebody else’s problem.
My parents knew to start with social services (my brother is disabled so they were familiar with that side of things). But they didn’t really know what to look for in a care home. They found what seemed like a perfectly good place (although as it turned out it wasn’t right for my grandmother’s needs). But they had little or no support with that process. All the discussion focussed on which public body (NHS and social services) wasn’t responsible for paying for the care! And of course the amount social services was willing to contribute was not enough for the chosen care home so my parents had to pay a top-up in any case.
The whole thing was topsy-turvy. The care home charge was treated by the commissioners (and by extension the providers) as a ‘hotel’ fee: a fixed charge for a room which happened to include a package of care. But surely the right way round is to pay for a package of care that, in this case, includes a room?
Those involved in the system will assure you that the individual is at the centre of everything they do; and for the individuals involved, this is certainly what they strive to do. But for my grandmother it felt like she was stuck in the middle while everything went on around her. It was a very fraught and emotive time for the whole family, not least her: the vulnerable elderly person in desperate need of care.
The individuals involved at all levels were the most caring people you could ever wish for. They were all trying to do their best but they were set up in a system that made it really hard for them to do their job in the way they wanted. So much time was wasted chasing funding and managing administration and bureaucracy – time that could have been spent caring for my grandmother.
She settled into the home better than anyone expected, though her health was poor. She had chronic heart disease and angina, but every time she had chest pain the home’s policy was to dial 999. So she ended up going back and forwards to A&E, particularly in the last three or four months of her life. At the hospital they would give her a spray for her angina and send her back to the home.
The final straw was she caught pneumonia – probably while sitting outside in a blanket waiting for the ambulance (we’re talking about Yorkshire in winter!)
My grandmother, the family and her GP had already decided that if she became very ill again she should be allowed to slip away peacefully. But on arrival at hospital they treated the presenting condition, not the patient. Why did they not have access to her notes so they would know that it was her wish to be treated palliatively? Or if they did have access to the notes, why did they not consult them? The answer is that they are busy A&E staff whose role within the system has become to treat the condition in front of them – they don’t have the time or opportunity to find out about the individual, their history, their wishes etc. That must be a very de-motivating job for people who went in to ‘care’ for patients, as well as being an example of how everything works in silos.
It was a case of: ‘Ah – pneumonia. We treat that with antibiotics.’ So that probably extended her life by about 48 hours though it was never going to do more than delay the inevitable.
The ward staff were kind but there was no space for her to be moved to a separate room so she was on a mixed ward, with curtains round the bed, and that was where she died a few days later.
Looking back on the whole sorry episode what strikes me is how many organisations and different elements of policies and procedures there were. And how very difficult it all was to navigate - even by people who thought they knew the system. Goodness knows what it must be like for those who don’t.
Also it’s such an emotional time for the family – they are the ones who need caring for, yet they are the ones who have to sort everything out. Where’s the continuity of care? We’re told the NHS is free and we celebrate that – yet in people’s hour of need there’s this constant haggling over budgets and who is paying for what. For the person needing care and their families, care is care, they don’t know or distinguish between different entities, roles and responsibilities: we just want someone to look after us when we need it. For those trying to provide the care, they are hampered by a litany of policies, procedures and protocols, which make doing their job considerably harder than it ought to be.
For me it’s clear the system doesn’t work in the way we expect it to. So do we have unreasonable expectations? Or is it that the system has evolved in a very bureaucratic, top-down, risk-averse way?
What happened with my grandmother is not an isolated incident. So many people I come across say the system is just not user-friendly. They have nothing but praise for the staff and people – from the porter to the most senior consultant, and even the commissioners, regulators and policymakers – all of whom are doing their utmost to care. But the bureaucracy and the protocols and procedures and policies, and the unintended perverse incentives and sanctions, all conspire to smother the good work the staff are trying to do. They are just not able to do what they went into care for which is to make a difference and help people.
And we have two parallel systems – the NHS and social care – that don’t really work well together. That can’t be right. If you were designing a system to meet today’s health and care needs you wouldn’t come up with the existing structure. It has evolved from a truly wonderful idea in the 1940s but it doesn’t meet the needs of today’s care consumer. The whole thing is too NHS-centric and focused on acute healthcare needs. These days we need more resources for chronic conditions managed in the community, including mental health and support with activities of daily living.
The system hasn’t adapted partly because we have an almost zealot-like devotion to the NHS. But I believe that it’s the concept of care that is free at the point of access and based on your individual needs rather than your ability to pay, that people are devoted to, not the organisation itself. Yet the two are often conflated. And in all cases it ignores the fact that the NHS is focused on healthcare rather than care in general. If you have dementia, for example, any medication you need, such as drugs, will be paid for by the NHS ,funded through general taxation. But the support you need for daily living is your own responsibility, unless you fall below a certain wealth threshold (currently around £23,000) in which case social services will contribute towards some or all of the cost of your care, such as the need to move into a specialist residential care facility.
So what would a fit for purpose health and care system look like? And how do we get there? Well, I don’t think we need another politically driven top down massive reorganisation where they shuffle the deck chairs structurally but the care consumer’s experience remains the same. The former politician Nigel Lawson is credited with saying: “the NHS is the closest thing the English people have now to a religion”. And that sentiment continues to stifle any public debate, sending any discussion down an emotional, rather than practical, path.
For example, it strikes me as odd that people get very exercised about the idea of ‘privatising healthcare’, without defining what we are talking about. They forget that GPs are, and have always been, private providers to the health service. As indeed are dentists, pharmacists, opticians and many others. Should we not be free to question whether the system does what we want to do and to debate freely fundamental questions, such as who should pay for what and who should provide it, without it being reduced to emotivally charged phrases and, therefore, taboo subjects?
So what’s the answer? For starters I’d like to see a change of culture to acknowledge that those in need of care are all individuals. I think people need a go-to person who knows them and will look after them as a client. This used to be the family doctor. You would have a relationship with them and they would be your single port of call to sort things out for you and guide you through the system to get what you needed. Somewhere along the line the system became supply-led and transactional: it is your condition that is treated rather than you that is cared for.
We need to have a grown-up debate about these issues and that’s where Future Care Capital comes in. I hope that by highlighting individual stories of people’s experience of the care system, including my own family’s story, it will reveal the many common threads and shed light on what works well and what needs to change. As the stories are shared people will say ‘that’s my experience too.’ And perhaps then we can get to work on fixing what has become a broken system by articulating a vision of what we expect our health and care system to do.
