Dehumanisation in hospitals

I have many personal dislikes to language used in relation to older people or people who are living with dementia, but a particular phrase is the subject of this blog mostly because I think it says a huge amount about how the healthcare system sees the very people it is there to serve.

‘Bed blocker’ has become a commonly used phrase to describe a person who is medically fit to leave hospital, but who cannot return to their previous life – perhaps living alone in their own home – due to their personal care and support needs. People who are living with dementia, whether it’s diagnosed or not, are at particularly risk of longer stays in hospital and by default adding the unwanted stigma of being a ‘bed blocker’ to their already stigmatised life.

Such delays in hospital discharge are usually caused by our bloated health and social care systems arguing over who is going to assess, organise, provide and fund an appropriate care package. It is often exacerbated by health and social care professionals failing to communicate between themselves, external care providers, the person - the ‘bed blocker’ - and their family.

What is really lost when we talk about people who are in hospital for longer than they should be is that every ‘bed blocker’ is an individual with a rich life history, a home they are perhaps longing to return to, and immense confusion and frustration at remaining in hospital. No one is more greatly affected than the person who has been labelled a ‘bed blocker’, which is what makes this label all the more offensive.

As a frail older person with dementia in hospital you are largely powerless to decide when you leave, and to some extent, where you might go. Yes, you can discharge yourself, but many people don't have the physical or mental capability to do that, particularly in an environment that strips them of their identity and life skills. They may not be able to find their clothes and organise the transport needed to leave, let alone be able to access their bathroom and bedroom, prepare food and drinks or take medication once they are out of hospital.

The situation is particularly acute for people with dementia because they have increased care and support needs that are very specialised, and with our fragmented health and social care systems it can be difficult to agree, source and fund that specialist provision. The person themselves may not be able to make their own decisions, or possibly could but they don't have access to appropriate advocacy services, and if the person has a family, they aren’t always nearby to provide additional help.

These are older people who are frail and vulnerable, and yet they are seen as being in the way and wasting NHS resources, despite the fact that throughout their working lives they would have helped to fund the NHS. ‘Bed blocking’ has even become an argument for some people who are keen to promote euthanasia, a concept that I’m not sure could be any more dehumanising.

Technically, my dad was a ‘bed blocker’. The two inpatient stays he had whilst waiting for care home placements were lengthy – one stay was three months – and as he became more frail in the last few years of his life, he was admitted to hospital  from his care home with both chest and urine infections. As he was already in the social care system and with funding in place, he did at least have somewhere to be discharged back to, but the care home still had to assess him and agree to have him back.

We were more fortunate than many families whose ageing loved ones yo-yo between hospital and home, struggling in both settings, or who watch their loves ones deteriorating in hospital while they become pawns in funding assessments between health and social care services. Hospitals can be dangerous places for older people who are living with dementia, especially given hospital infection rates and staffing levels. Who would want to lay in a hospital bed day-after-day with only hospital food to eat and with an unbroken night’s sleep an impossible dream – it’s hardly a preferable choice is it?

Yet somehow the term ‘bed blocker’ makes it sound as if the person is actually deliberately blocking the smooth operation of the hospital by outstaying their welcome. It might be a simple term for a hospital manager to illustrate the capacity crisis in their service, or for a journalist looking for a headline grabbing phrase, but it remains about as far away from kindness and compassion as you could possibly get.

So can we ever get away from the term ‘bed blocking’?

Last Wednesday, 11 March, marked NHS Change Day, and although I didn’t personally get involved this year if I’d been creating a campaign it would have been around this issue. The NHS needs to get away from seeing people as a box to tick or a bed to empty. Integration (Joined-up thinking) may be a phrase even more overused than ‘bed blocker’, but I genuinely believe that the answer to many of the challenges the NHS faces with lengthy inpatient stays comes from the availability and funding of social care services.

When the fundamental issues of how and where we provide high quality care and support for frail older people are resolved, we may find we no longer have ‘bed blockers’. In the meantime, let’s stop giving the impression that patients are to blame for being in hospital beds and ditch this dehumanising phrase once and for all.

Until next time...

You can follow me on Twitter: @bethyb1886

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Joined-up thinking

When I last wrote about social care funding (Why are we waiting?), I implored our policy makers to produce a workable solution to end the uncertainty many people face about how they will pay for care. The recent announcement by the government that introduced measures designed to stop families having to sell their homes was generally welcomed, but so much more needs to be done to change the face of social care in England.

I have never understood, and I don’t think I ever will, the way in which we have managed to compartmentalise healthcare and social care. To me they are pretty much one of the same thing. Good social care alleviates the burden on the healthcare system. When people are cared for well within the social care structure, whether that is in their own home, or in a care home, they place less of a burden on the health service, freeing up beds in hospitals and appointments in clinics.

Yet while we have a National Health Service for healthcare, social care is a means tested system where financial goalposts can be moved by politicians and where, even under these latest proposals, so-called accommodation costs, such as food, heating and paying for a room in a care home are not part of the cap. So even though someone may need to be in a care home to receive the care that they require, for their wellbeing and safety, and certainly need to eat and keep warm in order to remain in good health, they are still expected to pay for that if they have the ability to do so (the cost will be around £12,000 in April 2017).

That would be perfectly fair enough, if only the same applied to healthcare. Yet that is free at the point of need, something I must add I wholeheartedly support, but I just feel that social care has become the poor relation. You can go to hospital, be given accommodation and fed, and yet surely we should be supporting people to avoid doing that precisely because acute care facilities cost so much and are under huge pressure, not to mention the negative effects on patients from lengthy stays in hospital.

Then there is the question of what happens to people when they enter what I would call the social care funding no-mans-land. Their need for social care has been identified, but the assessments need to take place and appropriate care sourced. Imagine what might happen to someone who doesn’t recognise their own need for care and doesn’t want to pay, or someone who knows they need care, cannot afford it, and must wait on one of these drawn out assessments of their finances to confirm that. In that intervening period they could easily hit a crisis point and end up needing our healthcare system to pick up the pieces, usually at great expense.

Then there are those who need social care when they are facing the end of their life. Hospices are wonderful, but there aren’t enough of them and they are generally focused on cancer patients. They don’t usually help people with dementia for example. So you could end up dying in hospital, something most people would never want to do, at home with less than adequate care if you don’t have a package of care funded, or die waiting for a bed in a care home to be found and funded. These ‘solutions’ are hardly something for our society to be proud of at this most sensitive time in someone’s life.

How can we ethically allow social care to continue to be the poor relation in the ‘care’ family? Health and social care should be a partnership, yet when it comes to financial demands, so often it is a competition to see which side can palm off their patient onto the rival just to ease their own budgetary constraints. As the desire for CHC funding has escalated, many people have even started up businesses to advise families on how to appeal, even after a relative’s death, against a decision to deny funding.

Then of course, like so many aspects of the ‘care’ family, you are also subjected to the postcode lottery when it comes to funding. Local authorities it seems are at liberty to interpret the rules on someone’s care needs differently, so while in one location you may be assessed and receive full funding for care, in a neighbouring authority the outcome may be very different.

Admittedly you can now argue that at least by April 2017 people won’t, in theory, have to sell their homes to pay for care, but for everyone currently within the social care system, and those about to enter it, that is fairly cold comfort. The social care system isn’t fixed by such a relatively narrow adjustment in the parameters, and many families still face uncertain futures.

Yes, you may get to keep the family home, but what you will go through to find care, fund it and live with the consequences of a system where standards are often not what they should be means that you are hardly likely to be celebrating from the rooftops. Ultimately social care needs an overhaul that transforms this fractured system and makes it equitable to healthcare. It requires joined-up thinking on a vast scale and a recognition that, with an ageing society, social care has to be amongst the very greatest priorities that politicians of all persuasions have.

Until next time...

You can follow me on Twitter: @bethyb1886

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