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
Given that healthcare was, for a very long time, a closed
shop in terms of opportunities for patient input and examples of the NHS listening
to the lived experience, we can but applaud initiatives like NHS Change Day and
NHS Citizen. I know a lot of people are cynical about improvement drives and
headline-grabbing enterprises, but if there is an opportunity to put the needs
of people with dementia and their carers in the spotlight then I am willing to
try it.
For those of you not familiar with NHS Change Day, we had
the first example of it last year and it received significant acclaim. It’s not
just for NHS employees, but for anyone with an interest, be it personal or
professional, in UK healthcare. The strapline of the campaign is simple: ‘Do
something better together’. Your pledge can be individual or organisational or
indeed anywhere in between. In fact there are very few ‘rules’ – the concept is
about gathering pledges that improve healthcare. For this year's UK Change Day you can make a pledge until 31 March 2014.
My pledge for NHS Change Day
2014 is as follows:
“I pledge to help everyone within health and social care
increase their understanding of dementia by sharing my experiences and
knowledge.”
Absorbing the unique experiences of people who are living
with dementia, and those who love and care for them, is vital to lift dementia
out of the shadows of stigma and improve care and support for all.
Make YOUR pledge to find 2 minutes to watch the film I made
for the G8 Dementia Summit http://youtu.be/hT7HtCvwmq4
which highlights my experiences as a carer for my father who lived with
vascular dementia for 19 years.
Find out more about my work on my website: http://www.bethbritton.com/.
You can support my pledge here.
NHS Citizen is a far newer concept, and is about gathering
ideas that can be fed into NHS policy making. The most popular ideas will be put
forward for discussion with the NHS board at the Assembly Meeting. Again there are very few ‘rules’ –
it’s about capturing your idea succinctly and then selling it to voters (voters
being anyone who registers with the site).
My NHS Citizen idea
is as follows:
Improved support for people with dementia and their carers.
People who are living with dementia and their carers come
into contact with many different areas of the NHS, from GP and community
services, to A&E, inpatient and palliative care services.
Dementia rarely exists in isolation, and many people who
develop it have, or go on to develop, other long-term conditions that require
specialist care. Over time they may also need emergency treatment for falls or
infections.
Improved support can benefit everyone, people with dementia,
carers and professionals.
Dementia is YOUR business!
If you are a Doctor, Nurse, HCA, Physio, OT, Speech and
Language Therapist, Chiropodist, Audiologist, Optometrist, Dentist, Dietician,
Pharmacist or indeed any healthcare professional who provides support for
adults (and particularly older adults) you will be meeting and offering
treatment to people with dementia.
Dementia is YOUR business and I believe that you deserve the
training and insight you need to provide the level of care that your patients
deserve and that you would want to provide.
You can support my idea here.
I won't deny that there is a similarity between the themes
of my NHS Change Day pledge and my NHS Citizen idea. Why? Because I believe
that both opportunities to highlight the needs of people with dementia and
their carers require consistent messages about listening, understanding,
awareness raising, training and insight.
What I’m proposing isn’t especially radical, and I’m not
suggesting that in some areas of the UK it isn’t already happening. Dementia
has had significant focus since the Prime Minister’s Dementia Challenge was launched;
indeed those advocating for people living with other diseases and conditions may well wish
that they enjoyed a similar spotlight. Being in everyone’s minds, however,
doesn’t guarantee progress.
I hear every day from people who are struggling with
dementia in their family. I also hear from professionals who are facing their
own struggles with an education system that doesn’t prepare them for
appropriately supporting people with dementia and their carers, and who must
work in systems and environments that are not remotely dementia friendly.
Whether NHS Change Day and NHS Citizen will make a real
difference to the lives of people with dementia and their carers is obviously
debateable, and potentially nothing will change in the long-term, but I want to
be positive and believe that together we really can do something better. My
pledge and idea aren’t one-offs, they represent everything my work is about. I
believe passionately that change and improvement are possible. Most significantly
of all, though, I believe that the vast majority of people who could deliver
those changes and improvements want to do so.
Until next time...
