The failure of post-diagnosis support

It’s not often that the content of TV programmes stays with me, but the recent BBC ‘Hospital’ series, following the fortunes of patients and staff at Imperial Trust’s hospitals in London, and ‘Granddad, dementia and me’ that I wrote about last month, both fall into that category.

Documentaries can teach us a lot, and even allowing for the selective nature of TV editing and the luxury of being a passive viewer rather than a stressed subject with a camera pointing at you, I feel it’s important that the learning from these two programmes isn’t lost.

The third episode of ‘Hospital’ featured two gentlemen living with dementia. Firstly we were introduced to Carl:

Narrator: “75-year-old Carl has dementia. His family brought him to A&E after he became aggressive at home. Yesterday morning he walked out of the hospital and was missing for 13 hours. The police found him wandering the streets alone and brought him back to A&E.”

Dr Barbara Cleaver, Emergency Medicine Consultant: “Three people to look after him at the moment including security because he is in an unfamiliar environment, it’s noisy, it’s bright, there’s lots going on. I suspect that’s really playing into his underlying diagnosis and making things much worse for him.”

Narrator: “For his own safety, Carl is being held in room Q, the space reserved for psychiatric patients.”

My alternative commentary would be:

“Carl, a gentleman living with dementia, was missing his wife who for her own health needed a break from 24/7 unsupported caring. Carl, confused and frustrated that he couldn’t find his wife, lashed out at those around him through no fault of his own, and without the skills and support they needed, family members took Carl to a place they thought he would be safe. Carl, however, became disorientated in this alien environment and went to look for his wife for reassurance and familiarity.”

Later, we were introduced to Stanley:

Narrator: “85-year-old Stanley has vascular dementia. This is his 4th admission in three months. Around 25% medical patients treated annually by the Trust have dementia. They are accommodated in a specialist ward until their social care can be arranged.”

My alternative commentary would be:

“Stanley, poorly supported in the community, has had repeated inpatient stays. At present Stanley does not require acute medical treatment, and would undoubtedly have lived far better with his dementia had his family and social care been properly resourced to support Stanley from his diagnosis onwards.”

Were Carl and Stanley featured because their stories are somehow usual? Sadly I suspect quite the opposite. Carl and Stanley are the norm. The failure in post-diagnosis support for people living with dementia and their families is something I have written about countless times. Not only is it a disgrace that families end up in the situations faced by Carl and Stanley, it is also a complete false economy.

My dad was diagnosed 14 years ago. Since then we’ve had numerous dementia-related initiatives from different governments and significant investment into dementia education for healthcare professionals via Health Education England. And yet we still have:

·       People attending A&E because it’s the only place guaranteed to ‘do’ something for them when their family can’t cope with ‘aggression’ or the person has been found ‘wandering’ (not my choice of language)

·       People with dementia being placed in rooms intended for psychiatric patients (that are not remotely dementia friendly)

·       Medical and security staff seemingly untrained in supporting a person with dementia (and loads of stigmatizing language)

·       People remaining stuck in hospital because care packages are so difficult to arrange

·       Family carers at their wits end, wanting to care for their loved one but utterly unsupported

·       No signs of dementia friendly environments (in people's own homes or health/social care facilities)

 

·       No mention of some of the good work that has been done to help people in hospital, like 'This is me' and John's Campaign.

Add in what we saw in ‘Granddad, dementia and me’ where the gentleman featured who was living with dementia, Tom, was drugged and sectioned, and overall in both programmes precious little sign of any choice, control, empowerment, peer support, occupation or activity, life story work and other non-pharmacological treatments, positive behaviour support or, frankly, anything I would be proud of (beyond the outcome shown in Tom story) and I honestly question how much REAL progress has been made in the last 14 years.

By the time a person attends A&E, there have potentially been numerous red-flags that the family needed support. A dementia diagnosis in itself is the first of these. Once things get so out of control that the person is in hospital (which is one of the worst possible environments for a person with dementia - it will only increase the person's confusion and disorientation making them upset and/or angry), the effect on everyone involved isn’t favourable.

Some simple preventative advice and support could at best avoid, or at least significantly delay, a person ever ending up in a crisis situation. Why do we not educate families, at diagnosis and continually thereafter, about (in no particular order):

·       Making their home dementia friendly

·       Accessing peer support and empowerment

·       Occupation and activity - The myriad of different options to keep busy and how to access them

·       Collating and using life stories and other non-pharmacological therapies to support a person experiencing changed behaviour

·       Training: For the person with dementia and anyone in the family unit who wants it. Knowledge is power for many people. Knowing what is happening in the person’s brain, how those changes could affect the person and ways of providing optimal care and support (including self-care for the person with dementia)

·        Carer resilience - Ways of coping, identifying when you aren’t coping and sources of support when you aren’t coping (that actually exist and respond)

Instead, as episode three of ‘Hospital’ concluded, we learnt that Carl was now being cared for in an acute mental health unit and visited daily by his wife, and Stanley was settling in well to his care home. Would either of these gentlemen have chosen these two places of residence? I doubt it. And from the perspective of the tax payer, both are very expensive options (Stanley’s care home costs £1700 a week, plus because of his ‘complex needs’, an additional £2300 for one-to-one care. It is funded by NHS Continuing Healthcare. We never learn what Carl’s acute mental health bed costs).

Worst of all though, is the cost in personal anguish for these two gentleman and their families. We’ve only very briefly dipped into their stories, but they represent examples being replicated every day of how a diagnosis of dementia can needlessly lead to lives unravelling, all for the want of a holistic, long-term package of what is comparatively low-level post-diagnosis support.

 

Ask yourself: For a country aiming to be the best place in the world for people with dementia to live, is that the best we can do?

Until next time...

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Reframing the reporting about violent older people in hospitals

Recently the BBC ran a story that over 75's are responsible for 57% of physical assaults on NHS staff in hospitals. These assaults range from biting and pinching through to some of the most serious attacks that are recorded. In trying to explain why these incidents are happening, the stress and confusion that a hospital stay can cause were highlighted, and patients who are living with the effects of dementia were inevitably mentioned.

Sadly, I think many people reading the headline and acknowledging that dementia is mentioned will, yet again, assume that all people with dementia are violent. Little consideration will be given to how hospital environments contributed to the circumstances around these incidents, or indeed how the lack of comprehensive staff training or appropriate staffing numbers did likewise.

What also won't be examined is how many people were avoidably in hospital in the first place, or who had remained there for far too long when not clinically necessary because of failings in the availability, organisation or funding of social care places. It's just quick and simple to look at older people and say: "They are violent because they have dementia and are attacking the people trying to care for them."

What has to be understood is that people with all different dispositions and from all walks of life develop dementia. If you were an unpleasant person with a quick temper and a tendency to be violent prior to developing dementia, your dementia may or may not make those character traits more pronounced.

Likewise, for some people who were mild-mannered and never hurt anyone, the development of dementia can lead to symptoms such as paranoia, hallucinations, disorientation, confusion and anxiety that can result in a person lashing out without realising they are or without intending to. It is simply their reaction to what they are experiencing in that moment, allied with the circumstances (environment, staffing etc) that they are in the midst of.

Delirium and other mental health problems that either haven't been diagnosed or aren't being well treated can also contribute, not to mention the side-effects of a medication, poly-pharmacy or indeed something as simple as a urinary tract infection, being hungry or tired - do not underestimate the effect of sleep deprivation. A person may also feel angry, ashamed or undignified if they aren't being supported to wash, use the toilet or be mobile in the way they would want to be, resulting in feeling uncomfortable or becoming incontinent or immobile.

I am not in any way making excuses for violence against NHS staff, nor would I ever condone it, but before we brand older people as violent patients I think we need to understand how being a hospital patient can make you feel.

Last year I spent one night in hospital following the birth of our daughter. All the care I received was wonderful and the staff were very kind and helpful to me. But I didn't sleep a wink. Nor did I particularly like the food. I definitely wanted to lock the bathroom door when I went for a shower, and ideally would have preferred to keep the curtains around my bed closed, but because we all had to be in view of the staff so we could be monitored, that wasn't possible except for breastfeeding or getting dressed.

Granted, I had just had a baby and hormones were going wild, but fundamentally I was a knowledgeable, articulate person who could speak up for myself and wasn't in danger of having to stay in hospital any longer than was absolutely necessary. Yet I felt vulnerable. And if I can feel vulnerable, then I can only imagine how an older person, potentially with reduced communication abilities due to their health, might feel.

I have written before about how undiagnosed pain in a person with dementia can affect that person. I've also written about unmet needs being misunderstood as 'challenging behaviour' (a phrase I hate), and about the effects of illness, incontinence, hunger, dehydration and sleep problems. I've also addressed the shortcomings in hospital environments for older people in comparison to the environments we offer children.

All of these issues can easily converge and result in avoidable incidents. Aggression is so strongly linked to dementia that I meet people who are surprised if their loved one isn't aggressive. Yet there is so much that can be done through person-centred care, occupation, reablement/rehabilitative support and life-story work to support people with dementia to cope with their symptoms.

Whilst the BBC based their story on firm evidence, with figures obtained from NHS Protect (the organisation dealing with crime across the health service), I suspect that many people simply won't see beyond the statistics and examine the real issues, let alone tackle them. As a result fear of having contact with older people and people who have dementia proliferates. With such ostracisation comes isolation, and an even greater chance of people who are already feeling misunderstood reacting to that in ways that hurt them every bit as much as those trying to provide care and support for them.

Understanding about dementia has improved over the years, but it isn't where it needs to be to provide appropriate, individualised support for every person. Geriatrics isn't an area of medicine that is oversubscribed with our brightest and best professionals in the way paediatrics might be considered to be, and ageing within our society still isn't universally viewed with dignity, respect or compassion. Often older people's services are underfunded, stretched to capacity (and beyond) and seen as little more than a 'dumping ground' for people viewed as adult babies and stripped of their identity.

We are long overdue a complete re-evaluation of how we care for older people in hospital, including the need to even be in hospital to begin with, and an honest stock-take on how circumstances (many of which we can control) result in incidents that are then beyond anyone's control, least of all the patients at the centre of them. As in all areas of healthcare, prevention is always better than cure.

Until next time...

You can follow me on Twitter: @bethyb1886

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Sectioning people with dementia

Over the four years I’ve been writing this blog, I've met or been contacted by many families whose loved ones with dementia have been sectioned (detained in hospital without consent under the Mental Health Act). Sometimes the sectioning has occurred prior to a diagnosis of dementia, with the person then being diagnosed during their period of detention in a secure mental health hospital, and sometimes the sectioning has happened after a diagnosis and while they are living with a form of dementia.

Fortunately my father was never sectioned, which is just as well since I am opposed to it in relation to people with dementia in all but the most extreme circumstances. When I say extreme circumstances I'm talking about where a person with dementia is violently unwell and every effort has been made, prior to sectioning, to utilise every other avenue of care and support available.

As we know, people from all walks of life develop dementia, including people with long-term mental health disorders like schizophrenia and bipolar (manic-depression). The addition of a form of dementia for a person with a mental health disorder may result in a particular set of circumstances that makes sectioning necessary.

Equally, we know that dementia can itself cause significant changes in a person's personality, when they have no previous history of mental health illness. If those changes result in a person taking up a dangerous weapon and threatening themselves or others, again sectioning may be the only option.

These are, by any stretch of the imagination, extreme circumstances. They also affect a very, very small proportion of people with dementia. Yet figures published by the Health and Social Care Information Centre on 23rd October 2015, for the year 2014/15, showed that people aged 60 to 89 were most likely to be detained (Sectioned) under the Mental Health Act, with the number of detentions in each of these age groups (60-69, 70-79, 80-89 and 90 or over) all being over 43.0 per 100 people who spent time in hospital.

It would be a reasonable assumption, given that diagnosis of dementia is highest amongst older people, to suggest that dementia was a factor in many of these detentions. The question is, however, was sectioning the best form of care for these individuals? Most people with dementia live with progressive symptoms that cause them various challenges, and which the people around them need to respond to in ways that help to alleviate any distress they are feeling.

Sectioning is not a method of care that is likely to succeed in alleviating distress for the average person, or indeed for anyone bar those experiencing the most extreme symptoms and in the most extreme circumstances. It is most likely to result in a 'chemical cosh' being administered, and often that results in the long-term use of antipsychotic medication that is generally only removed if the person is fortunate enough to come into contact with clinicians and care professionals who have a more progressive outlook.

Fortunate is a word that I shouldn't need to use in relation to dementia care, but that is the harsh reality for some people who are living with dementia and being medicated to 'control' their 'behaviour'. Sectioning for a person with dementia, or someone who is suspected of having dementia, is a blunt tool that is still, in my opinion, used in circumstances that it should never be.

It can be used where healthcare professionals are wrongly assessing a situation, or don't have access to other methods of supporting a person with dementia - for example highly skilled social care that rehabilitates the person in a specialist care home environment that is designed for people with dementia and that provides person-centred, rehabilitative, therapeutic care.

It is sometimes used where a person with dementia is displaying 'challenging behaviour' (a term I dislike immensely) when in reality if their needs were met they wouldn't appear so distressed. In all bar the most extreme circumstances that I talk about above, a person with dementia lashing out isn't a sign that they need to be controlled by the means of a section if they won't 'co-operate' with the authorities.

Other circumstances I’ve heard of where a section has been used include carer burnout, where the family of the person have reached a complete breakdown. It’s pretty obvious, but if we supported family carers better to begin with such a circumstance wouldn’t develop. Another example can be extreme self-neglect, where a person living alone has neglected themselves to such an extent their life is in danger. Again, sectioning here is a bit like shutting the stable door after the horse has bolted. With an earlier, gentler intervention the situation never needs to deteriorate to a point where a section is being considered or used.

I'm not naïve; I know that not every person with dementia will avoid spending time in a 'secure unit', much as I would like them to. My father spent one 3 month spell in a 'secure unit' at our local hospital, was medicated and lost half of his body weight, and I don't doubt that some of the people locked in that unit had been sectioned. I just feel that sectioning is the most severe end of mental health care and should be reserved for the extreme circumstances that I detailed above, not as a short cut to ‘dealing’ with a person who has dementia and isn’t ‘conforming’ to what others expect of them.

I dislike immensely the idea of controlling people with dementia, and sectioning effectively does that. Moreover, I question the long-term good it is likely to do. Dependency on medication, the development of a whole host of other health issues as a result, severe deterioration of the person’s dementia, and complete dependency on the health and social care systems for the rest of their life. It’s not a pretty picture.

The solution? That sectioning is seen as being the extreme, last resort event that it should be, rather than a go-to ‘solution’ for ‘problematic cases’. Improvements in awareness and education around dementia, particularly the understanding around the physical changes in the person’s brain. And most importantly, the embracing of person-centred, rehabilitative, therapeutic support, delivered in an environment that enables rather than disables the person with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

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Fixing dementia care in hospitals

Standards of hospital care for people with dementia made the news last week, with an investigation by the Alzheimer's Society showing shocking variations in the quality of care being given, prompting the charity to launch their 'Fix Dementia Care' campaign.

Given that this time four years ago my father was still alive, and had been the recipient of some extremely variable hospital care in the years prior to 2012, it is a source of huge concern and sadness for me that many of the problems we experienced continue today.

The Freedom of Information requests that provided the substance for the Alzheimer's Society investigation highlighted that people with dementia were:

•    Falling while in hospital

•    Being discharged at night

•    Being marooned in hospital despite their medical treatment having finished 

Whilst my dad thankfully never had a fall whilst in hospital, being discharged at night was something he experienced on almost every inpatient stay. The reason given in his latter years with dementia when he was completely immobile was that he needed transportation via ambulance, and this was most easily accomplished at night when paramedics were less busy. Never mind what dad might have wanted of course.

 

I suspect the fact that he was being discharged to a nursing home, with staffing 24 hours a day, was also a somewhat convenient excuse. It was, however, a horrible experience for dad - these events often came in winter, and being moved out into the cold night air when he should have been tucked up in a warm bed was, in my view, a particularly sadistic form of 'care' that would leave him upset, disorientated and confused.

 

Being marooned in hospital was also a harsh reality for dad - at one point he spent three months in hospital (despite being medically fit for discharge) whilst funding was arranged for the care home placement that his doctors said he needed. During this time dad lost half of his body weight and the NHS picked up a huge bill for his care - a no-win situation for all concerned.

 

Alongside collecting data from Freedom of Information requests, the investigation by the Alzheimer's Society surveyed people affected by dementia. They found that 92% of those individuals felt that hospital environments were frightening and only 2% felt that all hospital staff understood their needs. 

 

Reading this led me to reflect on how my dad might have responded to his hospital experiences. I'm certain he found the hospital environment pretty unpleasant, from the noise, smells and routines of hospital life, to difficulties in finding facilities like the toilet and having opportunities for stimulation, occupation or activity during the long days as an inpatient. Only on one particularly 'fortunate' stay in hospital could I honestly say that dad had a better experience - he had his own room and staff found him a CD player. We brought in CD's for dad and his mood changed completely. Simple stuff, but so effective.

 

Sadly, however, meeting staff who understood dad's needs wasn't the norm. During the latter years of dad's dementia when he had dysphagia (swallowing problems), hospital staff refused to allow him to have food or to help him eat it, mistaking his hunger cries for pain and writing him up for morphine. This was a 'mistake' that could be interpreted as covertly putting him onto an end-of-life pathway by administering a drug that he didn't need and could have shortened his life with an inappropriate dosage.

 

Furthermore, this 'mistake' was only rectified because dad had a family visiting him for eight hours a day, speaking up for him, and bringing him food and drinks and helping him to consume them. We would also assist him with his personal care - without that help a man who liked to be clean shaven would have begun to grow a beard. But what happens to people without this family support? Do they get inappropriately medicated, starved, dehydrated or left dirty, uncomfortable and neglected? The variations exposed in the quality of hospital care suggests that this is likely to be a reality for some people with dementia who are inpatients today.

 

Despite the many difficulties we encountered with hospital care, however, I don't want to paint a completely bleak picture. There were good experiences, staff who genuinely cared and understood what dad needed, as well as providing great support for us. This was particularly evident in dad's last stay in hospital when he'd been rushed in with an aspiration pneumonia. 

 

His care was excellent, with the doctors treating him taking a lot of time and trouble during their interactions with dad and in their care for him, alongside explaining things to us and giving us time. Our decision to seek end of life care for dad from a care home wasn't because we were unhappy with his hospital care, but rather that the hospital couldn't offer the homely environment or privacy we felt he needed as his life approached its final stages. 

 

So, how do we ensure that hospital care is a high quality experience for every person with dementia? In my view providing comprehensive dementia education for all hospital staff (which Health Education England are tasked with delivering) and making environments more dementia friendly will only go so far.

 

The root of much of what is wrong stems from compartmentalisation. Hospitals work best when a person is admitted with one condition and treated for that condition. However, people with dementia often live with other conditions alongside their dementia, and are usually always admitted into general hospitals not because of their dementia but because of infections (mostly notably chest and urine infections), another long-term condition (like diabetes, heart disease or asthma) that hasn't been well managed, or because they've had a fall in their own home or in a care home.

 

This was never more evident for us than when dad needed hospital care during the last four years of his life when he had dysphagia. Treating a gentleman with dysphagia who also had dementia and all the challenges that brings around communication was an alien concept for most hospital staff, with approaches varying from the starvation I mentioned above, to trying to force a tube through his nose into his tummy rather than orally proving food (a tube he promptly pulled out), and providing ice cream (that quickly melted) as a suitable 'thickened' food for him (which in reality was as liquid as the water out of the tap).

 

What is needed to combat these issues is more holistic, joined up care that sees each person as a whole human being and treats them as such regardless of how many problems they have with their health and which of these problems has led them to be hospitalised. This approach needs to be combined with a comprehensive 24/7 service that enables individuals to access the care and support that they need when they need it. People can become unwell on any day and at any time - prompt treatment and, crucially, the availability of care and support when they are ready to leave hospital, is vital. 

 

Furthermore, if hospitals that are underperforming (as highlighted by the Alzheimer's Society Freedom of Information Requests) learnt from the hospitals who are providing some of the excellent care that the Alzheimer's Society found, these huge variations in care would become a thing of the past. It heartens me that some outstanding care does exist, but I remain saddened that so little seems to have improved since my dad was living with dementia. Clearly we still have a lot to learn.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Taking stock

Last weekend marked the 3^rd anniversary of my dad’s death. Alongside remembering that immensely sad day, it also prompted a lot of reflection, both personally about dad’s life and the gap he has left behind, but also more generally about how much has, or hasn’t, changed in those three years for people who are living with dementia, their families and the professionals charged with providing care and support.

My dad died just a month after David Cameron had launched the first ever ‘Prime Minister’s Challenge on Dementia’. It some ways it seemed very ironic – the country was finally waking up to dementia as dad was going to sleep for the last time. There was nothing in that Challenge that could possibly benefit dad, but I could see that it provided a focus that was badly needed for people who were newly diagnosed or who would go on to develop dementia in the future.

Since then there has been an increase in the diagnosis rate, an improvement in UK-wide awareness resulting in 1 million Dementia Friends, the creation of some ‘dementia friendly communities’, more dementia training for health and care staff, a renewed research effort, and an unprecedented global focus on dementia.

All that sounds very impressive, and undoubtedly it is an improvement on where we were 3 years ago, but I remain frustrated. Maybe I’m impatient, I know Rome wasn’t built in a day, and obviously care and support for people with dementia cannot be transformed overnight, but I remain unconvinced that everything that’s been done, great though it is, has really benefited people with dementia to the extent that the majority could say they are living well, or at least living better.

A major contributing factor to this situation are the cuts in social care, something I recently wrote about for Huffington Post. Most people who develop dementia have far more need for social care services than health services over the course of their dementia. Yes healthcare is important when diagnosing dementia, providing effective management of any long-term conditions that the person might have alongside their dementia (for example diabetes or high blood pressure), treating the common infections that people with dementia often develop as dementia progresses (urinary tract infections and pneumonias), and caring for people if they have a fall that requires hospital admission, but healthcare isn’t the bread and butter of dementia care.

Keeping people safe and well in their own homes for longer is the widely-agreed gold standard for dementia care. It’s what most people with dementia want and, frankly, are entitled to. It will always live in my memory that my dad was taken to hospital having collapsed from a larger stroke and never returned to his home. Not through his choice, or ours, but because he was deemed to have been too much of a risk to himself and others if he returned home. In hindsight, that could easily have been code for, “We don’t have any suitable accommodation that could help to keep him independent, nor can we provide the professional support he needs or support you as his family, therefore it’s just easier to keep him in hospital and then put him in a care home.”

In the 3 years since my dad died, or indeed the 12 years since he was moved into his first care home, I’m not convinced that any policy by any government of any political persuasion has actually ensured that if we lived that experience with my dad again now that the outcome would be any different. Daily life for people with dementia still, pretty much, amounts to muddling along in your own home (if you're 'allowed' to) - with some modifications if you’re fortunate enough to be helped with those, or indeed can afford them yourself – and being means tested for home care which might, in reality, amount to highly inadequate 15 minute visits that neither you as the person with dementia, or the care worker, actually feel achieve anything. The alternative is either hospital (free care) or a care home (means tested).

We know that people with dementia are ending up in our overcrowded A&E departments far too often, mostly because they haven’t been getting the social care that they need, and then proceeding to languish in hospital beds for far longer than they should be (much like my dad did, with one 3-month spell in hospital seeing him lose half his body weight as he was drugged with antipsychotics) all because of endless assessments and wrangles over funding.

We also know that GP’s are under pressure to diagnose increasing numbers of people with dementia, often referring them into memory clinics with long waiting lists. There is precious little support for people who are newly diagnosed, with too few specialist dementia nurses and then, of course, there are families, many of whom want to support their loved ones but are given scant help with this and a paltry carers allowance to live on.

Meanwhile, I’m not convinced the Care Act, that great bastion of apparent overhaul in caring for and supporting people, will provide much tangible assistance. Yes, there are entitlements to assessments, Councils have to help families by providing information, and next year sees the cap on care costs come into force, but for many families this means-tested social care system will still leave them with complex financial issues to overcome.

Add all this up and it amounts to a not particularly impressive stock take. I still don’t think most people with dementia feel listened to, nor do their families. A lot of what’s been achieved, it could be argued, is fancy window dressing – things that look good and are relatively easy to succeed with, whilst side-lining the really big issues about how we provide holistic, person-centred support for each individual living with dementia, preserve their independence for the longest possible time, give carers and families the help they require to continue to care and not breakdown, and properly provide and fund the social care people with dementia need.

I hope that dementia remains a priority for the next government, but even more than that, I hope politicians start to get to grips with the issues that are REALLY challenging for people with dementia and their families.

Until next time...

You can follow me on Twitter: @bethyb1886

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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...

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