Terms of endearment – The ‘darling’ debate

A couple of months ago the Care Quality Commission (CQC) released a report detailing an inspection of a care home in Harrogate where the language used by staff when communicating with residents came under the spotlight. Care home staff had been using terms such as “sweetie”, “darling”, “handsome” and “love”, and the inspection team were concerned about these being “demeaning and patronising”.

Since then plenty of people have weighed in with their opinion on the use of terms of endearment in social care settings, and I’ve been fascinated at how polarised viewpoints have been on this issue. Some people feel such terms introduce welcome informality and infer kindness and compassion, whilst others have found them offensive and disrespectful.

Given that my dad spent the last nine years of his life in three different care homes, he and us as his family gathered plenty of experience in the different ways staff addressed dad. These ranged from the formal ‘Mr Britton’ and the less formal use of his forename, all the way through to calling him “uncle”, which was intended by staff as a term of endearment.

I can’t say what dad thought of the different ways in which he was addressed, since he never spoke to me about them or reacted differently depending on how he was addressed. I personally never had a particular issue with any of the ways in which he was addressed, which starkly contrasts with other usage of language that I really did have a massive problem with.

The term “change your nappy” when referring to changing dad’s incontinence pad was amongst the phrases I loathed the most, and something I touched on in my blog post R-E-S-P-E-C-T. This to me was a grossly inappropriate use of language, and interestingly given the largely overseas workforce was a phrase actually used by an English care worker, so it certainly wasn’t a case of inadvertently misunderstanding the meaning.

Ultimately of course, all use of language comes down to what the person being spoken to feels comfortable with. I can’t imagine many older people in a care home would want their incontinence pad to be described as a nappy, but I guess it’s possible that some people MIGHT find that phrase familiar to them and be comfortable with it. I just felt my dad would be extremely offended and it was entirely inappropriate for him.

The same of course is true with terms of endearment, and this was the point so clearly illustrated in the fallout from the CQC report. Whatever someone prefers to be called is what they should be called - individual preference should override any viewpoints staff or indeed inspectors have. But the key point here is choice. 

It’s vital to prominently document how someone likes to be addressed from the moment they enter any type of residential care. This should be known by all staff, including any agency staff from the beginning of their shift, and we should never make assumptions. Shortening forenames isn’t something everyone will like – a gentleman called Jonathan might not want to be called John. The formality of calling someone Mr or Mrs may make them feel uncomfortable… or it may be exactly how they want and expect to be addressed. A person may prefer the use of a middle name, or even prefer a name that isn’t associated with their given name at all.

Then of course there is this tricky area of terms of endearment. In some parts of the UK, especially more northern parts, terms of endearment are commonplace amongst the population and are likely to be heard everywhere from shops to hospitals, with many people finding them reassuring and comforting, like the familiar taste of regional foods or beverages.

But they will never be to everyone’s liking. I’ve been called “love” and “darling” before and not minded, but I wouldn’t appreciate being called “duck” for example. Care providers, no matter how heavy their workload, have to ensure that all individual preferences are catered for and not strayed from, no matter how easy it might be for staff members to revert to what is most familiar to them. In the end, it’s all about person-centred care and that begins from the very first interaction.

Of course staff will never get it right all of the time, that’s human nature and a rare slip of the tongue is forgivable, but it is perhaps worth reflecting on the following. Many people who move into residential care feel they lose a huge amount when they make that move, but to lose your right to be addressed as you would want to be is something no one should ever lose.

Until next time...

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Special Measures – My view

Last week's announcement that adult social care providers who deliver sub-standard care face being put into Special Measures from April 2015 proved to be quite a momentous event for me. I was involved in the announcement (details here), and it understandably produced a lot of mixed reaction.

I'd like to use this blog post to clarify some of my thoughts around this issue in more detail. The singularly most important thing to stress in this debate is that the majority of care is good care. I have written extensively about the amazing care my father received from many dedicated and caring professionals (for examples see: 'Continuity is key', 'Sense and simplicity', 'End-of-life care - A very personal story') some of whom are still good friends of my family. The coverage I have given to the positive aspects of my father's care on D4Dementia and elsewhere far outweighs coverage of our negative experiences.

It is widely known that adult social care has a poor reputation, badly tainted by the actions and culture of a minority whose conduct hits the headlines in a way that the many positive stories of wonderful care never do. Yet, as I said in my statement in the press briefing for the Special Measures announcement, "Most care is excellent. Most care workers are dedicated, and often undervalued, professionals". 

I am the first to acknowledge that there are huge issues in the recruitment and retention of good care workers (see this blog post), and that the terms and conditions that many work under fall well short of the professional standing and associated remuneration that I would like to see given to care work. But none of this is an excuse for poor care. Many good care workers have terms and conditions of employment that do not fairly reflect the work that they do and yet they still deliver great care, and of course the many volunteers who help to prop up services earn nothing at all and often make an amazing contribution to the lives of vulnerable adults. 

None of that in any way belittles the issues around employment of care workers, but aligning debates about employment with debates around poor care almost gives the impression that unfair employment conditions are an excuse for poor care, when there can never be an excuse for poor care. I know for a fact that the many wonderful people who cared for my dad weren't paid enough, or valued by their employers as they should have been (one of my dad's care homes had 4 different owners in the time he lived there), but they were fundamentally dedicated and caring people who did amazing work in often very difficult circumstances.  

In terms of the proposals about Special Measures, many people have asked me what will be the difference between Special Measures and the powers CQC have now to issue warning notices and if necessary take action to remove the registration of a provider and close a service. To clarify, CQC have been asked to develop a Special Measures regime for adult social care by the Secretary of State. That process will begin in autumn 2014 and be done via the Adult Social Care Co-Production group that I am a member of. At present, the in depth details of what Special Measures in adult social care will look like are still to be decided on.

In the meantime, I have my own personal 'wish list' that draws on the experience of poor care that we had in the last 6 months of my dad's life. This list includes:

1) Timely intervention - Often vulnerable people don't have weeks and months to wait for improvements to happen. If the 'care' they are receiving is acutely failing, it could cause serious injury or premature death.

2) Targeted intervention - A Special Measures style intervention should, in my view, directly address particular concerns by signposting to resources that can make an immediate difference to the lives of the people receiving a care service. There are loads of great resources available, and accessing them doesn’t necessarily require a provider to spend a lot of money. We are very fortunate in the UK to have The Social Care Institute for Excellence and Skills for Care alongside many other innovative and highly effective national and local organisations, businesses, charities and community interest companies that can provide guidance, practical resources and be catalysts for change. Indeed, independent of regulation some care providers work with me in a consultancy capacity to evaluate, improve or change aspects of their service, so there are many proactive and forward-thinking providers out there already.

3) Sensitive intervention - It is vital to be mindful that a care home is the home of the people that live there. In my view Special Measures must do everything possible to turn a service around in a timely and targeted way without the people that live there having to find a new care home, unless of course those people want to find new care home. Having to move can be very distressing, and again possibly hasten a person's death is they are particularly frail or have advanced dementia.

4) Public accountability - I hope that, like with hospitals, Special Measures will provide clarity for families about the status of a service. Families aren't stupid - they know when care isn't good enough, but generally they are often too afraid to speak up. They need to see CQC taking firm but fair action that addresses shortcomings if a service isn’t safe, caring, effective, responsive and well-led. As part of that process, I would like to see all providers actively working with families in a renewed effort towards teamwork and inclusivity in the day-to-day life of a care home.

So how are care providers likely to react? In my view, if you are a good care provider you have nothing to fear. If you are a provider who is found to have a service that is delivering sub-standard care but you are prepared to work hard on turning that service around you have nothing to fear. If, however, you are a provider of a sub-standard care service and you are complacent and disinterested in improvement then you are a danger to the people who rely on you (people receiving your care, their families and any good care workers that you employ), and anyone who may come into contact with your service in the future. It is then the role of CQC to take action and it would be indefensible if they didn't.

There is some disquiet that putting a service into Special Measures will mean that the provider cannot maintain their revenue stream if one of the conditions of Special Measures is to prevent the provider from having new admissions to their care home or new clients to their homecare service. This, however, isn't new - there was a period when one of my dad's care homes was closed to new admissions due to safeguarding. In my view this actually helps providers; it enables them to focus on their service and the improvements that are needed without the added responsibility of caring for more people, and it safeguards the public from anyone else coming to harm whilst the service implements improvements.

Is privatising care the reason poor care exists? In my view poor care can occur whether the provider is making a profit, is a not-for-profit or indeed is a public sector organisation. The causes of poor care practices are, more often than not, centred around the culture of an organisation, its leadership and in some cases individual staff teams or members. Can hospital-style Special Measures work in social care? No, because clearly there are significant differences between hospitals and social care, but there are certainly some positive examples of hospitals turning themselves around as a result of being placed into Special Measures.

Can CQC be trusted with this? As is well known, CQC didn't provide us as a family with the support we needed when my father was alive, but arguing about the regulator isn't going to change the fact that they are still the regulator. Working with them to improve social care, celebrating the outstanding examples of care and uncovering inadequate care is the only option in terms of the regulation of UK health and social care services. As I have said in the past, inspection - however rigorous and informed with intelligent monitoring - will still only be a snapshot of a service. Whistleblowing is as vital now as it has ever been, whether you are a person receiving care, a family member or a social care worker.

I believe as a country we owe it to every person who needs social care and their family to ensure that care is the very best it can be. I will always champion that regardless of who is in government and who the regulator is. I feel passionately that we must be the change we want to see, and constantly strive for improvement and the eradication of poor practice.

Until next time...

You can follow me on Twitter: @bethyb1886

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“Will you help me, please?”

These are the heart-breaking words of 98-year old Yvonne Grant, calling for someone to help her to the toilet in secret filming captured by her family and aired by Panorama ‘Behind Closed Doors: Elderly Care Exposed’.

In this hour-long programme, viewers are shown older people in care homes being neglected and abused, call bells being ignored, verbal and physical assaults, and staff who are either completely unsuitable for the job they are doing or, as a few glimpses of footage show, some very good staff who - whilst overstretched - are caring people who want to do their best for the frail older people who are depending on them.

For me, having been by my father's side through 9 years in social care (punctuated by spells in hospital), I saw things then that didn't represent good care on more than one occasion, and as I have already written about, I had cause to call in CQC when my father's care deteriorated (‘From care to catastrophe’). Whilst I have never seen the type of physical abuse depicted in the programme, it's important to remember that many aspects of poor care aren't any less abusive just because they don't involve physical violence. 

You will struggle to find anything in this programme that represents what most people would want care for their loved one to look like, defined in the current overhaul of CQC’s inspection process as ‘The mum test’ – namely asking if a provider is delivering care good enough for our mums and dads, grans and granddads, siblings, cousins and wider network of loved ones. New key-lines of enquiry for CQC inspectors will ask if a service is safe, caring, effective, responsive and well-led – everything that is absent in this footage.

In the consultancy work I do now I've seen practice that wouldn't pass the 'mum test' for me. Providers don't always get it right, sometimes through failings they want to learn from and make long-lasting improvements because of. However in other cases, as we heard in the Panorama programme, there are some providers who are ‘content’ to bump along the bottom, treading the fine line of previous inspection regimes that defined a provider as being either compliant or non-compliant.

As members of the public we expect that regulation of care providers will root out all poor practice, but as the Panorama programme clearly showed, regulation alone isn't enough. From my personal perspective, it certainly wasn’t enough to prevent my father from aspirating on his own vomit five times and being admitted to hospital with aspiration pneumonia and pressure sores.

The overhaul of the CQC inspection process that is currently out for consultation  – including looking at the issue of cameras in care homes -  gives me some hope for the future, but however robust inspection becomes, and however much quality and innovation is made an intrinsic part of the regulator's role, CQC alone cannot ensure that every service is good enough for our loved ones.

Inspection is but a snapshot of a service. Done well by a team that includes a well-trained inspector, an expert by experience and (where necessary) a specialist expert (for example in dementia, palliative care or pharmacy), against key lines of enquiry that focus on what good should look like, it will expose most services that require improvement or are inadequate.

For me, however, the real key to unearthing insidious poor practice (and equally excellent practice) comes from intelligent monitoring. In other words, whistleblowing staff, relatives and visitors, including visiting health and social care professionals - the people who see what happens on all the days of the year when the CQC team aren't present. 

In an ideal world we would all be the eyes and ears of CQC, but in practice whistleblowing has become a concept that instils fear whenever someone considers it, as I described in ‘Putting your head above the parapet’. Fear in professionals that they will be ostracised and deemed unemployable, fear in relatives that their loved one will be victimised because they have spoken out, and fear from those receiving care that they will be silently killed for complaining.

In that climate, poor care and abusive practices can proliferate and this must change. We need the culture of whistleblowing to be encouraged and respected. Confidentiality, alongside a proper weighting of evidence - rather than a previous attitude of ignoring what hasn't been corroborated over a long period of time by numerous others (who may be too frightened to speak out) - is vital.

There are other suggestions too. One of the most innovative ideas I’ve read is that care homes should have boards of governors in the way that schools do. Private sector care providers are offering a service in the same way that private schools are, and both exists to nurture vulnerable members of society, just at different ends of the age range. Governors that are drawn from a cross-section that includes representatives of those receiving care, relatives, friends, health and social care professionals and wider community leaders could rejuvenate every aspect of social care.

It cannot be the case that we rely on TV programmes to occasionally shine a light onto the plight of a minority who receive a service that is so short of being caring it shocks the nation. Families resorting to installing cameras to prove what is happening to their loved ones, and then watching in tears as the full extent of their suffering is revealed, proves that we woefully short of a culture of open accountability.

As a nation we have to demand better for our loved ones. As professionals we have to find a way to deliver better care. And as the majority of good social care providers would say to the minority who are failing: If you can't deliver a service that is safe, caring, effective, responsive and well-led then go into another sector, far away from the care of vulnerable people. 

As Yvonne said: “Will you help me, please?”

Until next time...

You can follow me on Twitter: @bethyb1886

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Caught on camera

CQC’s launch of their document ‘A fresh start for the regulation and inspection of adult social care’ has created a barrage of debate. Amongst the raft of changes and proposals to overhaul the inspection and regulation of care services for adults are some ideas that CQC want to discuss with the public, including the “Potential use of mystery shoppers and hidden cameras to monitor care”. Concerns have been raised about whether hidden cameras are ethical, if their use would be legal, and whether we even need them.

To begin to illustrate my views, I want to pose a scenario to you:

A man of 84 is living in a care home. He has advanced dementia, and requires all of his needs to be met by a skilled team of care professionals, assisted by his family. His family are not present 24 hours a day, so much of his care is provided by different care professionals. His family become concerned for his welfare when the ownership, management and staffing of the home changes . The home is frequently short-staffed and running on agency staff (who don’t even know who each resident is). The man becomes more frail, has more infections, begins to develop pressure sores and is being kept in bed more than normal. This is also true of other residents. The few remaining regular staff, including the man’s keyworker, express concerns about the way that they are being instructed to care for the man and how new staff are caring for him. The man is eventually admitted to hospital with pneumonia after aspirating on his own vomit five times. The hospital are so concerned about the condition of the man that they make him the subject of a safeguarding order. He never fully recovers from the pneumonia and passes away four weeks later, less than two weeks after his 85th birthday.

That man was my dad.

I repeatedly raised concerns about my father’s care with the care provider after the changes in ownership, management and staff. Eventually I had to resort to phoning CQC three times before they would take my complaint seriously. They inspected, but then took two months to produce a report. It was too late for my dad. His keyworker, a wonderful care professional who had diligently looked after my father for eight years, was as heartbroken by the way in which the care deteriorated as we were. Indeed that care professional, and his colleagues who had  assisted with looking after my dad for many years, found alternative employment and left the home: they simply could not stand to deliver care in the way that the management wanted it delivered.

On the night my father aspirated on his own vomit, we believe he was put to bed too early and given a milky drink in bed without being properly upright – all of those actions going directly against our wishes and the recommended advice for his care from doctors (the management made their own care plans without our consent). The doctors treating my father at the hospital didn’t believe he would pull through the night – aspirating on your own vomit is a bit like pouring acid into your lungs they said. Imagine how that felt.

We will never really know what happened that night, because despite asking the staff on duty, no one could explain. I dearly wish we had had a hidden camera in my father’s room that night, and indeed in the months leading up to that fatal incident. I know it would have proven the poor care my father was subjected to, and it would also have proven some of the good care people like his keyworker provided, often fighting against the management to do what was best for my dad.

Do I think cameras should be routinely installed into care homes? No I don’t. But potentially they do have a value in certain specific circumstances when there are grave concerns for a person’s welfare that only indisputable footage can prove. Currently surveillance is limited to the few families who have installed hidden cameras to prove that their relative is being abused, or places like Winterbourne View that needed Panorama cameras to expose the appalling treatment being meted out.

It must be remembered that some people don’t have a family to monitor their care. People with dementia, learning disabilities and other conditions cannot always articulate what is happening to them. Proving how injuries are sustained can sometimes be one person’s word against another’s. Poor care many only really come to light following a crisis point when a person is admitted to hospital in a condition that no amount of treatment can cure, or it many only become evident on investigation after death.

I want to pose another scenario to you:

A lady living with dementia in a care home, almost completely deaf and blind, begins to lose a dramatic amount of weight and is always thirsty when her family visit. The family suspect she isn’t being fed enough. They often find drinks that have been left out of her reach, and suspect that staff aren’t communicating with her appropriately. She eventually passes away at a weight that would be considered severely malnourished.

I knew this lady, and her family agonised over what happened to her – a camera would have given them answers, and potentially ensured she received better care.

Dignity, privacy and respect are all vital in any care setting, but there is nothing dignified or respectful about elder abuse or premature death from negligence that hides behind a veil of privacy. Such practices – that are in the minority - must be rooted out: they taint the vast majority of wonderful care that is being provided. A hidden camera can prove or disprove allegations and suspicions, and it could potentially work in many different ways. For example: It can prove that a care worker is acting inappropriately. It can prove when a provider is negligent in not giving their staff the equipment or training needed to perform a task or to keep a person safe. It can assist a care provider to root out poor practice that they suspect an individual employee of but need to prove. It can show if a person receiving care has had a harmless accident or is self-harming. It can provide evidence if a family are being abusive, either towards their own relative or towards staff (yes, it does happen).

Cameras could also be helpful in certain specific circumstances in people’s own homes, where they are receiving home care or care from a family member, friend or neighbour.

Consider this scenario:

Two elderly sisters live alone at home. A neighbour ‘befriends’ them. That neighbour manages to persuade them to sign a Power of Attorney and then gets control of all of their money. She tells them that they are now so poor they cannot afford heating. Professional carers often come in to find these ladies cold and hungry. One of the sisters develops hyperthermia. Eventually they end up in care, virtually penniless.

I knew these ladies – could a camera have helped them, and brought the person who prayed on them to justice?

Clearly there are huge ethical, moral and legal issues with the use of cameras in any setting, particularly if those cameras are hidden. Whether a policy allowing the use of hidden cameras in adult social care will ever be created and implemented isn’t yet decided – this is merely an idea that has been put into the public domain for debate. Personally I welcome healthy discussion on any proposal that could help to safeguard our most vulnerable people and stamp out elder abuse. I don’t believe sensitive use of such cameras in a minority of isolated cases would undermine the morale of social care professionals. In my mind, those who are providing good care have nothing to fear.

Until next time...

You can follow me on Twitter: @bethyb1886

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Why, oh why, oh why?

Incensed. Appalled. Outraged. Indeed there are a plethora of words to describe how I felt on hearing reports of a rise in suspected cases of elder abuse in England, but I’m not sure any of them accurately do my feelings justice.

What I cannot, have never been able to, and will never be able to comprehend is what motivates anyone to commit such abuse. Of course you could equally argue the case for the abuse of children, women, the disabled and indeed any person, or any animal, in a vulnerable position – it is never, ever justifiable, and the perpetrators should be held to account for their actions.

Why we have a rise in possible cases of elder abuse is, I fear, about more than just a growing older population or the opportunism some may see in that. I would suggest it has as much to do with the societal approach to ageing, mostly because I see and hear so much in everyday practice that constitutes the foundations of elder abuse. The demeaning of older people, the view that they are a drain on resources, complaints that they are a sector of society that doesn’t ‘contribute’ and that they are simply ‘in the way’.

One of the great arguments against legalising euthanasia is the concern that it would lead to many older people being pressured into ending their lives simply because they are at a stage of life when they need more from ‘the system’ than they are currently putting in. This of course conveniently ignores all the years they did ‘put in’, worked hard and contributed to the defence and prosperity of the nation, not to mention parenting and grand-parenting the younger generations we have now.

In our desire to measure so much in monetary terms, we lose sight of the priceless contribution that our older generations bring to their communities – their wisdom, their experiences, their link to our past, their guidance in the present, and their observations on our future. It may be really simple stuff, but it is incredibly important if we are ever to regain the community spirit that we’ve lost, and to teach our younger generations about humility and respect.

I was bought up within an environment that steadfastly instilled in me respect for my elders. Perhaps this was because my parents were older when they had me (my mum was 40), or because we had strong ties with older relatives throughout my childhood (including the great sadness of my grandmother passing away). Or maybe it’s a simple case of engendering a system of values – to speak when you are spoken to and for children to be seen and not heard (my dad’s favourite).

It probably sounds really old-fashioned, but it worked. Knowing your place as a child within your family means that as an adult you have a grounding that no amount of money can buy. I’m a staunch defender of our elders not because my dad lived with dementia for 19 years and became one of those very vulnerable older people, but because my mum and dad taught me about the value of generations and the place of each generation within the overall tapestry of life.

We will all be old one day if good health prevails upon us, and how do we hope to be treated? As a piece of dirt on a younger person’s shoe, or as a valued and respected member of the community? Moreover, for anyone with children, how do you want them to be treated when they get older? Would you be prepared to tolerate them being neglected or physically or mentally abused simple because they cannot fight back?

Ultimately the point about elder abuse is that it could happen to any of us. It isn’t something that only happens to other people. None of us know what care and support needs we may have as we grow older. We may hope to never rely on other people, either within our own family or professionals who are otherwise strangers, but we just don’t know.

Amongst the majority of wonderful care that my father received, he was subjected to treatment which in my mind was undoubtedly abusive, a view backed up by doctors when he was admitted to hospital with aspiration pneumonia (he had aspirated on his own vomit five times) and pressure sores. My dad became the subject of a safeguarding order, and that was despite having an actively involved family who tried to stop the dreadful treatment meted out to him. He never fully recovered and passed away four weeks later.

We know from the scandals at Mid Staffs and other hospital Trusts that abuse isn’t just confined to care homes, and the exposé TV documentaries on bad care only highlight certain individual organisations.  I don’t believe that the cases of abuse in people’s own homes that hit the headlines tell the whole story either. My greatest fear is the abuse we don’t hear about; the people who are in pain, soiled, sworn at, neglected or isolated. The people who are fearful of having enough money to pay their bills because someone has conned them. The people who are being told they are worthless and should just die.

Every single one of those people needs us. They need strong voices to highlight their plight, a person to talk to who will help them, effective whistleblowing procedures, a robust system of regulation from CQC to ensure that they are safe, well cared for and happy, and from everyone who lives in their community, respect. It costs nothing, but if it was engendered within all of us, elder abuse and indeed all forms of abuse would never exist.

Until next time...

You can follow me on Twitter: @bethyb1886

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UK readers can get more information on Elder Abuse from Action on Elder Abuse: http://www.elderabuse.org.uk/ or call the Age UK helpline: 0800 169 6565

Putting your head above the parapet

Anyone who knows me will confirm that I am not afraid to speak up, firmly but fairly, if something is wrong. With TV programmes and magazines extolling the rights of the consumer, complaining about goods and services is something most people will do without hesitation. When it comes to complaints about issues of health and social care, however, a chilling fear of the malevolent intentions others may have as a result of what you are going to do or say can put you in that most impossible of positions – do you speak up, and if you do, will there be unexpected consequences?

Over the course of my father’s 19 years with vascular dementia there were numerous occasions when things went wrong, particularly in care homes. Small issues like missing clothes, giving the wrong food or drinks, or not showering him enough were easy to tackle with staff who, whilst often overworked, were generally conscientious and wanted to put things right, but much bigger problems proved far more difficult to deal with.

As a loving, caring family, you want the best for your relative, wherever they are and whoever is looking after them. People with advanced dementia cannot speak up for themselves, and whether your battles are with care home management, hospitals, care agencies, PCT’s or social services, it can easily become an all-consuming, personal quest for the care, justice and fairness your loved one deserves.

Generally most official complaints procedures would like you to start and end your complaint with the lowest level manager that they can delegate your issue to. Often, however, this person will not have the authority to overturn decisions or will try and wrap your problems in red tape, with protocols, procedures and lengthy time scales. Going higher up the management structure will often result in more bureaucracy, if indeed you can ever actually speak to and develop an understanding with someone who can make the changes you want.

Complains in health and social care are generally very personal, yet you are often left dealing with people who have no personal feeling for the subject in question and therefore no understanding of where you are coming from. Frustrated and exhausted, do you resort to more public methods to fix the broken part of the system that you are in?

Many people have asked me why I never started D4Dementia sooner – 19 years, they say, is a long time for my father to have had dementia, and sharing those experiences along the way could have helped and supported many others on their own dementia journey at that time. Whilst this is very true, and our story has many positive aspects, starting the work I am doing now when my father was still alive would have also meant publically exposing when things went wrong, a concept that filled me with a genuine fear that my father’s care would suffer.

The care system can be very political, secretive and unnerving, and when dad’s care deteriorated  to a point where he was suffering (as I wrote about here), whilst I was tempted to make his case an example to the UK, at the same time I felt the price he may pay would be unbearable. As it was, involving senior management from the care provider, and eventually CQC and other agencies in the months prior to my father’s death, left us ostracised, isolated and the subject of lies and rumours from the home management. Furthermore, given the circumstances in which the pneumonia that killed my father manifested itself, I will now always wonder if he was targeted as a resident with a family that they simply wanted to get rid of.

There is a pervasive fear amongst families of older people who cannot speak up, or indeed amongst the elderly who could speak up themselves but live in fear of doing so, that the lives of the older generation are considered to be worth less than their younger counterparts. Many elderly people often feel very vulnerable, alone and frightened, languishing in hospital beds or in care homes with problems that they would like to voice but fears that their care will suffer if they ‘get someone into trouble’.

Anonymous whistle blowing is great in theory, but often the channels for doing this are unknown or not trusted, and as a result underused. Regulatory bodies that are designed to protect vulnerable people, like CQC, can be unapproachable and unhelpful, and as we all know, sometimes it even takes undercover reporters to expose bad care.

When you put your head above the parapet you should be assured of knowing that you will be listened to and action taken swiftly and fairly. Driving up standards only happens by finding and eradicating instances where people are at risk of harm, abuse or even death. Complaining about bad practices, decisions, poor care or management should be something people feel that they can do freely and in confidence. Sadly many people do not, and if my father was still alive I would not be sharing our experiences with you now, so there is still much to learn and change about the way the UK approaches complaints about the most important issues of all, those of life and death.

Until next time...

You can follow me on Twitter: @bethyb1886

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From care to catastrophe

Back at the start of D4Dementia I wrote about the importance of continuity of care for people with dementia. It cannot be over-emphasised just how beneficial this is, not only to the person living with dementia, but also their families and indeed people working as carers. The chance to form a bond with a person is what can give the greatest job satisfaction and leads, in turn, to the most compassionate and personalised care.

We were particularly lucky that my father formed a bond with a carer that lasted from the day they met to the day dad died – indeed this man even came to dad’s funeral. In the almost eight years in between, this carer brought such joy to my father’s life that it could honestly be said that dad was often more pleased to see him than he was any of us.

As a family we valued this carer’s input into dad’s life higher than any other professional we worked with, so imagine our heartbreak when a change in ownership and management at dad’s nursing home resulted in wholesale changes to the care structure. Suddenly wonderful staff who had delivered an excellent CQC report just a few months previously were now leaving, bullied, ostracised and driven away, initially we suspected for racial reasons before it became clear that whatever your skin colour or race, if you were well-liked you were not wanted.

What you soon discover as a relative, when you try to halt this tide of change, is that A) private companies can run care homes as a dictatorship rather than a democracy so long as they can keep the inspectorate happy, and B) that as a relative you have no say over what happens, CQC are reluctant to support you, and the only real option you have is to move your relative to another home.

In this case, having no say included having care plans made for my father without any consultation with or agreement from us, carers who knew my dad being forced to implement care plans that went directly against what they, and us, knew to be in dad’s best interests, and no care review for a year. Ultimately this led to a chain of events that resulted in my father being admitted to hospital with pressure sores and a catastrophic aspiration pneumonia that would eventually kill him.

You cannot force intransigent managment to answer your questions, you cannot change the dictates on your relative’s care, even though you know your loved one better than anyone else, and when you turn to CQC for help, you are left very disillusioned by the incredibly slow response, lack of transparency in their actions, and that fundamentally they seem very unmoved by so many vulnerable elderly people being at risk.

Add to this the loss of care staff who you have known since the day your relative moved into the care home, and whose work and reputation you would defend as both a relative of someone in their care and also as their friend, and you have a situation where you feel utterly helpless. No matter how many times you mull it over in your mind, you will never find a resolution to the fundamental question of why people with no knowledge or understanding of dementia, no concept of compassion or indeed a caring bone in their body, would wish to run a care home where the most vulnerable, sensitive and highly dependent amongst our cherished elderly live.

To see what had been such a happy home, where relatives, residents, staff and management worked together, pulled apart within a matter of weeks is something I will never forget. Not only did my dad lose the continuity of care that had added immeasurable quality and richness to his life over all those years, our time with him was blighted for weeks by on-going arguments, upset and disharmony. We lost friends, happiness and actually, in the end, dreaded visiting.

Having a loved one in a care home is hard enough for any family, but it is the bonds you form with staff, and the joy and comfort you see them bring to your relative, that make it bearable. There is no price you can put on that, and no agency that you wouldn’t beg for help to try and halt the tide of catastrophe. Tragically, having persevered with trying to change a situation we clearly could never change, we had actively begun to seek a new home for dad when, on that fateful night in March 2012, he aspirated on his own vomit five times, setting up a pneumonia that his body just could not fight off.

My advice to anyone going into the caring profession, be it as a carer, nurse or in a management role, would be don’t do it unless you can care about others as much as you do your own flesh and blood. If you are a manager, don’t be a dictator, don’t treat residents as a commodity, and don’t make the lives of their families unbearably hard. When staff are loved by residents and relatives it is for a reason; we know how hard it is to find these wonderful people, and how special they are, so listen to us. Finally, above all else, remember this: care homes are for caring, prisons are for punishment.

Until next time...

You can follow me on Twitter: @bethyb1886

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