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...

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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...

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