Category Archives: Pain

Audit, Inspection and Scrutiny: the three ugly sisters?

This popped into my inbox today:

“The need to drive up the quality of care for patients, whilst delivering efficiency and productivity, is a key principle for the NHS. As pressure on NHS finances continues to build, UKAS accreditation is increasingly being used as an effective way for purchasers and commissioners to demonstrate that they can achieve ‘more for less’.”

I felt a stirring of irritation. This blog is the result……….

I know organisations have to behave commercially and tick boxes in order to thrive. I spend part of my working life encouraging and supporting charities and NFPs to do exactly that, but without losing their heart and soul to it. It is possible. But as an old nurse (registered about a century ago) and vehement supporter of the NHS original principles of free at the point of need and paid for by the entire community I am increasingly dismayed by the passionless, sterile performance of the people tasked with – and paid handsomely for – managing “public” health services. I have seen patients become the enemy, clinical standards side-lined in favour of improvement on the balance sheet, kindness become irrelevant, and buzzwords and trends take the place of clinical and compassionate behaviour. Health and social services are scrutinised, inspected, audited, governed, examined, professionalised more than ever before and we still have Winterbourne, elder abuse, Southern Health (pauses to spit), frequent reports of casual abuse and cruelty (that we know of), and we will all know those “care” homes with a good CQC rating which pong and employ people you would not want to sit next to on the bus. We will all know of supported living services that are little more than one person institutions with little or no meaningful activity and engagement – or to put it another way, that warehouse people in units of one, creating the illusion of choice and a Life but deliver isolation and fear. We have seen Southern Health reduce victims and loving families to statistics and irrelevancies, destroying people in order to prop up a system that sucks and protect the very people who allowed and encouraged the system that killed people and fixed the blame on others, with lies, obfuscation and bluster.

Some inspection agencies, several tiers of consultancy and management and many more are too often yet another layer of “approval” or box ticking to chuck at organisations. Along with services like 111 –  a dangerous irrelevance that often removes much needed funding from frontline services for the return of reduced standards and increased risk –  they also create a cash cow for canny providers without delivering any improvement in clinical outcomes, or supporting real people with the very real challenges of everyday ill health. We seem to simply carry on increasing layers of approval, fresh hoops to leap through (some with fire) rather than examine very basic factors. Often the people creating those hoops are not clinical and have little understanding of how  things actually work in the real world. I keep hearing that we need more funding for this that and the other – I keep seeing a variety of groups being blamed for an ever increasing number of failures and deficits: currently GPs are getting a hammering despite being possibly the last group of professionals who should be blamed and who, along with dedicated skilled nurses have kept things going against the odds. Commissioning services is clunky, inappropriately targeted, poorly contracted and badly managed, which is a criticism of the process –  again often created by people who do not understand the real workings – and not the people who have to work with it. The competition itself reduces the capacity to develop and really grow health and social care support services because contracts are not only badly drawn and managed but are up for renewal so frequently it is impossible to invest in services and also make that holy grail of profit. Profit is not going to be the first thing to go.

I firmly believe in a skilled and educated workforce well managed and led and supported with career choices and pathways. I also firmly believe in holding organisations and individuals to account. I believe those can be delivered without the huge self-propagating self- perpetuating roundabout of new mandatory qualifications and accreditations, incompetent inspections, and without the workshops, consultancies, projects, papers, enquiries, processes, requirements and bottom feeding organisations that have sprung up around services that are actually intended to protect, care for and nurture us.

There comes a time when the volcano erupts, the boil is lanced, the pus drains and healing can take place. We need to recognise that the privatisation experiment which was trumpeted as the way to increase choice and competition which were equally being promoted as in our interests – I am pausing for the laugh here –  is a failure, delivering little more than profits for largely incompetent organisations and draining the body of the NHS of resources and talent. Choice is not what sick people want, overall – they want skilled professional care, close to home, delivered kindly by people they trust and with their involvement in the process. And answers if something goes wrong, with a meaningful apology attached. Dividing professionals and organisations with “competition”, asking for innovation when compassion is good enough, blaming good people for systemic failures and expecting mountains of assessments, graphs, justifications, and hounding good people for honest mistakes does not result in decent health and social support.

Have a look at this: Laugh and then weep.

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Look at me

I saw a few posts on social media this week about people who ignore their children in order to check their phones and messages…..you know the sort of thing, a picture of a fed up child and a parent staring at a screen. In my study (I am on the fourth floor and commonly known as the Mad Woman In The Attic, not without some justification) I watch parents taking their children to school and some parents even have earphones in – blocking out not only the wonderful sounds of the morning, birdsong and breezes, but also their children, who stump along next to them glumly, often trotting to keep up as the uncomprehending parent  marches ahead in order to get that task out of the way and get on to other important things such as staring at a screen and drinking coffee. It makes me feel sad…..

It also makes me angry that we are still at this point in our evolution. For the past thirty-plus years I have been attempting to inject humanity into health and social services on different levels, since the horror of student nursing (about a hundred and fifty years ago….)  when, on my first mental health ward for elders (the clue was in the shorthand title: PsychoGerries) I trotted along for my first day to discover a shabby-coated and smoking staff nurse standing – slouching – in the centre of a semi circle of commodes on each of which there was a naked elder. Both men and women were lined up together for ritual and casual humiliation. After a brief pause to get my breath as I stared at him I sent him home (well, there were a few well chosen and short words as well) and along with some chums set about restoring a little dignity. At every stage, for years, I have seen that same ritual and casual disrespect and humiliation handed out to all and any people using services by people who, if you met them elsewhere would probably seem like decent human beings. From elders having crap food shovelled into their mouths by smoking and grubby “carers” to people with learning disabilities ignored and belittled for being who they are, not even allowed to choose their own bedtime, their own food, the people with whom they will spend their days – their lives.

Don’t get me wrong: there are some brilliant support people, some fabulous organisations who strive to be good, to deliver humanity in their services and campaign for change. I know, and have worked with, many fab people who actually care and understand what that means (ie that it isn’t just about smiling a lot and nodding, but it is about taking risks, liking and respecting the people around you and understanding that each of us is individual – and encouraging that). But in the grand scheme of things these people are too few, and the others are tolerated because of where we are in our evolution. Which takes me back to where I started.

Being with people – supporting people, caring, whatever word you use, and the words matter because you will behave in a way that the words expect – IS the point. The things we do, taking children to school, supporting someone to eat, going to a gig with someone, supporting someone to put their clothes on, shopping with someone, they are all component parts, each as important as the other, as important in how we do them as well as that we do them at all. Those grubby “carers” shovelling food into someones mouth are indeed performing the task in their job description but their main task – of being with someone and having that relationship with someones humanity, their person-ness – has been lost. How much more time and effort would it cost to look at the person in front of them and see their person-ness and be kind? But that kindness is by and large not factored into how we commission, deliver, train for, reward and recruit to support services. Our task oriented focus takes us from task to task, KPI to KPI, box to box and target to target. When was the last time you saw the word “kind” in a job description……?

I remember – and I wish I could forget – watching a “carer” stand up, walk over to an elderly woman with dementia, and without a word roughly haul her up and out of her chair because it was “toileting time”. I sent a nurse home one night years ago because as we were nursing a comatose dying woman in her bed the other nurse leant over her – right over her – and said quite audibly to me “I don’t know why we are doing this she will be dead by the morning.” Casual cruelty, thoughtless indignity, the view of people as lumps of meat to whom we have to do things in order to earn a pay packet. Hauling ourselves and the people we support from task to task as quickly as possible…..for what? That task is a means to an end, a conduit through which we can nourish and nurture the relationship – it is the means, not the end.

It is that corporate and individual refusal to see people as human, as individuals, that allows learning disabled people to die in hospitals they should never have been in far away from the people who love them and allows the people who allow it to happen to bear no meaningful consequences.  It allows elders to be warehoused in buildings from which they will never leave until they die, who will never again feel the breeze on their faces, hear the birdsong or the sea, have someone look them in the face and hear what they are saying, be useful, be heard. Be a person. Have fun. If we are not having a little fun along the way what is the point?

Please take some time to look at the links here. Stay Up Late is a brilliant grassroots charity promoting the right for people with learning disabilities to have a choice about how they live their lives. That it is needed at all is telling.

The more difficult read is the piece about assessment and treatment centres. Read it and weep. And then sign up to the 7 days of action. Please

And please read about Connor Sparrowhawk and his phenomenal circle of support. Even after his avoidable death the people responsible have had little or no consequences, even after compounding the pain by denying wrongdoing, doing a bang up job of saving their own skins, and reducing the humanity of everyone involved. Shameful. Painful. And his Mother has responded with dignity and energy – I listened to her on the radio a few months ago while I was driving and I had to pull over and stop because I was weeping too much to continue driving.

Home

https://theatuscandal.wordpress.com/2016/04/20/natural-causes/

https://www.opendemocracy.net/uk/shinealight/clare-sambrook/on-connor-sparrowhawk-s-avoidable-death

The “care” industry is regulated more now than it has ever been – there are audits, documents, inspections, investigations, inspectors, investigators, commissions, boxes to tick, all manner of things supposed to keep us safe. And yet the abuse is still there, as open and filthy as ever. Safety is not guaranteed – and anyway, is safety the most important thing in life? Isn’t fun –  and autonomy, and independence, and risk, and loving and laughing, making mistakes, and pain and heartbreak  – as important? Aren’t those things the things that make us human? Those safeguards will never take the place of kindness and humanity, of seeing the person in front of us and respecting them just for being themselves. Let’s try that – and owning it when we get it wrong – for a while and see what happens………

 

 

 

 

 

 

 

 

 

 

 

 

 

A little pain goes a long way…..

Gosh how we undervalue our physical selves! All High and Mighty about values and philosophies and high-falutin’ principles we ignore the uncomfortable truth that without physical comfort we can sink.

After a week of volcanic uncontrollable pain which I knew was temporary but that didn’t help, the pain is coming under control and the say-it-quick-and-it-won’t-matter cause, a massive infection, is starting to abate. Good grief I even got dressed for part of today! The worst is over and I am re-entering the world of humans again even though I still can’t talk without sounding like Sylvester Stallone chewing socks. I want to stay awake all night and read poetry! Write poetry! Get that sunrise that has been in the back of my head right to the front and then onto canvas. Read A Brief History Of Time again until I actually get it. Having spent a week unable to do anything other than lie down and let my mind rattle around I want to jump and dance – not that I could realistically anyway with two left feet and a dodgy knee but the urge never goes. Actually it’s more like three left feet when I get going – how on earth do cats and dogs and other cleverly quadruped creatures co-ordinate four limbs? I struggle to keep the two legs I have under control, on a good day.

I have dived deep into the many dreams that came courtesy of the analgesia and had the time to understand them – without that luxury I would have romped out of bed the morning after my dreams and failed to reflect enough to see that, for one example alone, on one night the unrecognisable woman in the dream was my Mother and lying there following the dream backwards I was able to start to understand a few things that had foxed me for years. With eyes closed and mind open I could travel around inside my head and find some of the obstacles there, and start to remove them. Thank you analgesia.

Moving from almost unbearable pain towards comfort it is possible to close my eyes and instead of the scary black holes that were there until today, see in their place now a multitude of constellations that give light and warmth as well as shade and comfort and I can watch and follow them behind my eyelids enjoying their shapes, colours and variety. They offer entertainment and reflection. During the worst times of the last week as a distraction I forced myself to stop and listen to the birdsong outside my window – a window through which I have, with great pleasure, watched the seasons changing for more than fifteen years and through which I have watched my children play and grow, and where my granddaughter now plays too. I was as warm and as comfortable as I could be given the pain and it was possible to start to look forward to the Spring listening to those birds, to picture the flowers and hedgerows and smell and taste the asparagus, spring greens, cucumber, strawberries, rhubarb as if they were already here. I was in my own bed, my own house, with my children making sure I was comfortable and my books and cushions around me and a shedload of pain relief making life ok.

I was able to look forward past the pain because I was physically secure. How much would I have coped with the pain had I been cold, wet, outside and without comfort? I have little enough to be grumpy about even with the temporary illness, but I still managed it from time to time. How dreary, how impossible to cope with each day had I been homeless or stateless, insecure and alone. I am one of many people fortunate to have the opportunity to work and create an immediate environment that is comfortable, happy, peaceful. I have provided for my family, alongside my husband, and we have done it pretty well. We can be satisfied that we have done a decent job and we reap some of those rewards in terms of love and affection, support and security, wellbeing and happiness. Damn, I am lucky! There are however many people denied that experience, denied the opportunity to raise their children in safety and warmth, sometimes even without adequate water, food, protection. As I look forward to Spring and those strawberries many others look forward to nothing at all, hoping simply to exist for another day, hoping to keep their children alive, if not safe. There are people living in hospitals who should never have been there and who have suffered infinitely as a result, the product of arrogant careless models of “care”. There are people bereaved because someone didn’t give enough of a damn.There are people who sleep on streets and benches because they struggle with a world of barriers and expectations. There are people in prisons because they have no meaningful means of breaking away from the ropes that hold them in place and fix them in the amber of chaos. There are elders locked inside “homes” who will never ever feel the breeze on their face again because there is no-one to help them outside because of “staff shortage” and because of people who don’t get that some things matter enough to make them happen even if they don’t show up on KPIs and audits.

Creative as I am I cannot even begin to understand how that feels. I can empathise and I can witness – and both of those things matter and support a greater understanding and tolerance. I can try to make a difference, and I do try. But those things, those terrible circumstances, will continue for too many people. That is almost as unbearable as the pain…….

As I recover and anticipate with pleasure and gratitude the rhubarb, spinach and strawberries I will keep in my head all the people who I know are not as happy or lucky as me. I will offer them my love and respect and will continue to try to make a difference in the tiny ways available to me and I will try to create more ways, and I know many many fabulous people who do the same and more, and it is a genuine honour to know them.  We will keep on trying, in gratitude and humility and this last week has helped me to focus on that. Otherwise what is the point?

 

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