Oh dear. My pre-Crimbo sunshine has gone with the advent of 2017. Waiting for accountability still. Some random thoughts and reflections here. Apologies for any repetition. We’re getting mighty weary waiting. (Actually worse than weary, but there you go.)
First, a brief recap of some very key points:
If someone told me back in the day we’d still be waiting for accountability in 2017 I’d have refused to believe it. We’re talking about the NHS, for goodness sake. Of course it wouldn’t take years…
Such naivety.
Like many other families, we’ve been consigned to a half life (at best) since LB’s death. Forced to ferociously police and push for interminably slow, and too often reluctant, processes to grind on. Fun, the small stuff in life, largely shelved. Work a distraction rather than the focus it used to be. Our lives have been transformed/brutalised because LB was not seen as fully human in life or death. And because he died in NHS care.
I was having a twitter exchange about patient safety/bereaved families the other day with a well known and influential GP. S/he refused to listen but tweeted a cloying ‘If you prick us we bleed…‘ Gordon Bennett. I was quite proud I wandered away from that exchange with no whiff of a swear or ten.
The comment sheds a bit of light though… About senior health and social care bods who seem to be pathologically unable to put themselves anywhere near the shoes of bereaved families. People so firmly focused on their own shoes (careers, status and the like) with the coatings of arrogance (and sometimes immaturity?) that seem to come as a perk of these positions. People with the power to both discredit and further alienate families pushed to extremes through the heady combination of grief and injustice. People who should, really, know better. And do better.
Here’s a thought for the new year. Why not ditch those goggles, park your shoes to one side for a bit and give what happened to LB, and others, proper scrutiny and attention. Read the extraordinary and repeated unwriting of scandals, the limp dicked excuses and half baked non explanations/obfuscation in statements, reports and reviews. Look at the ridiculous time that’s taken to never get anywhere. Stop worrying about pricks and try to imagine what it must be like to endure life after the preventable death of beloved family members in NHS care. A particular hell with no end in sight. It may well be a cathartic experience. You never know.
It certainly can’t hurt.
mydaftlife 
where are the prosecutions by regulatory bodies ? removing bad practitioners does nothing to discredit those abiding by their oath and not causing harm or death to their patients. The sooner a group of disabled actors enter the care providers and hospital departments of this country to whistle blow further the better. The unexpected death of ‘ the right sort ‘ of person in their 80s is investigated as per statutory requirement and can be concluded in under three months . How so ?
The brief recap of key points is it.
Please let’s not allow ‘The same shit, different year’ as my friend quoted to me yesterday.
Until the current wrangle around who’s responsibility it is to support people with learning disability to access health care, people with LD will die too early.
People with LD who live at home with parents , however aged, can mainly access primary health care – this is not so for those who live in ‘supported’ living.
Where LA’s have commissioned cheapest agencies who provide minimal support, can also be dangerously dogmatic that health care support not being their job (or budget). At same time they use myths of enabling self determination for all, as excuse. .
Where there is no family people can get very sick indeed.
Families who can, put pressure on LA, who increasingly resent family.
Two choices for family bow to all unpleasantness and pressure – don’t support family member and they get very sick and can die. Support family member and challenge the LA for not supporting son daughter…… and receive aggressive threats.
Meanwhile cash strapped NHS after a couple of years of holding names on a waiting list for LD nurse access to NHS for plus two years, will respond.. saying person with LD ( in sons case – Downs, multiple speech, partial sight and serious physical, disablities) is not sufficiently LD etc to be supported by them. Back to LA.
Families can then complain – go to NHS and or LA ombudsman for another of couple of years or so, while at same time supporting son or daughter..
And at same time family is being battered by increasingly pissed off LA.
People with no family get very sick…are admitted to current NHS culture and care…far too late….. and they die….fat too young.
People with learning disabilities who have loving families are admitted to current NHS culture and care…and they too die…. far too young.
Seek justice..get battered.. Circle goes round and round
Apologies for dodgy punctuation and other typos.
In bed with flu…
‘People who should know and do better’ – they won’t do better once you complain about the NHS, they simply have no other response than ‘defend – and attack’. Over the past few weeks I’ve been trying to extract a full copy of my records from the north Wales NHS – I have been repeatedly lied to, each time being told that ‘all’ the records have been released. Each time I have then described specific incidents that occurred asking for those records – the response? Ooh, yes, we do have them after all, we’ll send them on. And I then receive another set of incomplete records being told once more that I now have them ‘all’. I was eventually told by an off-guard member of staff that some of my records were ‘removed many years ago’. Really?? And no-one told me? And where have they been removed to? An e mail to the Chairman of the Health Board regarding this has been ignored… Last week I was told that my mental health files were now available – there should have been files dating back to 1984. There were only records dating back to 2002 with huge swathes of those missing. The illuminating thing however were that records relating to me in 2013 were released, records that I’d never seen before – there was stacks and stacks of misinformation, and some phenomenally serious completely unsubstantiated allegations. And one particularly dreadful psychiatrist repeatedly documented that I was ‘seriously psychotic’ and ‘deluded’ because I was maintaining that there was abuse taking place in the mental health services in north Wales. The Health Board in north Wales is now in special measures – because of acknowledged neglect and abuse in the mental health services…
When we read these documents, all my friends simply said ‘this is dreadful – get blogging…’
It seems that going public is all we can do. We have an institutionally corrupt, completely unresponsive NHS that is exterminating vulnerable people and it shows no signs of stopping doing this. Nothing on earth removes failing Board directors – doesn’t matter how many scandals or deaths take place on their watch, or even if they’ve been involved in criminal conduct, they cling on like limpets with no sense of public service at all. And anyone who dares complain and doesn’t melt away when they are initially faced with NHS defensiveness can expect a full on hate campaign which will characterise them as a mad bad utter bastard…
I agree a hate campaign. But in my case Sara’s and weary mother’s. we are trying to protect our vulnerable sons and daughters, under the MCA, and we are totally powerless against this hate campaign
Shirley
I don’t experiences this as rooted in hate. Hate is something else ?
Our life path of never ending fear, anxiety – all energy, creativity and happiness sapped, emerges from inviolate power without any accountability at all. Power that is insensitive to even the biggest cock ups.
And sometimes suffers from downright stupidity.
More cock up than etc..?
And lots of other other stuff.
In Social Work for example, training, registration, recruitment and organisational recycling of weak leaders and managers, compounds all..plus a form of what can seem to be a conditioned form of group think. A distancing and blinkered set of shared perceptions – where others ..that are not ‘us’..are always ‘others’.
Lots of training in SW going on in ‘building relationships’ at present..that does always seem to stretch to ‘others’ ?
Out of all this…any challenge by us ‘others,’ – laid at inviolate (often self appointed) status and authority, even when accompanied by intelligent evidence and sound common sense – can cause destructive and dangerous reactions….
And this never ending cycle..of no improvement at all.
Rooted in hate…no ?
(There are many really good brave people struggling to overcome all this within their own organisations)
All thanks and credit to them.
The thing is Sara I do not think they know how to put themselves ‘into the shoes of the bereaved families’.
To put yourselves into the shoes of people less fortunate takes courage, empathy, compassion and guts. Instead we are dealing with people who have spent a long time riding on the gravy train known as the ‘NHS’. Money and power are the only gods they worship and woe betide anybody who challenges the status quo.
When I think that Mr. Cameron and his wife both knew the heartache and worry of caring for a child with a disability and yet when in power did nothing to stop the downward slide of the services which were enabling families to cope. Instead governments are channelling huge sums of money into big business to warehouse our learning disabled loved ones into ATU’s. Who is sanctioning this? Surely these people could be living in their community at half the cost of an ATU. Something is wrong here. Who is on the fiddle? Who in government have shares in these businesses?
Regarding your last question Pauline – ‘who in Government have shares in these businesses’ – its possible that an awful lot of them do. The financial arrangements regarding the big care companies are so complex that they’re very difficult to unravel, involving successive take-overs and what I call ‘umbrella’ companies (sorry, I don’t know what the real term is), but a few years ago someone unravelled one example for me – and one of the major shareholders was Chris Patten, but it certainly was a tortuous path that led to him. And of course during the New Labour years there was a very well-travelled journey from Health Minister to director of company involved in private healthcare – wasn’t Patricia Hewitt the first well-publicised example?
yes the ‘ unravelling ‘ , how many tenders/awards would withstand close inspection ? care provision, advocacy and consultancy . Newsworthy you would imagine.
I can prove the fees for my son have gone direct into a profit making organisation – but it isn’t newsworthy in this day and age. Finola Moss says it all
Yes Shirley.
Finola Moss is shining a light on the large corporations that are blatantly profiteering at the expense of people who are mentally ill, have autism and are learning disabled.
Long may she continue to do so and lets hope that someone in government who has the power and a conscience listens and does something about it.
I can assure you (and all who read this blog) that I do mean hate. I would not use the word lightly. These are people who are set on destroying the family, and annihilating any one who stands in their way. The Mental Capacity Act gives them this power.
Some LA staff do hate, I believe, because they act almost too callously for it not to be hate.
Others are just eager to hide failures, and want no questions asked, which leads to ruthless behaviour.
However, I had a very good response from NHS and LA directors at a time when I think there were better people. They asked me what I wanted, and delivered. They then left, and the current directors seem corrupt – hence I write.
Even now, however, half of the points in my complaint were upheld, but lifelong damage is done.
And also those needing to take action haven’t had any communication about what they must put right. So complaints systems are extremely inconveniencing to the family.
I think it’s a good idea to make public our communications to speed up resolutions.
The good ‘others’ exist, and need public scrutiny to happen, in order to help us.
Shirley
I have met Publicly paid monsters.
They can treat us and ours, who have done them no harm at all -.appallingly. We can irritate and offend merely with peer to peer behaviour, powerful people who do not believe we are in any way or at any level..their peers.
Our reasonable questions are seen as an offence ? Our not stopping…. brings down penalties ?. Repercussions.
I suppose I have increasingly felt that these people – who use their power against the interest of vulnerable people (or their champions) do not ever see them as people far far less as peers …sufficiently to hate.
But I most certainly agree ..it jolly well feels like it.