Been sadly puzzling about my blog today. And the persistent theme of mother blame across LB’s inquest. It turns out the Band 6 nurse received a call from Sloven on the Saturday before LB was admitted warning him that LB may be admitted. Kind of astonishing given the community team (good old Oxfordshire County Council) hadn’t told us at that point that the unit existed. (Well they never told us actually). The nurse was also warned I wrote a blog which was critical of the Trust.
In his evidence, he said he thought the blog coloured the care LB received. A horribly distressing and harrowing thought. Both the community psychiatrist (Dr X) and unit psychiatrist (Dr Y) seem to dislike me with a chunky dose of intensity (Dr Y speaking on behalf of Dr X who didn’t give evidence). Other Sloven represented staff included (coached?) comments about how difficult I was in their witness statements. These weren’t sustained during the inquest.
“Dr Ryan called Dr X DR CRAPSHITE in her blog…” Dr Y’s barrister said with incredulity at one point. To an audible (and cheering) response from the public gallery. Sitting, pinned in a sort of clenched, beyond stressful hold, about a foot from this ‘cheery’ guy (as I was for the two weeks), I thought how LB would have forever after asked me with beaming delight, “Mum? Is she called Dr Crapshite, Mum?”
Just before the inquest we were sent a copy of a letter written by a then senior commissioner at OCC to a disability activist. 4615 words of background, attack, excuse, vitriol and considerable billy bullshite. Both Dr Y’s evidence during the inquest and this letter present a picture of a difficult and ‘damaging’ mother who didn’t want her son home [howl] and staff terrified of appearing on partial and inaccurate blog pages. Dr X apparently refused to treat LB in the community because I was so toxic.
Wow. Wow.
I only met Dr Y a few times in meetings with several other people when LB was in the unit. I met Dr X once in January (briefly) with LB and Rich, and we had two telephone conversations. I never met the OCC bod. Of course we wanted LB home. I can be difficult at times. I was ‘difficult’ the Friday before LB’s admittance (on the phone to the crisis team) because I was terrified, desperate and was being told to contact an on call GP. An inappropriate suggestion given the circumstances. I also have a job, loving family and friends and interact, pretty cheerfully on the whole, in various settings with all sorts of people.
Katherine Runswick-Cole wrote an ace post about mother blame back in the summer for 107days of action. Most mothers of disabled children appear to experience this (toxic) blame at some point (several, numerous, sometimes continuous points) across their kid’s lives. Particularly when their children reach adulthood. I’m now wondering if you chuck in social media activity, the blame intensifies and becomes something else. Professionals seem ill equipped to deal with the (possibly public) scrutiny social media offers families. It’s experienced as unsettling, upsetting and disrupting. Sloven and OCC clearly remain unable to deal with (what was originally anonymised) scrutiny. Unable to embrace the immediacy of ongoing feedback, commentary and opportunity for engagement with services and support. Instead trying to hold onto archaic and outdated systems.
[Note to any local authority/NHS Trust… people/parents/family members will quite likely bite your hand off at the sniff of any genuine engagement/conversation around the provision, quality of support, potential future of people’s lives. Love typically underpins all these actions and responses.]
The defensive and ridiculous responses by senior professionals and officials during the inquest and over the past two and a half years, chills me to the core. That, in some way, these responses might have contributed to an obstruction of LB’s basic care and denial of our expertise/knowledge (while these pages were being monitored by the Trust) is so unspeakable, so hideous, so awful, my heart, body, brain, being freezes into something unreachable and unrecognisable.
There seems way too much focus on self interested concerns, protection, status, hierarchy and reputation among senior staff. With this blog as a central feature.
I’m not sure frontline staff were aware of or gave a shit about it.
mydaftlife 
The state are terrified, of the truth and exposure, a blog can give.
That is why the media are effectively gagged, and, all are subject to codes of conduct, and confidentiality.
You would have been, just as horrifically vilified, as possible, as you had to be blamed.
Despite their duty of candour, inquisitorial system, and duty to court, and patient.
Self preservation, and win at all costs, rules.
Sending you big fucking hugs, Sara xxxxx
You are so right SARA about everything you have written in this article. I have yet to meet a family, particularly a mum who has not had a negative experience of either bullying, inaccuracy of written or verbal information, ignorance, arrogance or delay or neglect of duty from a social care or medical professional and I have experienced all of these from different professionals involved throughout my son’s life. And it makes my blood boil to know this bad practice continues unchecked and families are separated and hearts broken by a dysfunctional care system.
Oh and I forgot to mention some education professionals are subject to the same failings as health and socialcare.
It is not a dysfunctional system.
It functions as they want it to and they have created it.
It has been designed,by laws, procedures, regulations, courts, research, and process.
To exclude parents..
As they, are the only ones, who have no other interest, but their loved one’s.
They system is designed, to make as much profit, and, advance as many self interests, as possible, out of their ‘patients’, carees, our children, and to do so, the parents must be cut out and/or blamed..
Don’t ever stop blogging Sara. The problems lie with the trust and their agents NOT YOU! When I was nursing many moons ago, I had responsibility for a 45 year old lady who had suffered a sub arachnoid haemorrhage. She was very ill; in fact, she was dying. I treated her as if she was my relative. I turned her every 2 hours to prevent pressure sores, I cleaned her mouth, brushed her hair, washed her and spoke to her constantly, even though she was unconscious.
Her family (who were a bit rough and ready) asked constant questions about her care and treatment which I always tried to answer to the best of my ability.
The sister on the ward didn’t like them and was always shooing them away whereas I would involve them in their relatives care.
One night, when the lady took a bit of a turn for the worse, her relatives were crowded around her bed. The sister told them they needed to go home because they were in our way!
I was shocked, I felt as if she’d slapped me in the face. So God knows what they felt like.
The son, a strapping 6 foot coal miner, squared up to her.
I stood between the two of them, caught hold of his hand and said,
“what sister meant to say, was that you all need to rest and eat. So why don’t you go home for an hour or two and if anything happens when you’re not here, I promise I will ring you”
A few days later the lady passed away, peacefully, with her relatives at her side.
The next day the son turned up on the ward with a bunch of flowers and a box of chocolates.
“These are for you nurse and only you, for looking after my mam the way you did and being kind to us”
This was the 80’s, the men in the family were all coal miners, the miners were on strike, money was very tight. I knew that he really couldn’t afford to buy me those things.
I was invited to the funeral and at the wake, the son pulled me to my feet and gave a speech to those present about what wonderful care I’d given his mum. I was embarrassed (just doin’ my job Guv) and proud in equal measure.
I’ve never forgotten that family, it taught me that when someone is ill, either mentally or physically, you don’t only nurse the patient but the family as well.
God bless you and yours Sara X X X
They were cornered so tried to make you feel guilty. Guilty of what though – loving your son too much…? bringing it to public attention because you tell it like it is? Don’t play into this, you have been through enough. You need to be stroked, cossetted and feel free to exercise your freedom of speech – not blamed…never…x
You have done, and are still doing, an excellent job of exposing the truth behind your own tragedy and the experience of countless other (difficult) Mums/ families!
Hi Sara, not only parent Carers but all Carers are blamed in this way. Coo and I were in hospital for 3 weeks and from the off it was made crystal clear my input/presence was unwanted! That is until the proverbial hit the fan! Should never be this way! M x
Gee ,where to begin. Firstly you come across, if I may , as a caring and pleasant person who would back up any reasonable treatment plan and so on. Who was clever with a good sense of humour, who would be a delight to work with.
What they didn’t like was the idea of scrutiny!
Horribly ,I think poor LB would have had the same neglectful treatment no matter what. There was no clinical hierarchy and so no lines of clinical responsibility. So nobody checking and checking again that clinical information had been shared with the team, to make sure to check off the risk assessments were done and applied and so on. My impression was as a cost saver the clinical hierarchy had been done away with. There was instead a fairly crap bunch of people mixed in a sort of porridge of mediocrity.. One way of saving money is to present firstly everybody as clinically equal , nobody in charge and nobody needed to be as the latest groovy computer system(not here yet, few glitches ) will solve everything. Staff will be trained on line. But there is nobody in charge to check off everybody has done this.
Dr Crapshite comes accross as incompetent, arrogant and disdainful of you and of her patients.
Learning disability is an unpopular service. I find that the people who end up working in it are either good sorts with a real vocation for working with learning disabled people ,or mediocre bods who wouldn’t rise in more popular fields, wouldn’t be allowed to make the tea in more popular fields but ,in learning disability , can be in charge of entire departments !
It is so easy to be painted as difficult. I think we all try so hard to come across as reasonable, friendly, in partnership appreciate. We want things to go well, we don’t want to be “Here’s Mrs X again on the phone again”. But the moment you question anything, ask why something isn’t happening or disagree with anything you are presented as firstly dim. “Mrs X ,or better yet Mum(puke) , you clearly don’t understand what is going on. We will explain to you in more simple terms how fab it is.”
Secondly, if you keep in not agreeing you become that difficult person. You have snippy voices and loud sighs when you call. And these petulant people are in charge of your learning disabled person. My son has autism and is learning disabled. I am “that woman” with a lot of services and I tried so very hard not to be.
It wasn’t the blog. Its that what was on offer was criminally shit.
Bless you Sara please keep,going.
As I write this my son has run over my foot with his scooter. Like LB he laughs a lot. What you are doing and have done might have made his life in the future a bit safer. Thank you,
Sara As you know I have been through the Courts since 2006, and had hostile dealings with LAs since 2000. And I have spent these years trying to work out why??? First of all they are hostile because I am a mother. Why??? Then I realize this is simply a power game simple power and I am the weakest. I am the weakest because I have to protect my son—and they can then go in for the Kill. They have the corrupt power to stop my contact with him, and they will use this whenever possible. It seems to me this is a very primitive instinct, and the adverserial tone of the justice system allows it full play. It is a modern day witch hunt. Can I refer you to Mr Justice Charles latest statement in the case X on how essential the parents and family are to P. This is a complete turn around from all his statements since I first went into his Court in 2007. In the beginning I tried suggesting they were slandering me useless. I tried suggesting they were harming Martin, and so on. It just gave them another chance to have a go at me.
I spent all day yesterday trying to get health care for a very vulnerable person who has no relatives, no family – no one at all. This person lives in ‘supported’ living and lives a distance from me. Without me advocating for this this person on a regular basis their life would be grim and isolated. No one at all to help him/her when support is shockingly bad or or withdrawn yet again; no one complain or get it back.
I receive all the old routine of ‘it is …..’s mum’ again when I make contact with LA or care agency etc for my own son/daughter.
Yesterday was a classic. This person has a care plan where I helped, the agreed plan includes need for agency support for all health care. Agency disagreed and plus had no staff.. So it went on all day, Doctor had no appointments for days and days. Pushed harder got appointment for less days. At least email is silent so did not hear ‘hurrumphing’ I got from phone, when I sent yet another one.
This persons symptoms were potentially life threatening.
I agree with Sally, two types of people come into LD/adult care work, those who have compassion and an innate drive to help and to heal, and more importantly they see and treat everyone as a peer. The others need power and status and both come faster in adult care/LD services. An excellent care assistant helped us yesterday.
Without me ‘pushing’ and care assistant putting head over the status parapit …….the outcome, potentially, could have been very different.
Just another day in life of people with a learning disability, in 2015.
And both our cards are marked again.
,
Sara your bravery in exposing the ‘could not care less attitude’ which often exists among the professionals that deliver services to people with LD. should be applauded. Snide remarks, attacks on your integrity, all have come back to bite them on the bum. The truth is out and they are the ones that look stupid now.
I apologise to the professionals that do get it right, but it is glaring obvious that the Sloven lot, from top to bottom, were arrogant and their egos were bigger than their talent.
Sara it seems that you have been berated for asking for help. I know what that feels like. It is like being punished because you could not cope with the situation and punished again for questioning their care for Connor. Let them stand in your shoes for one hour and see if they would not have wanted help for Connor. It is so crushingly cruel to be judged this way. Judged and patronized by people who have not experienced caring for someone with LD.
Thanks for fighting, and I wish you and your family peace.
PS
…..never got a call back. Was awake all night.
Above person with LD, was admitted to hospital this afternoon
I agree it’s the ‘pushing ‘ that upsets them. Advocating like yourself and constantly chasing the LA and mental health trust now for ten weeks. I could not believe my ears when I was recently informed my concerns do not reflect the beliefs and feelings of the person I was representing resulting in no measures being taken to alleviate urgent need. Having heard that old chestnut before I no longer feel hurt, sod them. I jump up and down until they do bloody listen, people living alone or with few contacts are being left at risk. Personally I would have something to say about three days of high support dropped without notice due to staff shortages that I heard about yesterday but I accept many many people are feeling extremely grateful for anything. Having nothing to lose these days makes it easy for me, I do remember how pleasant and accommodating I used to be with my contacts. I no longer presume I am dealing with a compassionate professional or even a competent one. There are diamonds I am sure amongst them as there are undoubtedly in the NHS but equally there are those who will have only just made the grade and have no humanity whatsoever.
I believe ‘mother blaming’ is widespread. My son hasn’t died because of it, but how many ‘near misses’ have there been/are there/will there be, due to parents/families being ignored, just because they dare to speak up and challenge the people being paid to do a job? Hope you and the family are bearing up xx
It’s always ‘mother blame’ – people of that little integrity know no other way to excuse their own inferiority. I’ve had the lot over the years and have generally come to the conclusion that most of them are just shit scared of parents (especially mothers) who are clearly more intelligent than them!
I had a good one a couple of years ago – consultant (male) announced ” we were worried about you yesterday – you were almost aggressive.” Well he was wrong – I wasn’t ALMOST aggressive – I f@@king well WAS aggressive! I was in his face and he will never know just how close I was to putting my hands around his throat – did he expect me to sit passively by whilst they carried on with their ridiculous farce called health care which was actually coming very close to killing my daughter? Not a chance! In defence of the medical world we owe a debt of gratitude that we could never repay to a guy I know who just happens to be a neuro with years of emergency medicine experience – he delayed a talk he was due to give, keeping his eminent audience waiting, to talk to me on the phone – listened to all I had to say and gave me the right advice to set things straight in my mind, resulting in me being 100% sure of my stance with the idiots we were having to deal with.
You call them all Dr. Crapshite if you want – there’s too many who deserve that title! Just last week I happened to use the phrase ‘low life shit’ as a certain consultant walked past us. Now I didn’t use his name but he heard it and if he thinks I was referring to him well – if the cap fits he might just like to wear it! 😉
I am in Scotland at present, and am trying to deal with the medical emergency I wrote of earlier today. I checked on the poorly person with LD this evening and was concerned that they seemed worse. They had seen a doc this morning after much pressure for appointment by me, and doc rang person later in day to advise that they came back tomorrow as they seemed no better. I have tried to get help from where I am on 111. No contact on 111 between the two countries in Britain. Could not help me. I tried to get help and the contact details for 111 in England through SS in the LA concerned; out of hours. No out of hours for LD! Contact went to mental health, who could not support but got me through to 111. I am waiting for call back been two hours. Cant contact agency to find out if they can support person if hospital needed, till 111 gets back to me, and now been 3 hours. Got phone call back from 111 para medic, who now will talk to sick person with LD, say may have to get out of hours doc. But no one to support LD person as no LA support available, and I have no idea if agency will support person to hospital if needed. I am 200 miles away.
Still waiting to hear outcome of para medic assessment /111. Such is health care support for people alone in ‘supported’ living.
Re above:
Waited for call back from doc/paramedic. None came. Called poorly person. A doctor? had telephoned, was told to see own doc asap tomorrow. No idea what poorly person could have shared with doc for I know from long experience of he/she that a careful process is needed to get all the info. Had explained this to para medic if a doc was to ring individual to ring me first for this information. Doc? did not.
No one called me back.
Still waiting, and as I was contacted to 111 by mental health team out of hours in LA, in England cannot get back to 111 to find out, as I am in Scotland. Gone full circle.
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Because I’d read this, I was able to stand up for myself today. Care company trying to blame me for their incompetencies. At one time I would have taken the blame silently and believed it.
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