Struggled a bit with the thought/context/rational for meeting Jeremy Hunt today, especially after reading Imogen Tyler’s powerful JusticeforLB post this week. The administrative grotesque. Highlighting how rituals like meetings and emails may expose the ridicule of people in power but perversely strengthen the legitimacy of the power holder. Shudder.
Disquiet in the Justice shed.
To meet or not to meet? How many meetings have we attended? What has actually happened? Other than ticking the ‘met the bereaved family/campaigners’ box. Reinforcing the the power of the meeting host while sucking the life out of #JusticeforLB?
Why have none of these NHS/social care meetings happened in spaces convenient to us? Or other families in similar situations? The administrative grotesque could be subverted by the powerful travelling to meet those who experience state atrocities. The brief meeting with the Leader of Oxfordshire County Council. And the impossibly briefer meeting with Monitor would have been a different experience without the six hour journey/cost involved. But nah. Meetings are firmly on the terms of those who wield the power. You make the time and stump up the emotional and financial cost to attend these or you don’t/can’t.
Expectations today were set firmly at low to ground level with that blooming hope light, the light that (remarkably and probably stupidly) hasn’t been fully extinguished, still flickering. He won’t… but he could.. but he won’t… but he could… flutterings of naivety.
Deb Coles, Rich and I met for a pre-pre meeting at the National Gallery café and thrashed out what we hoped to get from the meeting. We met Andrew Smith, our MP, in Portcullis House for a pre-meeting. Formulating more of a plan. And then set off, through the backside of Portcullis House to the Department of Health (or Death if you’re learning disabled).
At this point, spirits were reasonably high. We had a bit of banter from a Dept of Health employee who cheerfully snapped us outside the building. A before pic.
I’ll unorder the story at this point and leap ahead to the debrief after the meeting. Deb and Andrew (who were both superbly supportive and good company throughout the afternoon) offered the following reflections and cheeriness.
- It’s brilliant to get a meeting with the Secretary of State.
- He clearly listened carefully and was affected by what was said.
- He took away from the meeting three action points which are steps in the right direction.
- Change takes time.
- He was genuinely sorry about what had happened and the treatment we’ve experienced since LB’s death
The meeting started 15 minutes late with the announcement it would need to finish in 30 minutes because of a voting commitment. Two pre-meetings worth of stuff to cover immediately compromised. Eek. Just how administratively grotesque would this be?
We started. Vaguely focusing on the five points Andrew outlined at the beginning. Pretty soon I felt despair at the futility of the discussion. Sitting in a comfy cream armchair in an office that is the stuff of dreams, with a couple of people doing something silently behind us, Jeremy Hunt listening carefully. When Rich summarised our experience of Sloven shite across 2.5 years I wondered how these words could possibly be spoken without some immediate action; criminal, regulatory, resignatory or otherwise. The brutality of the experience remains extraordinary in the lived experience of it but also the non response to it.
A few hours later, sitting on a train to Cardiff with a lukewarm plastic glass of wine, I’m beginning to make better sense of it. Here’s my half formed thoughts:
JH was firmly in a space of making some innovative and committed changes/approaches to improving patient safety and changing NHS culture around safety. A bit too heavily focused (uncritically) on learning from the aviation industry for my liking but clearly passionate about improvement. The trouble was he subsumed the issues thrown up by the Mazars review into these more generic changes to NHS culture.
We were arguing that the lives and deaths of learning disabled people (and people within mental health settings) in the NHS demanded increased scrutiny particularly given the Mazars findings. If a group of people are consistently dying prematurely some sort of national mortality review board/ independent investigation mechanism is essential (unless we all agree that shit just happens… to, erm, particular people).
The meeting was brief and pretty forthright. The action points JH decided on involved some revisiting to check originally actioned points arising from the Mazars review were as robust as they could be, looking closer at the actions of the Sloven senior team and making sure the CQC inspection regime takes a more holistic view of people’s lives and aspirations.
Was it a good meeting? No comment.
mydaftlife 
Thank you for representing the many who don’t get to meet the Secretary of State…….altho plenty of meetings to attend (at own expense). I believe Will Powell was at same meeting and Will has campaigned over death of son Robbie for over 25years (Will has tried everything including looking at Robbie’s Law Duty of Candour) No doubt a real Duty of Candour was on Will’s agenda!
Glad to read of empathy shown by JH and once again I can only quote from Cure the NHS “Jeremy Hunt was the fourth Secretary of State we have met and we believe he got it!” Maybe JH is good at empathy! As SoS I wonder what else he does?
The Oxfordshire Group of MPs have succeeded in meeting JH, so let’s hope that the Hampshire Group do the same. However, SHNFT continue to find ways to delay disclosing patient data fro data subjects, Regulators and Ombudsmen – details at https://999crash.wordpress.com/blog/
Sorry – should read, “Disclosing patient data to data subjects….”
As Jeremy Hunt , heads up the huge cabal of,’ lock em up and shut em up’, for ever increasing profit, there is little hope, that he can, or will, do anything about the perilous plight of the LD, and theirs, and their families non existent rights to a non abusive service, that costs a fortune of their money .
They have perfected a honed unaccountability of the NHS, so change is the last thing they want, just progression to maximum profit, least accountability and choice.
https://finolamoss.wordpress.com/2015/10/19/effect-of-the-connor-sparrowhawk-verdict-and-puplic-accountability/
Change takes time———————– is beyond insult.
Would they say that on seeing Auschwitz ?
It is now over 2 years since Tianze Ni, was taken, over half a million of our money has been paid out in his treatment. which has destroyed him, Stephanie Bincliffe died at 25, after 2 years of complete incarceration.
We do not know how many have died in St Andrews, and are today dying.
https://finolamoss.wordpress.com/2015/10/19/effect-of-the-connor-sparrowhawk-verdict-and-puplic-accountability/
It is beyond horror, that these poor, tortured souls, and their horrendous abuse has not even been exposed to the public.
And it continues as I write.
And all, is cosy, orchestrated chats, and no doubt, deliberately curtailed meetings.
Sorry in relation to my comment, I have linked in the same post twice, instead of this one https://finolamoss.wordpress.com/2015/07/07/autistic-parents-have-no-rights-and-the-private-corporate-parent-is-unaccountable/
As good as anybody could get, I reckon! Well done you!
Constant dripping wears away a stone (though it does take quite a long time)
Well done Sara and Rich, for keeping the flame of hope burning. Wise Grannie is right, though some stones are more resistant than others.
Thank you on behalf of the rest of us whose loved ones are at risk or have experienced abuse and mistreatment in these institutions. And those who died. Thank you for taking this step and continuing the journey and for the determination to change things, at such huge costs to you and your family. You are not alone and many of us will not lay down easy and will add our voices and actions towards until something really gives, whatever resistance we encounter – we will not stop and we will overcome. You have brought light, love and understanding to people with learning disabilities far and wide and to many mothers and families. And you have connected us and made us stronger. Thank you.
I often wonder just how much power our Ministers have. Are they really in control of the departments they run? How much power does Mr.Hunt have with regard to the running of the NHS?
Mr.Hunt can see how much pain and needless suffering is being inflicted on certain groups of people in our society by the culture of ‘could not care less ‘ in the NHS , namely people with LD and mental health problems. He should be kicking out the perpetrators and bringing in people who care enough to stop this happening any more.
They change Minsters, like they change coats.
You are right Pauline, whilst Jeremy Hunt, is a representative and spokes person, he is told what to say, and do, by the government.
And, we have all realised by now, what this,and previous governments’ policies are in respect to the autistic/LD/Mentally.
Shut them up with drugs, and lock them up with more drugs for life, supervise their incarceration, and tick boxes, and ensure all is unaccountable, and unseen.
Now, it is getting even worse, as they have realised, they, can also make huge profits from the LD/Autistic for doing tis, for private investors.
And Finola the government is told what to do by the huge corporations that financially back them. It would realy interesting to know how many policy makers in the government, NHS and Social Services that have shares in or links to the companies providing outsourced care to the NHS and social services. The knowledge could be quite an eye-opener.
In news today charities/voluntary organisations must not use their government funding for lobbying?
As I understand this, from the broadcast, this means no campaigning to change government policy on cash obtained from government.
How can they in reality differentiate this Public funding from donated cash or any other kind of revenue or capital income. Apart from on balance sheet. I may be thinking beyond the facts, here, but could any of the big charities or service providers called charities with government contracts,have set this convenient ball rolling? Surely not?
This is rot.
A charity is allowed by law, to use 50% of its funds maximum, campaigning on matters that will help their cause/purpose/beneficiaries, without risk to loss of their charitable status.
It is only when, they go over this 50%, political activity becomes more than ancillary to the charity’s purpose, and makes them, not a charity, but merely a campaigning organisation, or pressure group.
All charities campaign, NSPCC, Womans aid have heavily influenced legislation like Childrens Acts etc see my article ‘Charity Matters’, in the New Law Journal on net by googling my name.
This is a veiled threat to stop charities campaigning on these issues, and by charities, as an excuse, as sadly charities are mainly funded by the government and push their policies, and often as with NAS gain from them.
I
Trudy nothing surprises me anymore. You could well have hit the nail on the head. If you think about it Trudy they are definately not going bite the hand that feeds them, are they?
Pauline, if you want connections of government with corporations look at this link http://socialinvestigations.blogspot.co.uk/2012_05_01_archive.html
This is a political issue, with many vested interests, so we need the not vested interests Lords , civil servants, and the labour party, and anyone important with a conscience..
It looks as though every corner for challenge to current Political agenda is being buttoned down ? Are looking to close down challenges from the Lords. Now appear to be giving ultimatum to charities. Speak out and we cut you off ?
.
Here is the link, referred to by me in my comment on the fact, charities can get involved in political activities and campaign to change law on issues relating to their charity http://www.newlawjournal.co.uk/nlj/content/charity-matters
Finalamoss
Do local societies, Mencap for example, get funding from National office or State, or do they have to raise the income to survive by local fund raising? I am aware that local Societies pay an annual levy to National, but is it all one way ? I am aware that National has provided satellite offices and National staff to localities/Counties. But any does any cash from National Society purse go, annually say, to the local societies who seem to do most/all of the actual support ?
Sadly, it is not allowed to attack charity, and, this is what they hide behind.
If you attack MENCAP/NAS, you are disrespecting the disabled, but the irony is, that, by their use of their funds are doing this.
If you saw the front of the Sun, on Thursday, a 6 million pound payment is given each year to Age UK, from an energy giant for pushing expensive tariffs on the old.
The state, and fund raising, provides money to MENCAP,see accounts, and it is up to them how they distribute this money.
You can check out their Trustees expenses, and higher salary earners on the Charity Commission website.
The structure of the voluntary sector, in the last 10 years, has been one of big is best, smaller individual independent ones, have gone to the wall, and been subsumed into one big cabal charity with sub organisations.
These large organisations, put their organisation first, and are, what can only be described as, cultish.
Charity’s PR budget is big, their media image very important, as they become an engine for fund raising, often in the guise of various campaigns.
Money raised, is largely recycled to management, administration, trustees expenses and fund raising first, I think this is what is meant by ‘sustainability’.
Whilst any actual help, is provided as cheaply as possible, by volunteers if at all possible.
So,they are run on a commercially aware basis, albeit profit is recycled.
They also, as with NAS, utilise government funding for the government policies they have campaigned for, a prime example is away from home supported living, which has now via Carers Act also created a huge training industry.
NAS like MENCAP, then set up the training colleges, and independent living provision to benefit from their own campaigning, so there is a clear conflict of interests.
NAS residential schools, claim huge sums for their provision ie £177,000 tax free in 2007 for a 52 week placement read my blog posts.
I remember cheekily, asking a new Asperger group collector in Sainsbury’s, what they would do with the money, they were a new off shot of the local national autistic society.
She handed me the standard leaflet, with the standard fare ie duplication of what the local NAS did, ie coffee morning for parents ( couldn’t attend as no support ), phone help line, and, half a day holiday club day centre but limited access.
I told her my plight, and she said they were unable to do much, as they had difficulty getting volunteers.
I gave them £2, they’d already had half a million from my daughter.
Charities, also link in with Universities, who then, get students to support disabled/autistic, as placements ie autism buddies, students pays 9,000 per annum top up fee for these placements ie to work for nothing, but again, no respite, as they cannot be left alone with buddy.
Don’t worry about typos, I’ve never even tried an Ipad……..
I still believe “he who pays the piper calls the tune” except when it comes to our funding of services, it seems!! Maybe we need to use ballot box more?
Finolamoss
Sorry typo on your name, new I Pad x.
Old lady dodgy finger
Still on gas here so well done on new Ipad. And thank you and LB for bringing so much injustice to light! Stigma hides far too much! SHINE ON! At least there is more talk of improvements now we just have to get therm to actually DO something! How true -quote by Stephen Dalton – a former NHS Chief! :‘Government rhetoric about prioritising mental health does not match the reality’ Was sent this….you may have a subscription to HSJ Believe its Latest article by journo Shaun Lintern http://www.hsj.co.uk/home/lord-crisp-money-and-beds-are-not-the-answer-for-mental-health/5082595.article Among other things:The commission’s report said: “Access to acute care for severely ill adult mental health patients is inadequate nationally and, in some cases, potentially dangerous. There are major problems both in admissions to psychiatric wards and in providing alternative care and treatment in the community. These two sets of problems are intimately connected and need to be tackled together…
Hope its a helpful ref. xx
I fear, the government, is not prioritising ‘mental health’, to improve it, but to maximise profit, from it.
Mental health services, are becoming increasingly privatised, and already result in huge profits for providers.
The boss of St Andrews Healthcare, earned £375,000 per year 2011/12, all tax free , as mental health can be charitable.
And, was paid, £725,000 on severance. Check out the huge sums paid to the other executives.
https://finolamoss.wordpress.com/2015/08/01/st-andrews-healthcares-recycled-income/
How was this profit made?
From the NHS, sending a wide range of mental health sufferers , from all parts of the UK, to Northampton, for more efficient, private profit albeit recycled, care.
These included inter alia, basic Alzheimer sufferers, brain injuries, the autistic, and the newly created mental health, the Learning Disabled.
https://finolamoss.wordpress.com/2015/08/23/why-are-mental-health-patients-herded-to-st-andrews-in-northampton/
This type of provision, first, often under the MHA, may then lead to, a more permanent type of, for life provision, under the MCA, in independent/supported living.
Like the 80 bedded people factory, being built in Tyneside http://www.carehome.co.uk/news/article.cfm/id/1573453/four-million-pound-supported-living-centre-to-create-more-than-100-jobs
This supported living provision will, have its own specialist hospital, which have, perfunctory checks via nurses, and drug prescriptions via a psychiatrist, all owned, and paid for, by the supported provision provider, with a conflict of interest, and, an overriding duty to make profit.
This is why, as you say,
’These two of problems are intimately connected and need to be tackled together’
And why , ’There are major problems both in admissions to psychiatric wards and in providing alternative care and treatment in the community’
I share your concerns and believe psychiatry is being sold off. I agree “how was this profit made”? I have been asking Twitter same question for weeks http://www.independent.co.uk/news/uk/crime/andy-weir-bullying-case-nhs-boss-leaves-with-170000-a6734776.html! If psychiatry is real then it must be respected by earning its stripes…..not abusing its clients!
Please may I use your links on Twitter ……I feel the debate needs to be widened!
Please do. I would be more than delighted. Sharing Information is important.
I feel, and, it would appear from the desperate treatment of some in St Andrews patients, that the industry/ profession, are too close to pharma, and profit, and/or are into magic bullets, over from USA.
As described in Anatomy of an epidemic by Robert Whitaker.
If on Twitter follow me please @JoinedU1 Your blog comments are being challenged. Of course I am still asking where profit comes from?
Am already following you. Best Wishes, Finola
Appears, I am already following you on Twitter. Best wishes, Finola
Comment: “I know this hospital very well.I hope the revelations of salaries etc do not harm the work done here in any way.” so I have asked THE question!
Next comment is “@JoinedU1 no I can’t answer these kinds of questions.My concern is the excellent work done there and that it continues.”
I have said am always happy to read of excellent NHS work!!!
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