Panorama - Learning Disability Hospital abuse

[BakeliteBelle]

I know it is on AIBU, but why no debate on here? Did anyone watch it?

I forced myself to watch it because one of the factors in abuse of people with learning disabilities is the fact that good people who care, stand by and do nothing because they can't bear to believe it is possible.

I cried watching it and feel so utterly distressed that as my DS reaches 18, I won't be able to care for him at home because he is too challenging, but I can't bear the thought of what might happen to him away from us...

Too, too distressing. I want those bastards to be done for torture and find out what it is to be hurt and bullied and stamped on themselves.

What the fuck are LA's funding learning disability hospitals for anyway? They were meant to have closed years ago - why on earth are private companies receiving funding to open new hospitals? It beggars belief.

I won't sleep tonight

Yes direlahere - the response of the care commission etc was beyond pathetic. There does seem to be a sweeping under the carpet mentality. All the talk of there being a 'misjudgement' in not responding to whistleblowers was simply horrifyingly inadequate. What the hell were they thinking? They of course should be in the dock too.

completely agree, transparency and accountability............nice words but in reality?

In reality pigs might fly....
It is all so depressing.
Obviously so much would need to change including the type of people becoming 'care workers'. [I know there are good carers but those witnessed on panorama seemed to be 'inadequate' people entering an abusive regime. I know I probably shouldn't use the term 'inadequate but ..there you go].
I have also seen good and bad practice in supportive 'care in the community'. [In my ignorance though, I never dreamed such horrific levels of abuse could possibly happen as witnessed by panorama].
So much needs to be done but is there the political or social will to do it?

I blew the whistle. I don't regret it, but have to say, it was a big part of why I gave up nursing, in the end. I'd been a staff nurse for some 10 years, then a junior and then a senior sister. However, when my ds was little, I worked part time nights, in a nursing home for elderley care. It was typical of many. Lack of staff, untrained care workers, too many agency staff, management that didn't listen.

A patient died in dreadful circumstances. I reported it and the nurse in charge, for what I and others considered abuse and neglect. Everyone on my shift was "with me".........until I actually made the written complaint. Then, a living hell descended on my working life. I was ostracised. MY abilities were brought into question. I'd get letters from the matron asking me to attend meetings about very trivial things and when I did attend I'd find the meeting was me, Matron and the home owners with their legal team in tow. I think they just wanted me to leave. I spent 18 months being "punished" for opening my mouth. Eventually, the nurse in question was sacked. Care Standards Commision reprimanded the home and individual senior staff. The nursing union (RCN) were supportive at all the meetings but really, I felt very very alone.

I watched the Panorama programme. I wonder how these vicious thugs will be punished? I sincerly hope they serve a prison sentence and some "justice" is metered out at that point. It was shocking, sickening, incomprehensible that the people charged with their care, were challenging these young adults to "take them on" in some kind of fight. What kind of sick mind does that? I too wonder about my own son who is so very vulnerable.

With the prices these homes charge, the staff should be (mostly) trained staff with a background in psychiatric nursing. Though unbelieveably, the qualified staff seemed to join in the abuse . Or walk away from it.

Wendihouse - thank goodness you did what you did but how awful the afermath/ attempt at coverup etc... and how predictable.
As you say those who stood by/ looked on as 'team leaders' etc also culpable in panorama case. I hope all has gone a bit quiet because of criminal cases in progress not wanting to be compromised.. hope not being 'forgotten'..

I was wondering about how quickly it's gone so quiet too 2BoysTooLoud, perhaps we shoudl try to keep the subject alive on here at least!

I agree with you that there is a need for a different type of policing and previously posted:-

....... but if those agencies set up to monitor and quality assure such settings are so poor and they ignore the concerns of whistleblowers, does there need to be a non statutory (perhaps charitable) organisation with a membership including those cared for, carers and some transparent professionals - whose purpose would be to monitor and record concerns and work with, or if need be, apply pressure to those in positions of power to act or at the very least investigate concerns?Maybe such an organisation already exists?

Having worked in a secure hospital as a nurse previously I absolutely have no illussions that this is required to protect the most vulnerable, private hospitals run on a bussiness model are not going to police themselves and the regulators seem less than keen to act whe required.

I agree zzzzz that supported living in a home where people have their own tenancies is the way to go. There are Independendent living schemes even for those who require 24 hour intensive support. Though even here I find quality of care is variable and some people have fulfilled lives in 'their own homes' and other support schemes look good on paper but do not live up to promises. How to monitor support is crucial. As zzzzz says life is for fun times and day to day living that most of us take for granted not just meeting basic care needs. Of course what panorama has exposed is criminal abuse but it will not be an isolated case.

Attitude of support workers is crucial. Respect for the people with learning difficulties they WORK FOR is paramount. People are made more vulnerable if those who should be supporting them treat them with at best disdain at worst what we witnessed on panorama.

Institutional living can take place in the state or private sector. Things need to be turned upside down ie power stems from those requiring support. People with learning difficulties will need more support in Independent living schemes/ direct payments to their own staff than say those with physical disabilities alone.
There are people who do have good support and live their lives with respectful support. How can this become the norm?

zzzzz I really feel for you that you wish to outlive your son. You are not being pathetic. You want the best for your son and the images on panorama are terrifying.
I think some of your ideas are worthy of some thought. I can't imagine there was much encouragement for parental involvement in that hell hole hospital. Parent Governors? Community Governors? ..... Why not?
Reviewing assessment procedures/ monitoring and who does them is essential.. Involving people who actually do CARE seems worth considering.

I have constant anxiety that I was "old" when I had my ds at 38. I'm 49 in two months and he's just ten. He's an only child, too.

I've worked out that if I live too 88 he'll be my age now when I leave him.

Until then, if possible, he will stay with me, where I can love and protect him from a world that's scary and bewildering to him.

But who will do that when I'm gone?

Support needs to be support families feel happy and safe with. This is a huge issue that needs to be properly addressed.
It is heartbreaking that people are so understandably scared of the 'care' system in this country.
How as individuals and a society do we address this issue effectively?

zzzzz like others on this thread I was shocked hospitals still existed in Britain for people with learning disabilities; I see no place for them...

After a glass of wine I will speak no sense now.

Good night all. xx

I would like to see the role of Learning Disability Nurse reinstated, and brought back in line with mental health and general nurse training.

Not the old-style, institutionalised hospital nurses, but a new breed of well-trained specialist learning disability nurses, with a three year training and a belief in the social model of disability, plus challenging behaviour/communication training and expertise in all aspects of care that are relevant to people with learning disabilities. There are a lot of shitty old nurses who date back from the institutions and a lot of poorly trained unqualified workers. Who are the new breed of movers and shakers in the learning disability world? We need people with passion and a desire to make things better and a willingness to undertake a thorough training then go on to lead teams. Placements must pass muster.

Supported Living - I worry about this too. I believe the CQC don't even inspect supported living schemes...is this true? I can't imagine anything worse than my son living on his own in a flat with a stressed worker who gets hit by him for the duration of an 8 hour shift. Bearing in mind I want to thump him sometimes and I'm his mother and I love him, what would that do to a worker with noone to hand over to or do a 2:1 with? He needs a staff team and 'relay' caring. For children like my son, the care home set up is good in some ways...as long as it's a good care home.

I think that supported living can work if there is a consistent support team with support for carers too. I think isolation for both those supported and carers is when things can get stressful and dangerous. You can be in your own house in the community yet still be isolated and vulnerable to institutionalised living. Having family around or being supported within the area you were brought up in helps I think.
I have seen good situations and bad with supported living. The worst can actually look good on paper but be offering 'care' that just achieves the 'bottom line' -being in your own home. That is not good enough. Also if you have ever changing staff traipsing through your home and no life outside your 4 walls it can be like a prison.
Again good situations stem from well supported respectful staff who see the person they support as the 'centre' and their wishes paramount. In short carers that actually care.
As for inspecting supported living it needs to be done acknowledging someones home is not an institution. It needs to be done in a sensitive but thorough way checking a persons social/ physical / mental health etc needs and wants are met. It needs to check whether a place is a nice homely safe place to live. I am not sure these types of checks are done effectively or at all. [Not working at moment/ last few years so not on the ball].

2Boys, I am struggling to see the benefit of Supported Living over a care home yet.

The care team in a SL scheme could be as good or as bad as a care team in a care home - it seems as if the whole thing is the luck of the draw as to which care providers operate in your area. Some care homes are 'homely' too. Like you say, 'care' can be institutionalised - or abusive - in a person's own home. Add to that the possibility that the person lives alone and has completely unmonitored 'care'.

I know Local Authorities are favouring SL because the costs are lower to them, but I also know SL is not happening enough for people with more high care needs so SL cherry picks, leaving those like my son...where?

I do see what you mean BakeliteBelle. You are quite right of course that there are homely well run care homes. [Hospital living does not sit easy with me though].
It also worries me that supported living is 'the cheap option'. That does not bode well for people with high support needs and is simply depressing.
Oh I don't know BakeliteBelle.. I really don't.
It should not be rocket science to provide homely, safe, respectful care to vulnerable people - but it seems that it often is.
'Luck of the draw'.. it is not good enough..

Would you say that in principle a supported living model of care 'puts' the person receiving support at centre? What I mean is support workers/carers working primarily for person receiving care rather than organisation first?
Obviously what happens in reality is what counts.
The problem is ideals often get swept aside/ become mantras that are not really followed.
I agree zzzzz -'the more "in" the community you are the safer'. Knowing neighbours/ local shops / people in the pub etc. People dropping in etc....

'if your needs can be met in your home with support then they should be'....There should be no cherry picking. Supported Living should be rolled out for all and done properly.

The trouble is actually finding a home for DS. I can't manage him living with us as he is too challenging, but I can't identify housing unless a care provider sets up supported living accommodation that will be set up to meet his needs. That isn't happening as his needs are too high.

I can't afford to buy him a house; the Government in their endless wisdom have changed the rules so shared ownership for our children is no longer an option.

I can threaten to evict him when he is 18 and secure a place for him on the housing register. However, to prevent the aforementioned scenario of DS living alone with single care workers, I will also have to identify other young people to move in with him at exactly the same time, so they can be set up in a group home.

Option 2 - a really good care home - would be much easier unless care providers start rolling out Supported Living for everyone.

Hi BakeliteBelle,
-Are you allowed to apply for money to set up your own 'support package' for your son say in a housing association home? [Direct payments?].
-Is The Independent Living Fund still about? [Sorry if I am talking crap - out of the loop/ out of date as not working at mo. Background is social care].
-Maybe some form of Trust could be set up for your son if you can access money?

• Or as you say a good homely care home/ group home that you and your son feel safe and comfortable with.

2Boys I believe this Govt has got rid of the ILA. George Osbourne fucked us over last year by getting rid of the ability to do shared ownership here. He could get on the housing register and get a two-bed flat - one bedroom for him and one for the carer - but I have stated before that this is my nightmare scenario.

I have no money to set him up in a house or make a trust and there are many people like myself who have no means to make Supported Living happen for our children, unless the local authority commits to encouraging good care providers set up Supported Living houses and actually assist in the purchase of property. I live in an area of high house prices, and it doesn't look like it will happen.

zzzz if I had £3500 a week, I could buy a bloody great house and extend it and keep DS at home. Sickening