Was I unreasonable to send this email?

[SukiTheDog]

Below is an email I sent to Mark Lever, CEO of the National Autistic Society. He’s been in post since 2008. When Winterbourne View was exposed by the Panorama program the national reaction was one of shock and revulsion. And yet, the NAS, renowned charity, ignored whistleblowers and allowed cruelty and abuse to continue at Mendip House, one of their homes for vulnerable adults with autism. Why are “we” so cruel to those who are vulnerable and need our kindness and compassion? Why is the care system so flawed? Why do we still pay low wages and employ people who who probably aren’t fit to look after a cat, nevermind frail, confused and trusting adults?

I want someone to be sacked/jailed/exposed/pilloried. Am I unreasonable? Am I over emotional because I have a son with autism who is himself a vulnerable adult? Are we all just wasting our time because we, the human race, don’t give a shit about those less fortunate?

Here it is...

Dear Mr Lever

I doubt you personally will read this correspondence. Someone will but probably not you.

I am a parent of a seventeen year old young man who was diagnosed with autism, aged four. For many years we were told he had “mild” autism though more recently, we are told that in fact, he has severe autism and is considered a highly vulnerable disabled adult. Our lives have been a constant struggle; for services, education, gaining a Statement, going forward to an EHCP, DLA, PIP. All of it, tough going with little support.

This in itself has caused huge stress but perhaps the singularly most distressing aspect for me, his mother, has been the question “what will happen to this vulnerable adult, my gentle and kind boy who is utterly trusting and seeks friendship, when I can no longer care for him?” There appears to be little kindness in the world but cruelty to learning disabled and vulnerable people is particularly shocking. Winterbourne View shocked the UK. That old adage...”we must learn from this; this must not happen again” was trotted out. So how on earth can the National Autistic Society have allowed Mendip House to happen? You were told in 2014 what was going on and yet those highly vulnerable people were subjected to a further two years of abuse and cruelty. You have been neglectful in your duty in the worst possible way.

I have always supported the NAS. I have used the Helpline in my darkest moments. How can you, our largest and best recognised autism charity reassure your former supporters that this will not happen again? You were in a position of providing a safe place for these autistic adults. You failed, miserably. Shame on you as an organisation and on you Mr Lever personally. This happened on your watch. Presumably you are paid highly as the head of this charity and yet when you were needed, you looked away. Shame on you.

Yanbu...I just googled about Mendip and it's appalling.

This is near where I live, a friend worked there years ago and said it was horrid, but it was the patients that were violent and after doing Health and Social Care, I’ve realised the ONLY reason these clients were violent was because they weren’t receiving adequate care. I’m only 20 so was too naive to put two and two together as was my friend. Horrendous and everyone in our area is appalled

Yanbu. Mendip house is the reason my I will insist on looking after my son until the day I die. Even my mother, who had, for years, nagged me to get him into residential care, has changed her tune.

I’m totally with you on this and like you my ds in 17 nearly 18 and is in the process of transferring to adult services he has asd with severe learning difficulties and is non verbal.

I feel much the same and at times worry for my son when we’re not around to care for him, we’ve started to look at supported living for him in a small property with at the most four other young adults most definitely not the larger institutions that have aired on tv.

I know that I have to trust others to be kind and compassionate in their care for him and largely there’s an element of trust from us as his parents, but for an organisation so well known as The National Autistic Society to of known of the abuse and cruelty to these vulnerable young adults is disgusting this is while I’ve cancelled my membership to them and sincerely hope they get their house in order as someone needs to held accountable for this.

There are good homes, they aren't cheap and unfortunately it seems to be a race to the bottom at the moment with LAs not being willing/able to pay for good care.

Why do we allow often untrained “care” staff to do this work? It shows our lack of care, as a society, to vulnerable people. From the description of what was going on at Mendip House, these carers we’re bullies. Sadistic. How could you enjoy dishing out this type of cruelty. Probably the type of people who mistreat animals, for a laugh.

I still think the NAS should push for prosecution. It’s as if it doesn’t matter because it’s only the disabled.

Jesus Christ. I am utterly sickened. What is wrong with people?

Yanbu to send that email. Heads need to roll.

Your frustration and concern is absolutely not unreasonable but your email is pointless. It's a rant, you make personal attacks, and nothing constructive will come of it. If you want a valid feedback then take out the emotion and stick to facts, ask questions about how they're ensuring this never happens again, about how it was allowed to happen in the first place.

At best you'll receive back a message of platitudes, at worst they'll have blocked your email for being abusive. I genuinely do understand where you're coming from, but there are ways of taking action for change and this is not it.

Rather than complain about the lack of trained staff, it would be more constructive for people to train to be care staff themselves. There is a shortage of people who want to be carers, because it is hard, often thankless work. I'm not saying the criminals shouldn't be punished, but it's a lack of people willing to be carers that allows bad apples to fall into a job.

"Silent Witness" touched on this issue a few weeks ago. I know its a drama but it did high light the abuse which which is endemic in the care industry.

YANBU.

Very good email Sukey. YaNbu!

Oh this is just awful I just read the Safeguarding Adults Report issued on this online and it just horrible. Those poor people.

Bombardier you are absolutely right. I don’t expect to hear anything in return and a three line platitude-full reply may, or may not arrive. I am emotional because I am a mother and this could be my son. I’m not a campaigner nor a politician. I’m just his mother and knowing this is still allowed to happen is heartbreaking.

In our schools we allow bullying of special needs pupils. Ofsted and schools will gloss over it; they’re so scared of losing their “outstanding school” badge that abuse is swept under the carpet. It’s seemingly ok to laugh at a person in the street because they walk differently or are a little unusual for the “norm”. I know all of this because it happens in everyday life, every day. However, in a care setting with people assigned to look after and be the patient’s advocate, we MUST demand more. For all our sakes. It could be any of us, in a care home, being silently abused and wishing it would stop but having no one to stand up for us.

I’ve read all the apologies from NAS and Mark Lever. How sorry they are; how they let their clients down; how lessons have been learned and it must not happen again. A whistleblower contacted the CQC but it wasn’t investigated well and abuse continued. Hester, Yes...heads should roll, yet even the perpetrators have gotten away with it, so there’s no chance of anyone at NAS being held responsible.

And why don’t better quality people train as carers? Because the pay is poor, the hours are poor, it’s the kind of job many take when there’s nothing else. You’d think that with us all living longer and more care settings being required, there would be better training and highly qualified people in place. I don’t think it’ll ever happen.

YANBU to be appalled and upset by what happened at Mendip House, at all. It shouldn't have happened, at all, ever.

However YABU in your attitude to carers. I've been a paid carer and it was the hardest job for the lowest pay I've ever had. There's currently a thread on AIBU about a carer who is unsure about whether she should be working 15 hour days, FFS.

In answer to a couple of your questions:

Why is the care system so flawed?
Funding. Our local authorities and NHS are financially crippled. Council tax rises have just been announced and people are in uproar and yet, it's needed to pay for decent quality care. If funding is limited, training is limited. If training is limited then staff won't be able to cope with situations they're in. They'll leave. They'll get jobs in supermarkets, which pay better and offer much more job security.

Why do we still pay low wages and employ people who who probably aren’t fit to look after a cat, nevermind frail, confused and trusting adults?
That's a really offensive thing to say. I understand that you're upset but this attitude towards carers, the vast majority of whom are struggling financially on minimum wage, who work long hours but who genuinely care and love the people they support, is disgusting. If you want to know why people don't want to work in care, then this attitude is part of it. It's a hard, hard job for very little money. See above.
I've been attacked at work, I've come home smelling of urine and faeces with clothes that need washing, I've gone without breaks because I've been helping the people I care for to have meals. I was bloody good at my job but I couldn't do it long term.

I understand that you're angry but if you want to change things, get involved. Writing angry emails changes nothing, even if your anger is understandable.

Get involved with local charities on their boards or on their service user panels. Petition your local councillor and MP for pay rises or subsidised training for carers. Defend council tax rises. Ask how you can help and how you can get involved.
Be proactive, turn your anger into something useful, but please don't tar all paid carers with the same brush. All that does is undermine respect for the ones who do their jobs well.

I don't think the OP meant to tar all carers with the same brush, I think she was saying that the good ones should be paid and treated properly for doing a difficult job well, and the bad ones identified and weeded out.
Fwiw, I don't agree with Bombardier's comments. I don't think your email was at all abusive or offensive, it just didn't hold back. And, yes, it's emotional, but this is an emotional subject for you, and I think it's important that Mark Lever is confronted with the reality of the impact of this on the people involved. That's why you're writing to him, it isn't a detatched professional assessment and it doesn't need to read like one.

Your frustration and concern is absolutely not unreasonable but your email is pointless. It's a rant, you make personal attacks, and nothing constructive will come of it. If you want a valid feedback then take out the emotion and stick to facts, ask questions about how they're ensuring this never happens again, about how it was allowed to happen in the first place.

I agree with this. You should send the letter, but change quite a lot of it to make it factual and keep the emotion out of it.

People get "carer" jobs that would get a knock back for night fill in asda. It's so hard to recruit to they will take anyone. We are all guilty - people will pay 30 quid an hour to a tiler yet expect carers to work for minimum wage. It's a disgrace.

How's many people want to go to work each day to be hit, punched, slapped, spat at, scratched, gorged, kicked, have things thrown at them etc? That's the reality of a lot of support workers. This is why more people don't work in this environment. It's hard, it's physically and emotionally draining, and yet they get paid minimum wage for it.

Doobigetta, you’re right. Many carers are excellent and should be nurtured via training and that training qualification reflected in pay. Should be. I’ve worked in the care sector for many years. I was a whistleblower in my last job and had 2 years of hell, with just about everyone I worked with, turning against me when the sh*t hit the fan. What we’re talking about here is “a group of men with a gang mentality bullying and abusing residents”. This type of person should not be in the care sector with vulnerable clients under their care. No amount of training and pay increases will change this type of person. So no, I’m not being disrespectful to carers but I have been in situations where I couldn’t stand by and see treatment happening, and not take it to the authorities. In my 26 year+ career as a volunteer/care assistant, student nurse, qualified nurse and eventually senior nursing sister I did see care provision that I wouldn’t leave my cat in. That is not an exaggeration and I will not apologise for having written this. I’ve also seen wonderful carers with kindness and patience in their work. I have lobbied my MP to the point where I think he is sick of me; I have tried to effect change and yet....it still goes on. And on.

I wrote as a mother. I am a motherof a SN son....there’s loads of us who know, deep down that when they’re gone, our child may need ongoing care. I don’t apologise for my emotional state. Remember LB? The young man with epilepsy and special needs who drowned unaccompanied whilst in the bath? His mother (rightly) gets emotional from time to time. I don’t think I need to defend myself for being emotional.

I had an email reply from the NAS. It was all one might expect it to be, under the circumstances. But, to have identified a Winterbourne View-style system of abuse in 2014 and not to have turned the place over, is inexcusable imo.

So, thanks for acknowledging my email NAS but your reputation is in shreds as far as I can tell.

I am very concerned over the behaviour of NAS. I wrote report back 2014. All that I am posting can be checked via their accounts and AGM reports available online. You just got to join the dots. Mark Lever was on £140k pa. NAS help 1000 people directly on the ground but profess to reaching many more through their website. They employed over 3000 with support workers on minimum wage whilst over 60 senior management receive over £60k pa. They received back then over £81million pounds from DfE for their residential schools (one was closed last week for abuse). They started as a children’s educational charity but appear to have mission crept to include adults. They employ a team to permanently lobby MPs in Westminster for funding streams and they purchased a very expensive HQ in North London close to central Govt. NAS are a slick operation biggest 3rd sector for Autism, many bid writers clamouring for money.. Are they a charity? Super Charity or Quango? All I know is they’ve never helped anyone I know in fact they’ve ignored them whilst knowing abuse was taking place. As for Government..... they know but ignored the facts. Abuse is abuse right? Seemingly not it’s happening over and over again. www.devonlive.com/news/devon-news/autistic-people-care-forced-crawl-1183547