Jane and Peter; No voice, no choice… just put up with it

The second in this series of ‘Tales from the community’* features Jane’s fight to try and get her adult son’s care provider to engage with her and involve her in decisions around his care. Peter moved to a shared home with 24 hour care in 2001. Jane was excluded from decisions around his care. A Best Interests meeting was held in 2009 in which it was agreed that Jane should be involved in decision making for Peter. Two years later, still excluded, Jane applied to the Court of Protection to act as Peter’s deputy in decisions around his health and welfare. This led to no change on the part of the provider who continues to exclude Jane.

Jane then attempted to change Peter’s provider:

“So last year in December, I applied again to the court and somehow the provider and commissioners persuaded the Official Solicitor that as my son was autistic, he would not cope with change. So he had to stay BUT I had yet another court agreement saying everyone had to work with me on decision making as before.

Well here we are less than 6 months into this agreement, I have just found out that sometime last year my son had a new tenancy agreement and landlord which I knew absolutely nothing about. Also my son appears to be very short of money due to his benefit money being spent like water by staff over a long period of time, again without discussion with me.”

So what is Jane being excluded from? Here’s a couple of examples:

“From 2001 through to when I first took legal action in 2008, not one person involved me in contributing to Peter’s annual care reviews. A care manager told me later in 2010, “we did not know about you””.


Peter was rushed to hospital late one night, “supposedly injured due to falling from a seizure. No one told me about it until 9am the next morning. The staff member involved left Peter, who is autistic and without speech at the hospital alone from the early hours. He was left traumatised for a long time after this by being totally silent. He usually vocalises by “grunts”- poor man, I felt like I had let him down. No one spoke about this after. No enquiry, just pretend it did not happen. No voice, no choice… just put up with it.”

Jane has complained to the provider, to the local authority and to the CQC (the latter are taking forward Jane’s concerns, the former two are bouncing the blame between each other).

Jane ended her email;

“Sadly the money just runs out when dealing with these people, and quite frankly several thousands of pounds and two court agreements later they still can’t get it right.”

*These tales are presented without comment from me (which is proving harder than I thought). Names are changed. Other tales are also being told elsewhere… For example, you can read about Chris, about David, about Claire and Steven Neary. Here’s hoping that the public recording of these stories leads to some change, somehow. Positive tales are, of course, very welcome.

19 thoughts on “Jane and Peter; No voice, no choice… just put up with it

  1. “Can’t get it right”? Is anybody making any attempt to get it right? A young man without speech is left to rely on people who don’t even know he has a concerned mother?

    Adults with LD have as much right to reject parental involvement as any one else – but to have other people controlling their lives without any consultation is so wide open to abuse – and, of course, sometimes disastrous consequences – has to be wrong, and has to be stopped.

    I understand why the CoP is not keen on handing out Welfare deputyships, but surely something more like a Power of Attorney that allowed people some say in who they want to speak for them would be safer than the present set up?

  2. This is so distressing. I may not agree with every family member I meet, but I respect and value their views always. How can BIMs take place without the family present? It’s a principle of the MCA. My manager would freaking kill me if I operated this way.

    • I’ve linked to Mark’s site in the above post but there does need to be a better way of collating them all (and there are many..) This whole issue around capacity, autonomy and family involvement is something that needs to be completely unpacked.

      • Sarah Absolutely but how? A new web site or would that weaken Mark,s and yours. How does one run a big campaign without losing the essential personal touch it seems to me the press has to be involved. At least we are now out there saying what has to be said, but we need to be crying it from the rooftops

  3. Not sure but I wonder about a new website that has a campaigning aim through telling these stories and making visible the limitations/constraints/abuse inherent in the system, while also linking to existing sites. Trouble is, there are so many sites, like you say, it’s how to gain and maintain interest. The telling of stories on existing sites like Mark Neary’s and Who by Fire and cross linking them is a good start but more is needed.

    There is also a gap in helping/facilitating people to tell their stories online when they may not be comfortable with social media. A few parents have contacted me to ask where to start. Some people are comfortable telling their own stories, while others less so. I’ve chatted with INQUEST about this also in relation to unexpected deaths. Sigh.

    I’ll chuck it on the pile of things to think about at the end of #107days though I’m sure there’s a lot of people with ideas. @katebielby was chewing over some sort of grassroots parents movement a couple of months ago.. [Completely not ignoring the irony that the likes of Mencap and the NAS were originally started as just that]…

    • I am absolutely ready to deal with the social media, and Martin too. But I don’t know how to network these days.You need to reserve all your energy for 107 days. Bythe way there was an article about you in Epilepsy Actions magazine. I found it disgusting. Another organization that has failed us

      • Good for you and happy to help in any way I can. Will revisit that article, I’m sure I read it but can’t remember anything about it. Epilepsy orgs have been pretty quiet. I was invited to go to some event at the House of Commons to talk about epilepsy and schools but they ditched me when they found out LB was at special school. Nothing to be learned from that for your mainstream school kids/teachers. Pile o crap as ever.

  4. I too feel that there should be a place for these stories. I’m helping Chris who us a young man with autism find his voice after years of institutional abuse and human rights issues. Currently we have a non publicity order to lift but after that we will be publicising his situation too along with the many other situations of what seems to families to be isolated harm.
    I feel Connors campaign has helped so much in getting these stories of violence out into the general public and provided so much support for others. There should be a place where people can upload their story. This could have links to the relevant authorities in their areas and CQC. If people do not wish to upload it can be anonymised for them. I think the power of the social media put people on their toes in these places and collects important data

        • Basically there was a previous very serious case and it went to court. For Chris protection it was stated that no photographs or anything that linked him to the case could be publicised. Now we have nothing good happening since that terrible case and further proven abuses by staff on top. He was hit by staff, spat at and sanitiser squirted in his eyes on several occasions. His mum knew things were going wrong again and at one point the whole family were banned from seeing him. This publicity ban is in fact working against him as he is invisible in this way. Is there a private email address that we can use, not to bombard you with information as we are very aware that you have lost your son so very tragically and this campaign is so rightly for his justice. Chris is still alive but in such an Inhumane place where it is unbelievable that people just walk away feeling it’s ok to leave him there. It’s opened my eyes to real indifference, violence and sadness that has left me not sleeping or resting properly till we get justice for all the dudes like LB.

  5. Narratives are powerful, and these gathered together are horrifying – but they need to reach the wider world of those who simply would not believe these things happen, and go on happening! Social media allows us to talk to each other – how do we get to those with the power to effect change? Would publishing and circulating in “hard” form work?

    • No I dont think so.I think we need either the BBC or a newspaper. 10 years ago I could network. Other idea when MCA comes up in Commons try and get a mention – although MPs are useless. This is frustrating it should be simple. And who has the power???????

  6. Agree about mainstream media – but how to attract their jaded attention? Recent documentary on Thalidomide was instructive. Refusing to shut up and go away? As for who has the power – well, those who don’t want to relinquish it! And maybe some who could be embarrassed into reconsidering?

    I don’t have the answers, But this campaign is asking the right questions and beginning to make itself heard.

    • How about taking our sons and daughters up to the House of Commons and letting them loose. Try it in the Court of Protection, all the offices of the SS, headquarters of Southern Health etc. I have a lovely picture of 50 to 100 of our dudes running riot. That would show them where the power was.

      • It would certainly make a point – but not about the arse-covering and bureaucratic nightmare of the “system”. I have got into the habit recently of reading CoP judgements. Sometimes (thankfully not all the time) it seems like judges are the only ones left who have total faith in the probity of Social Services and local authorities.

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