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July 26, 2013

It has been the craziest two days ever. Since the BBC published my blog post, I have been quite overwhelmed with the reaction.

How about these few stats:

Number of views of BBC page: 201,000
Second most read page on the entire BBC website on 24th July, after the Royal baby
Number of views of my blog: 35,349
Number of new followers to my blog: 560

I want to thank everyone who has commented either here, on the BBC, on Twitter or Facebook. The responses have been almost universally supportive and it feels great that I seem to have struck a chord with my piece. Comments have come from all over and it has been particularly heartening to see all the people who work in the social care field express their frustration and support.

It has led to lots of offers to write or speak at events. It has also led to some personal offers that have really choked me up – offers to help with when we move; offers about helping us get to Somerset.

Steven’s person centred plan drew a lot of comments and I’m pleased to say that since Steven was released from the positive behaviour unit, we have done all six things that he was denied back in 2010.

The incredible reaction has convinced me to press on with launching the Steven Neary Foundation. I mentioned the idea a few weeks back but have had to put it on ice whilst the eviction is taking place. Once we’re settled, wherever we end up, I will be going full steam ahead.

There are lots of new followers who have asked me questions about the history of our relationship with social services. The biggest event was Steven being unlawfully deprived of his liberty for a year back in 2010. Both Steven and I deal with the trauma of that awful year, 3 years on. If you want to read more about what happened, I’ve attached some links:

Here is the High Court judgement of Justice Peter Jackson about the events of 2010:

Here is the book I wrote about 2010 and the relationship between Steven and me:

Here is the link to the Facebook group I set up in 2010 to try and get Steven home:!/groups/459113487503689/

Once again, thank you so much for all the support. I had been feeling pretty battered by the eviction problem but have been so lifted by all the good people who have been in touch.


From → Social Care

  1. Emily permalink

    Don’t ever stop what you are doing. You will surprise yourself that you have the strength to carry on.

    My son who is 4 year old and ASD was adopted from birth. We didn’t know that we would be fighting for him 4 years down the line and making sure he has all the extra things he needs in his life. We always think that he was meant to come to us so that we can offer him every opportunity. If he had gone to a different family perhaps he may not have received the help he needed.

    Steven too is lucky that he has someone like you who will always watch his back, fight his corner and make sure he enjoys HIS life to the very full.

  2. Anon. permalink

    Mark, thank you, because your writing is profound, poignant and inspirational, and touches the hearts, and too often the bitter experiences, of tens of thousands of people throughout Britain, myself included. Last year I was precipitated in to ‘engagement’ (isn’t that supposed to be a joyous event?) with the Mental Health system whilst supporting a close friend with his suddenly and seriously ill teenage son. Within two weeks of the crisis occurring his father and I both felt as we were in some Kafkaesque nightmare of double speak, and at times even doubted our own sanity due to the care (pardon?) on offer, the Catch22 scenario of the boy being over 18 (and therefore his human rights taking precedence over his father’s rights to support him, despite his child being sectioned in a high security intensive care unit, 100s of miles from home), and the total lack of contact and consultation with senior MH professionals whilst in hospital, and afterwards. The denouement of the ‘afterwards’ is too terrible, too horrifying, and too traumatic to recount here.
    Wishing you continued strength, passion, grit and love. There are now 1000s of caring, empathetic mums and dads, brothers and sisters, friends of those enduring similar lives as yours and Steven’s, following and taking some comfort from your dignified, informative and critical words. Keep on keeping on, and Good Luck!!

  3. You deserve the credit, Mark. If, for nothing else, than being “brave” enough to put your feelings & experiences out in the public domain (or whatever the phrase is) Take it in slowly…….
    Well written and from the heart, it would seem to me.
    I think (for me) it touches on many more aspects of our society than only mental health….a society that feels more and more at odds with our simple, spiritual human nature…full of honesty, integrity, openness……presumably just as Steven is.

  4. Stacy Scott permalink

    It makes me so happy to know that Steven completed his “person centered plan.” It was most certainly “in his best interests” to do so. I loved your BBC post. Best wishes to you and Steven.

  5. I read with interest your blog on BBC ….. As an AS adult I can verify ‘care’ is the last thing on offer. I was only diagnosed in February 2010 [6 days before my 42 birthday with Aspergers] …. And 3 days too late to save my family from the family court system.
    I have been fighting more than 3 years to have my children returned to my care…. I recognise all the jargon you use ….. and my biggest difficulty is without a doubt ambivalent wording
    Phrases like ‘it would appear’ ‘could be proposed’ ‘suggests the following’ ‘may present as’ …… Speak bloody English!!
    Keep on doing what you’re doing …. you’re an inspiration to one and all

  6. Sally permalink

    Dear Mark, thank you for your blog which I’ve just come to. I have 3 kids, my daughter and son have autism, my son severely so.
    There is a great need for an expose of the weasel words used by services to cover up cutbacks and abdication of responsibility. Cutbacks are presented as blows for democracy with nice words like “independence” and “choice”.
    What is comes to is there is far less money and parents are asked to be unpaid social workers, accountants and payroll managers for the rest of their kids’ lives. There is no assessment as to whether we have the time, the desire or the ability to do what used to involve entire paid departments.
    The idea is that with lump sum payments the learning disabled will all leading fascinating lives-but for people with very limited capacity to make choices and manage money–and little or no ability to get about independently, the whole deal is a cruel nonsense.
    It used to be that the disabled only needed to get to to a day centre – from which interesting outings/training/services were provided. Parents could come in a see that things were well run and could put forward their offspring’s preferences for the schedule. A manager was in charge of the training and supervision of staff; there was legal accountability.
    Now there’s the closing of day centers and sheltered employment, to be replaced by being taken out by a shifting group of poorly paid , unsupervised and untrained staff-it is better to sit in a shopping mall for the rest of your life while a bored worker texts and ignores you than it is to have somewhere safe, inclusive and interesting to go. That’s independence.It also means services have no responsibility. Bored and unhappy? Your parents should have organised the day’s events better. Carer not doing their job? Your parents should have them followed! Ignored or abused in the outside world? Not our problem.
    I was at a meeting recently at which a toad from the council-no more polite word will do- brightly explained that they wouldn’t be reopening a popular day care centre for the disabled as pledged-but we parents could all pool our kids’ personal independence payments and hire and staff a hall ourselves!We calculated that a group or 100 PIP payments for the year would be able to keep such a hall going for less that a week .
    Finally there are vague aspirational phrases which sound nice but don’t commit the authorities to providing anything. the disabled “should” have ABC and we will “work towards” this. If there’s been a service failure then “lessons will be learned”.
    Mark! Keep writing! We need you!

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