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About

The title of this blog, “Love, Belief and Balls”, was originally the working title of a book I was writing about my experience as a male counsellor working with male clients.

The book is still to see the light of day but I decided to use the title for this collection of random thoughts.

I am 55 years old. I am the father of a 24 year old man with autism. I work as a counsellor and advocate. I support Leeds United FC. I used to be a bodybuilder. I am sad that I will never hear a new Beautiful South album. I don’t like bananas. I get to speak at the most fabulous legal, social care conferences around the country.

My book, about the battle I had with Hillingdon Council to release my son from care and that went all the way to the HIgh Court is available to buy here.

In 2013, I published my second book: “Theres Always Something or Other With Mr Neary”, which is a collection of thoughts and experiences about life in the social care world.

I am very proud of my involvement in #LBBill – a movement that is trying to establish in law a few common human decencies for the disabled and learning disabled.

 

44 Comments
  1. Colin Wilson permalink

    Sorry if this sounds like a dumb suggestion, but there are too many three letter acronyms which may mean different things to different people.

    In a recent post you mentioned a DoL but this is meaningless unless you know the social services / DWP / court of protection type of stuff backwards – so while I might see parallels in another recent tale I heard of abuse of power, I can’t be sure my interpretation is right because of the acronyms šŸ˜¦

    …and I still haven’t figured out what a DoL is :-} (this might also be an issue for people with learning disabilities who need a clue to get them on the right track, i’ve got Aspergers)

    • Rebekah permalink

      A DoL stands for deprivation of liberty. I agree! There are barrages of three letter acronyms everywhere, education (It feels that students are expected to know what they mean) the police, the NHS (National Health Service) and of course social care. I have Asperger’s too.

  2. Steven Richards permalink

    I have just read your article in the Mind newsletter and wanted to let you know I found it very interesting and helpful. If you are interested I am involved in organising a conference for BIAs early next year and wonder if you would consider speaking about your experiences there.

  3. Catherine von Ruhland permalink

    I was ointerested to read of your battles with Hillingdon Council since I hail from that part of London myself and still regularly return (South Ruislip way). I was sorry to hear of the difficulties you and your son face. I am dependent on benefits myself due to chronic ill-health (kidney failure) and find dealing with DWP and claims etc, even receiving a letter from them is stress enough.
    You being in touch with the media is important, and I would certainly consider the same, and contacting my MP if I found myself threatened financially.
    Keep strong, and know that you are an inspiration to other parents of disabled people.
    All the best to you,
    Catherine

  4. Hi Mark

    i would really like to talk to you about the possibility of you coming to talk to us about lessons we can learn in regard to understanding the MCA and DoLS legislation? i have supported carer and user experiences on many occasions within the learning arena and know our audience could learn a great deal from Steven’s very difficult experience and how you managed throughout – i sincerely hope listening and learning from you would have a positive impact on the future. it would be great to hear from you in regards to your availability and whether it is possible in light of your caring commitments

    with kindest regards
    martin

  5. Claire permalink

    Thank you for your blog. I have a limited experience with adult social care (limited because they only came a fortnight before my husband was taken into hospital/hospice and never came out again – a joke I shall forever find unfunny) but your blog rings totally true with that experience.
    It also rings true with my experiences volunteering with a Job Club. I hear horrific stories about the DWP and ATOS week in, week out. It is absolutely disgusting what is going on and the more people who publicise it the better in my opinion. So all power to you, Mark! Keep up the good work and I wish you and Steven love and strength.
    Claire xx

  6. Tourer permalink

    Dear Sir,

    I work in the system and have done for many years. I entirely agree with your thoughts and frustrations. Everything is done to look great on paper and arse covering is a number one priority above all others. Personally I try to ensure the guys I work with have as much fun and a regular life as is possible and balls to the PC and mainly economy driven culture. In one post I was asked to carry cards with a phone number to call in case my client offended anyone when we were out! I refused of course and left shortly after, sadly the client never had that choice. The jargon is bloody ridiculous in the extreme and is meaningless and demeaning. The best of luck to you and your son sir and never give up for what is right and dignified.

  7. Hello. I’m project researcher for ReValuing Care Network (http://revaluingcare.net/). We’re trying to find new ways of thinking about and ‘doing’ care. We don’t want to be just ivory tower academics, we’ve all been carers ourselves in one form or another, and it would be great to include you. Would you do a blog for us? You’d be welcome to link to your books, which I am sure a number of people would be interested in (I’ve just tweeted about them). I teach mental capacity law and your case always gets always top billing! Although I’m sure you’d rather not have had to go through it in the first place. Also, you would be very welcome to become one of our members (which means you get to join in discussion forums). No cost, of course, we are totally legit. Hope to hear from you! Sue W.

  8. Hi Mark,

    I’ve been reading your blog and saw your guest blog this morning with the BBC. I found it very moving and interesting as to how people can feel denormalised simply by prescriptive semantic choices.

    I am actually a student journalist and would be very keen to speak to you more about autism and how it is perceived in society as well as from the point of view of the person in question.

    My email is mary.oconnor@nouse.co.uk, I would love to hear from you.

    Many thanks,
    Mary O’Connor

  9. Rob Johnosn permalink

    Hi Mark,
    Well Done!
    Congratulations on the BBC Article.
    http://www.bbc.co.uk/news/blogs-ouch-23423541
    200 plus comments by 11.00 am!
    I for one will not accept a piece of psychobabble from anybody ever again. I will insist on plain simple truthful language.
    I know psychobabble is the wrong word but I hope you know what I mean, I will try to think of a better word!
    Good luck to you and Steven.
    Robo

  10. Lorna permalink

    Dear Mark,

    Congratulations on your article:
    http://www.bbc.co.uk/news/blogs-ouch-23423541

    I’ve also been reading your blog.

    I’m the sister of someone with autism and learning difficulties. Dealing with social care throughout his life, particularly in adult services, has been a real battle for our family. I can really relate to what you’ve written.

    Our local authority liked to use the phrase “every adult matters” – it was definitely more like “every penny counts”.

    I really believe in the concepts of promoting independence and choice, inclusion and person-centred care but I feel like, in the hands of many health and social care professionals, they are just buzz words that have become totally meaningless.

    Best wishes to you and to Steven,

    Lorna

  11. Hi Mark!

    Fantastic Blog! I have been trying to find ways to express my frustration with the way we use jargon in the services and this is perfect!

    Thanks again! Your BBC article will be being shared at my next team meeting šŸ™‚

    -Robin; Canadian, Transitions Coordinator, and a gal who’s far too excited about finding your blog.

  12. Mark,

    Your story rings so many bells with me I’m the Head teacher at an all age special school in Loughborough. Many of our young people have autism – we work really closely with parents but the overwhelming worry about “what next” is getting worse. I would love to keep in touch and share thoughts with some of our parents of kids approaching leaving age (19).
    If that’s OK with you my e-mail is dthomas@ashmount.leics.sch.uk
    I think we do a good job by our kids and families – if you want to look at our website it’s at
    http://www.ashmount.leics.sch.uk

    Best regards

    Dave Thomas

  13. Hi Mark, just found your blog via a BBC news article. Looking forward to seeing you beat the system and expunge babble from your son’s life!

  14. James permalink

    I worked as a social worker in child protection, mental health and in adult social care for almost 40 years, always at the coal face level. I have never ceased to be dismayed at the ludicrous jargon that came and went over the years. Common sense often failed to prevail and extreme risk aversion was the management default setting, in some ways understandable but often punitive towards clients. Some social workers lacked self awareness to the degree that they could not see the negative impact and reaction that they were creating, all too often alientating clients and forcing them to respond in a hostile way which was then interpreted as rendering them potentially unsafe carers. A vicious circle. Compliance was valued when the natural reaction to intervention was anger. Clients fight their social worker at their peril unless they have the brains to move the fight out of social services control, putting them under scrutiny.
    On the other hand social workers have a very difficult job. Their every step and decision, every record, every assessment sits there in wait for them when something goes wrong. Then, with the benefit of hindsight, the management system looks to shift the blame downwards, the poor social worker’s work pored over to find fault and achieve this aim. Of course staff under pressure from high caseloads and massive levels of paperwork can rarely achieve perfection in performance and they are thus doomed to be sanctioned through internal disciplinary processes which are stacked against them from the start. After all management must make sure that the blame is pushed downward at all costs in case it reaches them. And so it has been for all time and ever will be. Sad but true.

  15. Fay permalink

    Hello Mark and Steven,

    I have no personal contact with social services, nor any experience with adults with learning disabilities but I have been totally absorbed by your log since I stumbled onto it two days ago. I have now read all the posts to date and, while I can’t say it was a surprise that local councils should be so inept, I feel angry that you and your family are so trapped by their nonsense. You are clearly right that they mean the exact opposite of what they say and isn’t is a crying shame that the ‘care’ system has moved so far from the original reason for its inception. I wish I had a way to help but since I do not I will close by thanking you for educating the wider world about the struggles LD families face.

  16. I’ve worked in various roles in the LA and it was hugely frustrating at times. I am loving your blog and the way you write. You have obviously had some awful dealings with the council. I’ve only read bits and bobs that have touched on your story so far, but I feel compelled to comment here as think it’s pretty great that you write the stuff you do I imagine it can only help others in similar situations.

  17. Meg permalink

    Hi Mark and Steven
    I hope your move goes smoothly, it seems to me after reading some of your blogs that you are both well overdue a break. I work in adult social care as a community support worker and wholly agree with your views on the jargonising and medicalising of ‘service users’ – the PEOPLE I support. The ‘care’ seems to have been lost to ‘systems’, ‘protocols’ and ‘proper channels’. I have even been chastised for being ‘too involved’ aka caring too much. To paraphrase, if I may, yoiur book title – it’s all so much ‘bollocks and balls’. Just know that there are still some people working away in dim corners of the industry who haven’t given up caring to follow protocols and stubbornly refuse to use flannel and jargon when referring to or speaking with the PEOPLE they work hard to help and support and CARE about

  18. Hello Mark,
    We need to understand the UK ‘care’ and ‘day-care’ systems better. We have had little success with some of the UK local authorities….. Could we get you contact details? Regards, Tony & Heather Tregale, Coordinators LISA Inc (www.lisainc.com.au)

  19. Hi Mark. Ive just read your article entitled 10 jargon phrases used for my autistic son.
    It was a fantastic article and i think will really raise awareness on how ‘person centred planning’ is less about being person centred and more about the care system and their jargon!

    My name is Craig and i run something called TREASURE SEEKERS. We put on discos, performing arts groups, coffee mornings, and other activities for those with learning difficulties. We have also recently opened a shop to give work experience for adults with learning difficulties too.
    Our approach is actually person-centred! We work around the needs of the guys and put on events for them. We see such a value and beauty in them and we want to offer as much as we can. We are a volunteer organisation working with the local church.

    Your article really rang true to me, as i worked in care previous to what im doing now, and my heart for providing the best care possible sometimes encountered red tape obstacles!

    Anyway, i just wanted to say thank you for raising that awareness.

  20. Tess permalink

    Recently discovered your thought-provoking blog. Thank you for everything you do.
    I have only one plea: the light text on dark background colour scheme is really difficult for aging eyes like mine to read, especially as the text is so small – surely I can’t be the only one? Next time you fancy a redesign, how about dark text on light background?

  21. Hello Mark,

    I’m in Canada and the way our system deals with children and adults with autism is heartbreaking, simply soul-shaking. The gov’t won’t fund treatment past a very young age – I believe it’s still in the single digit age range – arguing that “their evidence” shows it ceases to be beneficial. My daughter was autistic as a result of global brain damage and she made constant behavioural/emotional progress through treatment throughout her life!

    Parents in their later years seeking safe, decent, productive/proactive support homes for their autistic adult children are most often forced to give up custody and all rights to the gov’t to have them placed in care. If the homes and services provided are lacking, or (every parent’s nightmare) abusive, or simply inappropriate and cause the child to severely regress, becoming deeply discontented, they have no legal means to intervene.

    Our daughter passed away in a seizure 6yrs ago just before she turned 16. After the initial shock wore off, one of the first things we (her father and I) admitted to each other was feelings of shame for feeling “Thank god she’s safe now,” knowing that her adult life if something happened to us would have been perilous. Fear for her future was a living nightmare.

    I happened to find you through a Twitter post. Can’t recall what it was right now but I am delighted to follow the story of you and Steven. I am holding him in my thoughts and send him blessings that this new home will bring him peace and contentment.

    We have founded a private non-profit in our daughter’s memory. Her nickname was Monkey, her last name Hill: Monkey Hill Creative Arts. It is just a small thing, but it is something. We support persons with invisible and developmental disabilities by providing free art workshops and art shows where they can sell their work without commission. It is a way to improve awareness of invisible disabilities in our community and encourage discussion.

    Canada – shockingly – has no internet ‘portal’ providing information or links regarding the long list of invisible disabilities. I am spending a hell of a lot of time gathering the information/links from around the net, particularly from U.S. sites. Our site needs a lot of work yet. I will be filling it out with the information I gather and creating the ‘portal’ that Canada lacks. Here is the site if you are interested in looking: http://www.worthworks.com

    Blessings…
    Stephanie Kirsten Hansen

  22. ines val do rio permalink

    Thank you so much for your blogs and sharing so courageously your experiences and exposing the brainswashing and language distortions in the adult social care world. The stresses of living with our loved ones are nothing compared with those of being in the system – so true.
    Our family have joined others to oppose the closure of our local daycentre and we want to secure the building to transform it into an alternative resource for people with complex needs/autism and whoever “in the community” truly wants to join in and share activities etc.
    Could we email you directly as we would like to invite you to come and speak with other family carers?

  23. The more I read and become involved with adult social care the more disillusioned I become.

    I have yet to come across any comment of a council who are doing all they can to provide reasonable care and support for persons who are at risk. They all have the ready excuse of Government cuts as the reason for not being able to provide what is required, but many, if not all, of these councils did little before these cuts were even envisioned.

    The area of Social Services is very confusing for many family carers and their relatives at risk and, therefore Social Services should be there to provide help and guidance. However, at least currently, many of the frontline workers are not being allowed to do this and are being used purely as a mouthpiece for the directives of senior managements of Social Service. This is much to the disillusionment of many of these frontline workers, who are not being allowed to do the job for which they were trained for.

    As to the Government, they appear to feel more for the persons at risk in other countries, with the Overseas Aid budget being protected, but not the money which should be available for the persons at risk in the UK.

    What I will further say is for all who can voice their opinion to continue to do so, whether it be by blogs such as this one and others, or by any other means that there is.

    As, if no one speaks there will be no voice to be heard for when and if persons in authority give time to listen, understand and act accordingly.

    • LunaLovegood permalink

      This statement “if not all, of these councils did little before these cuts were even envisioned” is very accurate.

  24. Lisa Glithero permalink

    Dear Mark

    I am a barristers clerk based in Exeter, Devon. Over recent months our Barristers have been working in the area of Adult safeguarding, DOLS and COP and we are planning a launch seminar on 20th June. I wondered whether you may be interested in speaking at the seminar at which Local Authorities, solicitors and local charties will be our target audience.

    If you are happy to discuss this my contact details are Magdalen Chambers, 01392 285200 or email lisa@magdalenchambers.co.uk.

    Many thanks in advance and do hope you do not mind my approaching you.

    Lisa Glithero

  25. Rosalyn limmage permalink

    I have a son of 32 with learning difficulties and have had problems all his life with social workers and so forth I have just heard of your blog and look forward to reading it.

  26. Helen Thrupp permalink

    Dear Mark,
    Your courage and resilience are amazing. Found your blog by accident – thank you for it’s authenticity, clarity and humour.
    My only experience of adult social care has been when my dad was dying and my parents were “assessed” as he was my mum’s carer – she has Alzheimer’s. Inverted commas because we were told straightaway it would be easier for us and we would have more choice if we made all caring arrangements for mum ourselves. We felt at a loss for where to turn, how to choose, it seems to turn it all into a transaction. However, plunging in out of necessity, we learned fast and fortunately mum is able to remain in her own home with support. What struck me during that period is the complete lack of joined-upness of the system, so you end up talking to many different people explaining the situation. There doesn’t seem to be a service which can take account of the whole family situation. Or maybe I’m naive to expect/hope for this…
    I think you were so right in your insights about keeping logs. When someone cannot remember what they have done that day, the knowledge they have had fun, enjoyed an activity is more important than whether they had a sandwich or cereal for lunch.
    Your blog is an inspiration, I wish you and Steven all the best.

  27. Hi Mark,

    I hope that you get to see this. We are looking for someone to speak about DoLs at our seminar on 11th July and hoped you may be interested (its a hot topic at the moment due to recent changes). The title for the seminar is Effective Neuro Rehabilitation – Are Timeframes and Costs the real challenge. We are a registered charity Goole Neuro Rehabilitation Centre, part of The Disabilities Trust.

    I hope that you will contact me.

    Kind regards
    Sami

  28. Great blog with humour and warmth, Good luck to you and Steven in the future.

  29. Hello Mark. I have only just discovered your blog after seeing a link on the PBS Facebook page. Glad to hear you and Steven are both well and sad and sorry to read about Julie. Keep posting.

    • Hi David. Great to hear from you. Steven will be made up. He still talks about you every time we have a Proclaimers cd on

  30. Hi Mark,

    I’m writing to you on behalf of The National Autistic Society. We’d really like to invite you to come and speak at our Professional Conference in March 2015 on deprivation of liberty and changes to the MH Act Code of Practice. The conference attracts about 650 attendees and next year’s event will be held on 3rd and 4th March at the Harrogate International Centre.

    I really hope that you might be interested and available to come and speak for us!

    With best regards,

    Kate

  31. LunaLovegood permalink

    I am going through a really tough time with the London Borough of Hillingdon. I am severely disabled and have made the mistake of (i) hanging on in there and (ii) understanding their legal obligations. I read your blog regularly and it is a real comfort. I wish you, Steve and Wayne the best.

  32. Betty Fisher - Mrs permalink

    Mr. Neary

    I have been privileged to read of your story with Steven. My hubby and I have been – and are still doing so – through a most distressing time with our local authority, in the case of our own son – now aged 45 – who has multiple disabilities. If you would liked to read of those experiences, you might like to refer to the list of submissions to the House of Lords, in their review of the MCA 2014 Ā¬(ref: ‘REF’). Alternatively I could send you a copy directly – subject to a point of contact – e.g. email address.

    I did try starting a group page on Facebook, but had to hold it in obeyance due to the COP process involved at the time. Perhaps you would like to have a gander – i.e. Justice for those with Learning Disabilities.

    Best wishes

  33. Sibling carer permalink

    Dear Mr Neary, I desperately need your help. My brother has autism and is facing a similar situation to what Steven went through. I don’t know where to begin in terms of fighting for his rights. Please is there any chance of contacting you via email? Thank you.

  34. Sue Purr Dawg permalink

    I’ve been following #justiceforLB and got the link to your blog from @sarasiobhan. How I remember those big wall units and bringing up my Asperger son born in 1983. His father took him from me in his teens, he got hooked him on cannabis, and many years later we were reunited when he became homeless and his local council had told him he was not vulnerable enough for assistance.
    Emmaus UK saved him. But I feel angry that an over-stretched charity had to step in and that over the years nobody helped him to admit and live with his limitations and accept his diagnosis.

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