White Noise

A few weeks ago on Twitter a concerned and hard working woman was talking about her job training future social workers and she used the phrase a “privilege to work with their minds and values before they are set free into practice”.  This made me think about those social workers in training, their aspirations and hopes for the future.  Their yearning to make a difference in the world and their thirst to do good.

It also made me wonder at what point their training includes treating parents of disabled children and adults as if they are a blot on the landscape?  At what point are social workers told to ignore parents, belittle them, bully them and make sure that their wishes are ignored?  At what point are they taught to act as if the words of the parents are simply white noise?

I certainly can’t imagine the woman on Twitter ever including that in her training course.  I absolutely cannot imagine any university course for social workers, any college course for social workers or any other type of course anywhere ever including “how to not listen to parents” as one of the training modules.

So how does it happen? When does it happen and why does it happen?  It there any way we can stop it happening?

I realise that at this point some of the people reading this will say that they know a social worker who is wonderful, who has turned their awful situation around and enabled their child/young person to lead a happier, safer and more fulfilled life.  I also realise that there will be social workers reading this who’ll be hurt, affronted and feel that my description bears no resemblance whatsoever to the work they do and the people they are and the people they work with.

And that will be true, because for every story there’s a contradictory story.  For every person who’s not good at their job there is someone else who shines out.

But the big and inescapable truth is that I’ve had many parents write to me with their horror stories concerned dealings with social services.  Stories of pain and frustration that they simply cannot get their social worker to listen to them.  They almost seem to be deliberately ignoring their pleas.

Nico never had a social worker.  We were never offered one.  Having one was never discussed with us and actually he was 15 before I was even made aware that he could have one, or that many families in our position did.  I remember the first social worker who came to visit us.  It was 2003 and Nico was 15.  She came into my house and told me a lot of stuff I didn’t understand.  She had never met Nico but she told me in ringing tones that I really needed to start living in the real world and accept that Nico “had the intellectual capabilities of an 18 month old baby”.  I asked her why she would say such a nasty thing to me without even knowing him or really even knowing me.  She replied that it was high time I put an end to my fantasies and accepted that my son was “hopelessly retarded” and was going to die young anyway, so I should stop planning for a future that wasn’t going to exist.  Then she left.  I never saw her again and a year or so later I heard she had retired.  I have never forgotten her and I have never forgotten her words.  She had no interest at all in actually meeting my son or hearing any of the things I was trying to tell her.

But that was just the beginning.  In 2008 when Nico was 19 (oh yes folks, the dreaded “post 19” story) we received a letter telling us that Nico was being allocated a social worker.  However it seemed that this was going to be good news as his new social worker was a woman we had known for years.  She worked for years at Penhurst, where Nico went first to school and later to their young adult unit so he was there from the age of 6 to 21.  This lady had known Nico well for some time and her mother still worked with Nico at Penhurst.  We thought this was a gift and in fact our first few meetings with her were just great.  She cut through all the acronyms and jargon and explained everything to us.  She was so clearly on our side and told us that she was going to be there for us to help us through, thick and thin.

Then out of the blue, in July 2010 she wrote to us saying that Nico was to be removed from Penhurst as soon as possible and moved to somewhere cheaper.  Our safe, happy little world collapsed.  In the many, many meetings, letters and emails in the months that followed, she never again listened to us, supported us or did or said anything at all which suggested she cared about us, or about Nico’s future.

The events which passed between that letter arriving and Nico moving to Barrantynes, where he died, will be part of the Independent Investigation which has just begun.  In the circumstances I can’t talk more about it at this point, though I am guessing that many of you will be able to fill in at least some of the blanks.

So how did this caring young woman turn into someone who had no interest at all in what happened to Nico, so long as she fulfilled her brief of getting him out of Penhurst?  What turned her from someone who listened and cared to someone who just heard white noise whenever we spoke?

For a start, cuts from the new government began. Deep cuts.  Cuts that made maintaining an outstanding level of disability care impossible.  If I had been put in her position at that time I would have resigned and then contacted us, offering to help using her specialist knowledge.  But she didn’t do that.  Instead she was offered a promotion based on her ability to coldly and heartlessly destroy the care package that was keeping a precious young person safe and well, and move them away, to anywhere so long as it was cheaper.

There must have been others and there must still be others to this day, who battle on, hoping to do good and to make a real difference from inside the system.  But perhaps they feel overwhelmed and by now are physiologically scarred by their own inability to be a force for good, when prevented by the state.  Perhaps it all seems so terrible that they simply cannot allow themselves to identify with families.  Cannot let themselves hear the anguished and pleading voices because they know that if they do, they will only have to deny what they so desperately need.

I have been studying the SCiE website (Social Care Institute for Excellence) http://www.scie.org.uk/ which is a very good, very interesting website.  It is clear from the various articles and blogs featured there, that the SCiE are deeply concerned about what is happening in social care now.  They are anxious to support and train social workers to be the best version of themselves that they can be – particularly in light of the on-going cuts to Social Services.  They are clearly aware of the “white noise” effect and what they would like to do to help all social care workers improve the service they give.

But perhaps they are already too late.  Perhaps the war has already begun.  As I write this, Oxfordshire (the county we live in) has just announced a further 52.6 million pounds of cuts to social care in the county, on top of the millions of pounds of cuts which have already been forced through.  This will take social care in Oxfordshire to the point where it’s untenable and inevitably there will be great suffering and deaths as a consequence.

There have already been two well documented responses to this; one is from an alliance of voluntary sector organisations and care providers who have formed an unprecedented coalition to try to fight these cuts.  They call themselves the “Enough is Enough” alliance and they hope to not only stop these cuts but make more people aware of the effects that the existing cuts are already having – of how many lives have already been blighted and destroyed and also to make people aware of the devastating effect the increased level of cuts will have.

The other well documented response is from a local Oxfordshire MP who has written to Oxfordshire County Council urging them to re-think these cuts.   He suggests in his letter to the council leader “the proposals for possible cuts were disappointing and suggested the Conservative-run council should look at back-office savings and shared services between the emergency services instead.  There is still significant scope for sensible savings across local government to be made by back-office consolidation, disposing of surplus property and joining up our local public services; we will be discussing with Oxfordshire how this can be taken forward to help protect frontline services.”

Ah yes, interesting………..but you see Mr Cameron, as well as writing letters protesting about these cuts, YOU are the person largely responsible for them in the first place.  If you really don’t like them, there’s such a simple answer.  DON’T DEMAND THEM.  CANCEL THE CUTS DAVID.

But that seems unlikely.  The lines for the new war are already being drawn up.  The opposing armies are already digging in.  I have the strong feeling it will be the families who end up sitting out in no-man’s land while the shells fly over their heads.  It’s already becoming the norm for most families with disabled children.

So my question is this – when did it start to be normal that our voices became white noise?



16 thoughts on “White Noise

  1. Firstly, if I had witnessed the poisonous crone bitch- who was an excuse for a social worker to have spoken to you so cruelly about Nico, she would have left the house though the window. But I have to say my son is 39 and still no social worker, I have been led to believe that along with the elusive care managers ” they are only needed when a situation is critical.” What the hell that actually means – Ive never bothered to ask because there is bound to be some well rehearsed answer.

    • The poisonous crone bitch will appear in future blogs as vengeance is always best delivered cold I find. Her name may also appear, depending on how kindly I’m feeling that day. The obvious answer to your comment is the real nature of successfully applying social work skills is to ensure that the “critical situation” is prevented from occurring, when it first starts to appear. However, I suggest you think carefully before inviting social workers into your son’s life. To them he will only ever be a number, a file, another problem and the chances of them sitting down with you to talk about how they can help you to improve his life, health and happiness are right up there with me winning the euro-lottery. PS I don’t do the lottery.

  2. Fantastic post, thank you. As someone who has studied the history of learning disability services I can say that it has always been this way, although some individuals have bucked the trend and become rleliable allies. It began with the belief that learning disabilities were inherited, ergo families were to blame. It changed a bit in the 1950s when pity and sympathy for burdened families became the prevailing discourse. However, the advent of self advocacy and citizen advocacy positioned families as a barrier to people gaining independence. they were ‘over protective’ and the job of professionals was to resist these overly cautious families and champion themselves as on the side of people with learning disabilities. similarly citizen advocacy set advocates up to support people to resist people who sought to curb their rights to be independent adults. I was myself an advocate, and realise now, indeed realised then, that I should have worked with the family to get the best for their son, not ignore them which is how I started out. The power of ideology. Now, the Mental Capacity legislation offers an opportunity to sideline families, especially after the transition to adulthood, and of course it feeds egos to see oneself as the person who is standing up for the disabled person in the face of families interfering.
    That is just my take on the situation, there are other ways of looking at it,


    • Brilliant, insightful and fascinating answer – many thanks Jan. I had never thought before about this history and in fact didn’t know all of it (until reading your comment) but I can now see how this has coloured not only the way that social services have dealt with severely disabled young people, but also the way that society has viewed their work and the parent’s role. Perhaps we are the first generation of parents to be living with the consequences of all of this and it will be interesting to see how this develops. Clearly there’s a groundswell movement with parents and great strength is gathering there, but sadly at the moment at lot of that strength, knowledge. understanding and ability is being dissipated with in-fighting between various factions.

  3. Brilliantly put Justice for NICO​. Our own social worker (who is quite a nice guy) has been told to tell us by Head of Social Care (who is a partronising award winning woman) that there is no money left for N to live independently. Imagine being 23yrs old and having your dreams squashed? Every time he comes he says this. What a bleak future to be growing up in. Her nightmare is being cared for by her elderly parents whilst her brothers and sisters fly the nest. Little do her brothers and sisters know the massive responsibility that with little funding they are going to have to deal with. And that was before this round of cuts.
    I have done similar training in several universities in West Yorkshire and met wonderful student social workers. Full of passion, compassion and there for the right reasons.They are going into a world where the words such as personalisation, choice and control depend sadly on resources.

    I went to bed with a heavy heart and have woken up dreading this round of further cuts. Bleak future for our children when we have brought them up to be optimistic and have hopes and aspirations.

    • What can I say Katie, apart from that I understand and sympathise – no, make that empathise. I have so much going round in my head these days (and nights) and one thing that I keep coming back to is our children’s total dependence on social care hand-outs to let them just live their lives, let alone have their dreams come true. If only we could find a way to break away from this cycle of dependence, need and cuts. A way to make everyone have happy, safe and fulfilled lives but in a cost effective way. It often feels as if we are going backwards at an alarming rate when it comes to disability issues. In the meantime is there any way in which you could create a separate bed-sit, if not a flat, for your daughter? Even building in the garden? I know it sounds a bit crazy, but maybe crazy is all we have left!

  4. Rossi you are an amazing mum. Keep strong keep fighting. Como estas Rossi te extraño. Espero que todo va bien con tu guerra. Leo. Stephens mum. Xx

    • Hola mi niña! Como estas???? Have thought about you so many times and now you are here! We are both fighting on because that’s what mother’s do. I’m writing in English so everyone reading this will understand. You are a very special fighting mother Leo. Good luck with everything – mil besos XX

  5. appalled to read today our local council initiative on Syrian refugees, our local councilor feels the borough is less equipped for the physically or mentally disabled and suggests larger cities are a preferable sanctuary. No disguising the divide or the devaluing . Equality no. Families with disabled family members are not welcome here.

    • ah all is made clear with a response, it is not the disabled people we are rejecting it is just that the professionals have suggested the physically and mentally disabled need access to special people and special equipment .God forbid hoists and all that shite in our lovely borough, robust healthy folk ( from a warzone ?) may apply.

      • What council do you fall under? Clearly they feel under immense financial pressure (and no wonder, given the news coming from Westminster today) but this is not very good publicity for them is it?

  6. The fair county of Kent, the comment is published by a councilor who a month ago stated he was hugely proud to be part of the scheme ( disabled people are one priority group ) a few weeks later he feels we are less equipped to cope with specifically disabled refugees. We have primary and secondary healthcare why he has made this comment is beyond me. I know resources are scarce but for Christ’s sake we are as capable as any other county of responding to whatever need presents in dire circumstances.

  7. If anyone wishes to see a horror story about social workers, go to the recent judgement at:
    and read sections (12) to (16).
    A Judge has taken the rare step (in the Family Court) of naming three social workers: one lied twice on oath (and got promoted); her manager initiated the wholesale alteration of an original report and attempted to keep the truth from the parties and the Judge (and is still in post); and their supervisor’s evidence was “deeply unimpressive”, she described lying on oath as only “foolish” and took no responsibility (and she is now Assistant Director of Children’s Social Care at another Council)!

    On a separate issue, I understand that the Information Commissioner is auditing (or is about to start auditing) this NHS Trust’s compliance with The Data Protection Act 1998. If there have been serious information governance failings in Nico’s case, I would suggest that Nico’s mother (and anyone else with information governance issues at this Trust) write direct to the Commissioner (enclosing evidence) and ask him to pass it to his audit team:

    Mr Christopher Graham
    Information Commissioner
    Information Commissioner’s Office
    Wycliffe House Water Lane
    SK9 5AF

    Unlike most Chief Executives in the health and social care sectors, Mr Graham often replies personally. (Don’t be tempted to go through the call centre!)

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