Reform! Reform! Reform!

It was a big day in Conference Room Five at the Civic Centre. All 33 members of the social care senior management team had assembled for the “Reform! Reform! Reform!” conference; a one day shindig designed to run several cost cutting innovative reform measures up the flagpole.

Keynote speaker was The Head of Transformation with a gripping speech on “Transforming Transformation in a Transformative Way”. The Head of Personalisation was slightly peeved by this as his afternoon workshop, “Personalising Personalisation” only included two name drops in the tile and might seriously affect his standing. The Head of Champions had high hopes for his power point presentation on “Raising The Bar for Flagship Services” and was hopeful that his audience would be so awestruck, there would be no time for a Q&A, as he had absolutely no idea what he was talking about.

The Head of Everything Person Centred was sweating slightly about her speech on empowering the service user with creative planning. She had tested the temperature and come to the conclusion that she may had run her bath a little tepid. The Head of Hubs was also mildly nervous that her idea to turn Conference Room 5 into a hub for the use of the entire client register may be slightly ahead of its time.

It was probably one of those unfortunate coincidences but none of the parent/carers invited to the conference managed to attend. The Head of User Participation put forward several creative theories about why this may have happened but all agreed it had nothing to do with the council’s decision to hold a 24 hour experiment in suspending all care packages and respite.

By the end of the day, the flagpole was bending with innovations. Effective Commissioning had seemed the way forward and the group duly appointed a new Head of Effective Commissioning.

During a slight lull before the Chair’s closing address, the Head of Daft Fucking Questions stood up (having been suspiciously quiet all day) and coughed:

“I wonder whether we could extend the meeting over drinks and discuss whether having 33 senior managers is cost effective and whether this is another area for potential reform”.

The beauty of having such senior people all in the one place at the same time is that a deprivation of liberty authorisation can be served in record time. Subsequently, The Head of DFQ is now on 24 hour watch in a secure unit, awaiting the arrival of his IMCA.(probably some time in December)

Good. That’s out of the way. Down to happy hour cocktails.

Update (22nd June 2013)

No matter how much I take the piss and try and send up these incredible puffed up, incomprehensible jobs, I can never outdo the real thing.

This week I found out that Linda Sanders (those of you with long memories will remember her as the director of adult social care who delivered her apology to me on the High Court steps) has left her post after a senior management restructure. Her deputy leaves at the end of the month after the new director is transitioned into his post.

At the same time, a number of new posts have suddenly appeared. They go by the testicle grabbing titles of:

* Access Channel Manager.
* Principal Access Officer.
* Day Opportunities Participation Manager.
* Category Manager for Disabilities.
* Category Executive for Carers.
* Service Manager for Customer Engagement.

Oh, how we laughed and sobbed at the Disengaged Customer Steering Pathway Group.

Thankfully it’s not just me. Thankfully, I will always have the memory of Justice Peter Jackson, having listened to a 20 minute explanation of the senior management hierarchical structure, put his head in his hands and say “this is impenetrable”.


News From The Home Front

Yesterday, I had the latest meeting with Hillingdon housing department and much to my surprise, it looks like our housing problem that began last September, has finally been resolved.

The council now accept that as from 16th August we will be homeless and they will be offering Steven a social housing tenancy from that date. It will be temporary accommodation to begin with but they promised that it would not be bed and breakfast; it will be a two bedroom property to accommodate Steven and his live in carer. I was informed that the wait for a permanent property could be anything up to 3 years but as Steven’s social worker pointed out, if he has to wait that long, it would probably be better for Steven as he needs to feel settled.

Steven’s social worker attended the meeting and played a blinder. I follow lots of social workers on Twitter and hear them talking about being advocates for their clients, but until yesterday I had never experienced it first hand before. After our experience with Mrs Narcissus in 2010, it was like a blast of fresh, clean air.

The housing officer informed me that they have already been looking for suitable places and I’ve given them quite a wide area to consider from. In an ideal world, Steven would be found a place close to my sister’s house, so he could have increased contact with his extended family. And it would widen my “circle of support” as well.

A move within the borough would definitely be in Steven’s best interests. It involves the least change. He will still have me around. He will still have the same support staff and he can still go to all the places that he currently goes to during the week. Social housing obviously give him long term security, which a private tenancy never could. And although the tenancy will be in Steven’s name, I will be able to afford the rent, so his compensation will remain intact. I can’t really see any downside for Steven.

Today, I notified my landlady that I won’t be renewing the tenancy in August, so the contract will just end – there will be no need to go through a stressful eviction process.

I’ve also decided to not withdraw my housing benefit appeal. Steven’s future accommodation will be a fait accompli by the time the appeal is heard and even if I win the appeal, the outcome will be academic. It will still be good to know if the tribunal decides in my favour or against. If I win, Hillingdon will owe me a lot of back pay which I can put to furnishing Steven’s new home. Also, I expect to get my deposit back from the landlady, so that can go in the same pot. With any luck, I’ll be able to fully furnish Steven’s new home with minimal drawing from his damages. In any event, he has the money so I’m confident of making him a good home.

I’ve had a strange mixture of elation and sadness today. The elation is obvious – after nine months of unbearable stress, the matter is now resolved. The sadness is harder to pin down. I guess it’s because, absent in all of these plans, is me. I’m Steven’s “live in carer” – I’ve been professionalised. I’m 54 and I have nothing that’s mine and the dreams that I had about moving away will be packed away at the back of one of the new wardrobes.

But the important thing is that Steven’s future and security is sorted and that has to be a cause for celebration.


Aspirations is a funny old business. Sara Ryan mentioned the word in her “My Daft Life” blog today and it set me off on a load of old themes. What have been my aspirations for myself? What were my parent’s aspirations for me? What are my aspirations for Steven? Is it okay to have aspirations for anyone other than oneself?

Many times in the counselling room I’ve heard clients talk about the unobtainable aspirations their parents had for them and how they’ve been left with feelings of guilt and failure that they haven’t lived up to those aspirations. And for as many times I’ve heard that story, I’ve heard people talk about how their parents lack of aspiration for them has led to low self – worth and a lack of drive in going for something. If there is a moral to the story it must be that neither parents nor their children can win; the pitch is either too high, too low or non existent.

In my case, I was brought up with very mixed messages. As an “achiever”, I received a lot of love and praise for achieving and my nan’s prediction that I would be “the first doctor in the Neary family” didn’t feel like a pressure. At the same time, I grew up with grave warnings about “blowing my own trumpet” and for every childhood success I had, I was given the warning, “but don’t get ideas above your station”. In my family, pride about achievement wasn’t trumpeted and we were kept in our place by the fear of leaving and losing our station. I don’t know if this is good or bad. I do know though that attending a family funeral last year and receiving a lot of praise about the court case and my book, I had to suppress the anxiety that I might not have a place in the family station any more. I can hear “your mother would have been so proud of you” but I struggle with, “Wow – the first person in the Neary family to have a book published”.

Is there a difference between an aspiration and a dream? I remember embarrassingly a social studies group at school in 1977. We had to talk about our dreams (aspirations?) and I stupidly told a group of 16 year olds that one of my dreams was to have sex with Debbie Harry. That was probably a dream – aspirations we set ourselves tend to have a slim chance of success. I set myself goals; I love a challenge and I have dreams. I tend not to distinguish between the three.

I’m a parent, so needless to say, I’ve got aspirations for Steven. Most of the time, I’m content with them; I think I have a very grounded idea of who he is and what he can achieve. From time to time, something will come along and I question whether my aspirations for him are too limited. When the Paralympics were on, I had the fleeting thought about signing him up for shot putt training. In the last couple of weeks, Anna Kennedy has been celebrating her Autism Got’s Talent show. Again, fleetingly, I thought should I enter Steven for next year’s show doing his Basil Fawlty and Boy George impressions. But they are big public events and I dismiss my thoughts as I can see that I can get caught up with our modern notion that aspirations are only aspirations if they lead to fame or public recognition.

When Steven left school, I got terribly confused about what he should do with his life now that he was an adult. My idea was that first and foremost, whatever he did, he would need a routine, a structure to his week. Following that, I thought about his interests and things he would like doing and where he could engage with people, which he also likes doing. When I talked to Steven’s old social worker about him doing things like swimming, the gym, I could see that they didn’t fit into her ideas. She really pushed for him to go to college; she was very very keen on him doing a citizenship course. Steven went and stayed for 20 minutes but wasn’t too impressed with a lesson about the importance of queueing when you’re in a shop. I put it down to a lack of imagination (the social worker’s, not Steven’s). It was clear though that she was disappointed when he took up water aerobics at the Virgin Active on a Tuesday instead of the citizenship class – like it had less value. One of Steven’s mates at the Mencap Pool has been attending a cookery class for the last four years. The lessons are repeated every year. As his mother said to me: “We know that we’re always going to get rhubarb crumble every March”. There’s not a problem with that – the guy loves his class and finds the repetition reassuring. The problem is that course is presented as having an aspirational value – by attending he will be achieving a valuable life goal. He is achieving something, it’s just that what he’s achieving is different from the presentation.

It’s the same with Steven’s weekly visit to the day centre. He is there for four and a half hours. It was at the day centre that the occupational therapist decided that it would be good for Steven to make his pepperoni pizza whilst he was there. Nothing wrong in that. He’s quite an expert now and sure makes a mean pizza. However, the activity is still seen as a challenging task and one that adds value to his time spent at the day centre. The whole day is framed around the making of the pepperoni pizza. What is missing from this, is that there is absolutely nothing else for him to do there. If he wasn’t making the pizza, he would watch TV for four and a half hours. Therefore, the pizza is elevated in importance and aspirational value to cover the lack of any other meaningful activity at the place.

Sorry to get to the last paragraph before announcing that I’m not going to say what my aspirations for Steven are. That’s another problem for the learning disabled and their families – their aspirations get judged. Steven has a full week. The way he talks, I know that he is grateful for the routine of the week and he seems to enjoy what he does. He can make himself clear when he doesn’t want to do something and he is just as clear about why he finds the things he does fulfilling.

That’s good enough for me.

Not Knowing

Yesterday, whilst waiting at the bus stop on my way home from work, I encountered the “woman on the bus” again. This is the autistic woman I met a few weeks ago who was becoming increasingly distressed, whilst her carer ignored her for the entire 20 minutes of our bus journey. I reported the incident to the council’s safeguarding team but obviously, never expected to be told of whether they were acting on my report. Anyway, yesterday was almost a repeat performance. This time she was with a male carer, who was walking several paces ahead of her and chatting away into his mobile phone. The woman looked so forlorn. She kept trying to catch him up and speak to him but he couldn’t have been less interested in her.

I’ve been so sad for the woman ever since. What must her life be like if this is the attitude of the people “caring” for her? She wasn’t treated as if she was a nuisance, interrupting the guy’s important phone call. No. it was worse than that. She was invisible. It didn’t matter what she said or did, the people she was trying to interact with didn’t even notice her.

In a way, this is too big a deal to go into. My mind starts becoming overloaded with my imagined background to this sad scene. Like, there must be a culture within the support agency that allows their workers to treat their clients with such contempt. Goodness knows what the support worker logged when he got back to the home but I bet it wasn’t “had a great walk this afternoon, chatting to all my mates and making plans for the weekend”. And then I get into: where were they going? Was it for his benefit? Was the woman only there at all because the staff needed to record some sort of activity in their log.

And what of the council and the CQC? What is their role in all of this? The council must commission this agency to supply staff to the home. Did they get the contract because they were the cheapest? How do they monitor the performance of the agencies they commission? One thing I’d be willing to bet next month’s wages on – nobody will think of asking the woman herself for feedback. My feeling is that she will be just as invisible to the commissioners and inspectors as she was to the support worker.

On the bus home, my fantasy continued. Does the woman have a family? What do they think happens to their daughter when they are not around? Perhaps, she has no family and the type of experience I’ve observed twice in the last four weeks, is her lot now for the rest of her life.

Not knowing is horrible. I cannot explain or express the huge leap of trust that is required when you hand over your vulnerable son/daughter etc to the care system. I feel blessed that we have such a good agency at the moment – they care, they are interested in Steven and their values seem to be good ones. And then a nagging voice appears – “can you be sure of that Mark”? The answer is, no, I cannot be sure and that is tough. We had a couple of dreadful agencies in the early days and I know the council still use them to work at their care homes. Perhaps that is as good as it ever can get – you never know for sure that your child is safe but you can build up your intuitive gut so that it gives you some sense of grounding.

Our housing problem is coming to ahead now and we are left with two choices: if we want to stay in this area so that Steven keeps all his friends, support staff and the places he goes to, then he will have to go back into care. If he wants to stay with me but lose all of the above, then we’ve got to move many miles away to somewhere affordable. It’s a hobson’s choice but after days like yesterday, I’m left thinking that I’d rather he have to try and cope with all those losses than be at the mercy of the agency charged with the care of the woman on the bus.

My Day Off

I had a day off yesterday. Or rather a morning off work. The plan was to clean my bedroom and then when Steven went off swimming, to go back to bed for an hour with my new book about the life of Charles Hawtrey.

Did it happen. Not on your Nelly Furtado.

I decided to ring the tribunal’s service to see what is happening with my housing benefit appeal. I submitted it on 30th December and we’re due to be evicted on 16th August. A very nice chap told me that I am only halfway through the standard waiting period and it would be at least another 20 weeks before I receive a tribunal date. Just a pity we’ll be homeless in 12 weeks.

Had a short spell on Google, trying to find out what happens to a care package if you change local authorities. I’ve been seriously toying for some time with the idea of moving to Folkestone but can’t quite get round an initial stumbling block. If the current care package ends the day we move away, there is bound to be quite a long period of time before a new package is in place. Therefore, even if I have a job lined up, I wouldn’t be able to work until the package is secured. There could be a long period of time where I’ll have no income at all.

Phone call from the support agency to discuss my decision last week not to have any more logs in the house. It’s had a mixed response from the support workers. Tried to explain again to the agency, that I’m not saying they can’t keep logs of their work with Steven; just that they can’t keep them in my home. Selective hearing situation.

Don’t fret Mr Hawtrey – I’ll be with you in a minute.

Then the post came. Two official letters. One from the council informing me that after assessing Steven’s medical details, his application for housing has now been rebanded from a “D” to a “C”. That probably means it will be about, ooooh, 2045 before he’s offered a home. Banged off a quick email to the social worker requesting an urgent meeting to discuss all this.

The second letter was from HMRC reminding me that the direct payment’s PAYE return was due to be filed. So, as a reluctant employer, I reluctantly set about filling in the endless paperwork. It took much longer this year because since the overnight respite payments have been sanctioned, I have been using the agency workers we have during the daytimes to cover the fortnightly night shifts. So, instead of just the 1 direct payment worker that we’ve had for years, this time I had to do the paperwork for 6 workers. They don’t tell you that when you have your carer’s assessment.

Shut the fuck up Mr Hawtrey – can’t you see I’m busy.

20 minutes left until Steven’s return. My bed looked inviting. Shit. Staring at me from the top of my bedside table is the letter from the Office of Public Guardian I received last week. Nothing heavy but a reminder to keep all Steven’s accounts in order for their annual audit. Therefore to show what a responsible property and affairs deputy I am, I set up a speadsheet for Steven’s finances.

The key turned in the door. They’re back. Mr Hawtrey grunted.

A Modern Kind of Hero

If I was a TV executive, I’d immediately commission a series presented by the excellent Suzie Dent from Countdown’s dictionary corner, where she investigates the derivations of the endless non-sensical job titles around.

This morning, I cut through the shopping mall on my way to the bus station. An announcement came over the tannoy:

“If you should fall into difficulty whilst shopping with us today, please approach one of our customer heroes who will be parading the mall”.

Customer hero? I’d like to see the mime for that one on What’s My Line? And Kenneth Williams might ask: “Does it involve capes and utility belts?”

Later I picked up a voicemail from someone at the council asking me to call them for a brief chat. I didn’t recognise the name and she only left the main switchboard number. There must have been more than one employee with the same name because the switchboard operator asked me:

“Would that be personalised services or brokerage compliance?”

I couldn’t comply with the question as I had no idea what she was talking about. I’d love to have said: “Neither. I think she works in the cockateel sexing transition team”.

What strikes me is the assumption that we’re meant to know what all these terms mean. Am I out of touch? Are there idiot guides published on the subject? Can you pick this stuff up at night school?

And if I don’t know what anything means, how can I avail myself of it. Supposing I had fallen into difficulty in the mall – Burtons may not have had a pair of flip flops in my size; I might not have been able to locate the wall mounted brillo grips in Debenhams; I might have had a heart attack. How might a customer hero rescue me from this difficulty?

The trouble with personalised services is that they’re impersonal. If the user of the service doesn’t know what it means, it’s inaccessible. Would I have caused offense if I’d asked the switchboard operator what exactly was being personalised and could I be included please?

Here’s this week’s quiz. Twice in this post, I’ve refered to the switchboard operator but I bet, in real life, she’s not called that anymore. Your task is to come up with the most ludicrous title for that role.

I’d like to offer a first prize of a day in the company of a compliant hero but have fallen into difficulty with brokering such a service. Never mind, it’s not the winning that matters, it’s the taking part…….

Article 8 & Hob Nobs

A lightbulb moment.

Following yesterday’s post “Article 8 & Jaffa Cakes”, I’ve had lots of Twitter and Facebook conversations and even phoned the CQC for an opinion. And once again, I’ve realised that I’ve bought into something where the reality is very different from the presentation. The whole business of the recording logs is arse about face and I’d fallen for it.

Q: Why does someone have a support package?
A: To be supported in having their needs met.

Q: Why does the person receiving the support have to have their life logged and recorded?
A: They don’t.

The bottom line of recording a client’s life is arse covering. The regulator expects it. There may be insurance implications. Let’s not kid ourselves that the primary function of the logs is to benefit the client. And yet, that is how they have always been presented to me. In fairness, people have told me stories of how logs have been used to benefit them; in identifying patterns; spotting weaknesses etc. Unfortunately, my history with the services hasn’t been like that. Within a few weeks lof logs entering our lives back in 2010, Hillingdon had moved from support to evidence gathering into litigation.

The CQC’s position is that they want to see that the provider is supporting the client appropriately. That the client’s needs that have been identified are being met by the service the provider gives. This is such a shift: the recording is not about Steven and me – it’s about the support. The regulator doesn’t need to know that Steven had a banana for breakfast but they are interested in how the provider supports him with breakfast. The regulator doesn’t need to know that “Steven and his father had good interaction”. I’m not a provider. But they do want to know about the quality of the interaction between Steven and the providers.

A log isn’t a crime sheet: it doesn’t need to emphasise what happens to Steven during a meltdown. But it does need to record what the support did before, during and after a meltdown if the standard of care is to be monitored. It’s a very significant shift and one that I think there is a big resistance to.

A few weeks ago, I found a “crazy 20 minutes” recorded in the log. In that time, Steven had broken the new stereo, tore one of his favourite photos, eaten two packets of ham and thrown the phone. It was a very detailed, vivid description of what Steven did but absolutely no mention of what the support worker did. I’m not making a judgement here – I don’t know if what they did was good or bad; it wasn’t mentioned. All this requires is honesty and responsibility and unfortunately within the care world there is such a blame culture, it’s easy to see why the emphasis shifts to the client in the narrative. I never have a go at the support workers for doing anything “wrong” but I get very cross when things are covered up or Steven is presented as the problem. And it’s easy for that to happen when the support is missing from the narrative.

I know that it must be hard if professionally you think you’re being watched with a critical eye at all times. It took a long time as a counsellor for me to accept that professional supervision wasn’t a platform to be criticised but a valuable learning experience. The pressure of this scrutiny can lead to bad practice. When Steven was at the positive behaviour unit, I wasn’t allowed to see what they recorded about him – I was told it breached confidentiality! But I had sneaky peeks nonetheless. One day I noticed that it was recorded that Steven had eaten steak, mash and cauliflower the day before. Impressed, I praised him for eating the cauliflower, something he wouldn’t have eaten at home. His response was emphatic: “Steven Neary didn’t eat cauliflower. Steven Neary threw it in the bin”. I was told later by one of the support workers that they were told to record what had been dished up, not necessarily what had been eaten. This was very problematic. The social worker started to use “all the new foods” that Steven was eating as a reason for not letting him come home as she was not confident that I would follow this new diet plan. It was based ona lie but the practical consequences for Steven were very grave indeed. This isn’t a poke about her but a statement about the nature of recording when the image of the service takes precedent.

Anyway, following my chat with the CQC and my talks with the tweeps from within the field. I feel much more confident of my ground. I don’t want anything to do with all the bloody recording and if it’s really about monitoring the service, there’s no reason why I have to be involved. I don;t expect it to be easy; I have plenty of experience now of when the spotlight moves from Steven and me to others, it can get pretty messy. At the end of all this is my original poser – why should a disabled person, upon receiving a care package be subject to the kind of scrutiny that wouldn’t be acceptable to anyone else. There is no justifiable answer to that – it’s discriminatory. I might even suggest that it comes close to compromising Steven’s and my Article 8 human rights.

On that note, I’m going to have an unlogged hob nob. Don’t tell anyone.