The Personalisation Problem

Prof Simon Duffy has written an excellent but depressing piece in The Guardian, with the strap line that “Personalisation has failed”. And this is from the man who was the pioneer of Personalisation.

I wouldn’t say that it has failed but it is clearly failing. Here are a few thoughts into why that might be happening:

Regular readers will know that I have just had what could be called a success for “personalisation”. Horrified that the local authority were proposing to cut Steven’s support package because they saw the costs of continuing the directly commissioned services (that they commissioned) were unsustainable, I put together a proposal that cut out all the middle men making a profit out of Steven’s package and requested come directly to me, reducing the overall cost by a third. That was agreed but then a whole new set of middle men suddenly appeared. I was told the council contract a payroll company to run the staff’s wages and I would have to use them. More money coming from the package into someone else’s pocket. And this I feel, is one of the biggest problem with personalisation – there is such a huge industry involved now in running the scheme, that there is less money to go round than ever before. And that’s before we even consider councils making efficiency savings. Take the RAS (Go on, someone please take the RAS). Most councils purchased this expensive system that was meant to calculate a personal budget based on the person’s needs and produce a figure that reflected the cash equivalent of their needs. I haven’t met one person who has gained from going through the RAS. I heard that after Steven’s recent FACS assessment (and before my proposal was accepted) that his FACS was fed into the RAS and produced a figure that was “laughable and nowhere near enough to meet his needs”. Some LAs will enhance the RAS budget by taking the case to Panel for a higher amount, which rather defeats the object of having the RAS. Others dont and just pay out whatever the RAS comes up with and then the person needing the care is left with a sum of money but is unable to use it because there are no services available at that low cost. All in all, I guess the inventors of the RAS are laughing all the way to the bank, whilst those on the receiving end of the RAs are not laughing all the way to the foodbank.

The massive personalisation industry has also seen incredible job growth within the authorities charged with running the scheme. I remember looking at the management structure of my LA when we were in court (the judge described it as “impenetrable) and was astonished by how many posts existed to achieve personalisation. And all those people will be coming up with systems that are just as impenetrable as the job chart. For a user, you have to learn a whole new language to even get out of the starting blocks. There are lots of things you are actively not advised about. And you are expected, if successful, to take on roles that are completely new to you. Accept personalisation and all of a sudden, you become an employer and have to start worrying about payrolls, tax returns, employment law etc. All this, just so your son can have support to get to the gym twice a week.

My goodness, you need an awful lot of inner strength and need to be very psychologically robust to get through the Personalisation process. There seems to be an awful lot of mistrust within the system – you are seldom believed and your experience of the person you are caring for is seldom valued. It is disheartening to be trying to get the best service for the person you care for whilst having to withstand these attitudes.

Then if you eventually get a package, you have to live with the daily possibility that it could all be taken away from you. Personalisation is very fragile. A change in policy, a new push on cutting costs, even the appointment of new staff can suddenly remove all the things that you need to live a life. It needs a good degree of emotional robustness to keep going with the knowledge that everything you value could end tomorrow.

I don’t know the answer. It can be done and if it’s done, the people needing the care can have a life that they might want to live. Perhaps it needs all these horrendous systems that have grown out of Professor Duffy’s fundamentally simple idea to be torn down and start again. Trouble is, the system that evolves these systems isn’t usually very good at self relection and even if it was, I’d worry that one gigantic system would quickly be replaced by another. The people running the systems, and those outside who make huge profits out of the system, have too much of a vested interest to be entirely open to changing it.

So, in the meantime, people will continue to live off the crumbs of a RAS, unless they have someone who has massive resources of emotional energy to challenge these systems and really fight for the outcomes that Professor Duffy intended all those years ago.


There we go. Five minutes after posting this blog, I received an email from the Support Planner, in response to my request to manage the payroll myself and cut out another middle man. It says that using the payroll company is the council’s “prefered way of managing the direct payment scheme”. It’s reasons – (a) It is not seen as a “service” like the transport allowance, and (b) it allows for the council’s auditing process of the personal budget.

Steven won’t lose out with this (I hope). It will involve a major change to the current way the support staff are paid an I hope they can manage without pay for a few weeks to accomodate the payroll company’s system as opposed to mine.

But it’s a sad irony that everything I just wrote about above is encapsulated in this decision – the inclusion of the middle men; the need of the council to keep control; the inherent distrust of the council in the carers.


Death Rehearsal

I’ve been reading lots of stuff on Independent Living today and feeling as confused as ever. What does it really mean? It all seems intrinsic to the Personalisation/ In Control agenda but everyone I speak to seems to have a different view as to its true meaning.

One thing that pops up often in the Independence debate, is a phrase about “preparing the person for a time when the carer/parent is no longer around”. Social care professionals are especially keen on this concept and it was used all the time when Hillingdon wanted to send Steven to the hospital in Wales. We hear all the time about how families are excluded from the social care professional’s eyeline when the disabled person hits 18. But this takes that on to new heights (or depths) and taken to its logical conclusion would mean that the learning disabled person would have whole chunks of their life curtailed, so they can rehearse for a time when their carers are no longer around.

Whenever I discussed this issue with Hillingdon, they solely focused on the practical. Emotional connections never once appeared in the conversation. And I would suggest, that the emotional attachment for a learning disabled person is as important, if not more so, than the practical support they receive.

As Steven has become more mature, there is hardly anything practical that he needs from me. If he were to be living “independently”, he would still be needing 24 hour support, so a support worker would be providing the practical help and support. There are many things at home that Steven now does for himself – he can load and start the washing machine; he can cook something basic in the microwave; he can change his bedsheets; the list is very long. He may need help with some of the tasks but that would apply wherever he is living.

In the CoP judgement, Justice Jackson quotes the independent psychologist as saying that living at home with me was in Steven’s best interests because I was the “best person to engage with the narrative of Steven’s inner life” as a result of our shared experiences. This morning, before he went for his spa, Steven engaged me in a long Mr Bean discussion. The two support workers were around but he chose to talk to me about it. When Steven discusses a Mr Bean episode, his narrative includes memories of the many times he’s watched it; how he’s acted out the episodes in his real life; who the people in the episode resemble from Steven’s own life. I know why Steven choses me for this chat – I am the only person who can connect to all the references. The support workers will try but they don’t have the shared history. This is very important to Steven.

I remember a moment in 1997 when we took Steven to the London Transport Museum during the school summer holidays. Earlier on that year, I had been to two funerals for the last of my aunts and uncles. Whilst at the museum, they had an old 120 bus on display. I used to travel on this bus many times as a kid with my mum and Auntie Rose. I became convinced that the museum had got the wrong destination on the front of the bus. The event pierced my gut because it hit home on the tube home that there was nobody left from that generation in my family to check this out with. When the last one who remembers is gone, you really are quite alone.

In my counselling work, I have seen hundreds of people who are either facing their own death, or having to deal with the death (imminent or actual) of a loved one. And one consistent thread from where I sit is that nobody can predict how they are going to feel or react until the time actually comes. Whether you loved or loathed the person, on their death, everything changes and major psychological and emotional shifts take place.

So why should the learning disabled person be put into a forced rehearsal that (a) the non learning disabled person doesn’t have to undertake, and (b) is actually impossible to do.

I suspect I’m rambling. So, one final story to finish on. Last week, I was cleaning upstairs and I heard “Fox On The Run” by The Sweet come on the radio downstairs. Steven launched into a full blown narrative with his support worker, who try as hard as he might, didn’t really get a single reference. Steven told him the names of all four members of The Sweet. He talked about how they played the song during “nature studies” when he was in Gilbert Best’s class in primary school. This was back in 1998 (16 years ago) and the class had just been on a nature trail in Ruislip Woods. Steven talked about the time “Dad saw Brian and Steve in the bacon shop in Hayes”. This must have been about 1974 and I jumped off the bus and followed them into a cafe, sat myself at the table opposite and listened to every word they talked. Steven has adopted that story, as one of the hundreds of family histories that entertain him so much. And when it came to the line “Foxy on the run”, Steven reminded the support worker that Foxy used to go to Pop Idol with Pete Waterman. All of these stories went way over the worker’s head.

Of course, there will come a time when Steven won’t have anyone to relate these stories to. But it would be a real shame to bring forward that moment, in the name of making him more independent.

“What Have You Been Up To The Last Four Years?”

I’ve taken to going into the cafe at the top of our road on a Saturday morning, on my way to work, for a nice cooked breakfast. I was tucking in this morning when I heard somebody call out my name. It was Jill, a neighbour from the road we lived in up until 2009. I invited her over and this is how the conversation went:

Jill: Lovely to see you. Oh, I really miss Steven. Do you remember how he used to sing “5,6,7,8” to me when he saw me get out of my car? It must be over four years now. What have you been up to in that time?

Deep breath. The poor woman doesn’t know what she’s let herself in for…….

Me: Well. Shortly after we moved in 2009, Steven went away for three days respite and the council kept him in an awful unit for a whole year. We had to go to the High Court to get him back home. Then we had a year long battle to get some respite, as Steven wouldn’t go back to the same place again. In 2011, we were back in the High Court and the judge decided that the council had acted unlawfully and Steven’s human rights had been breached for the whole year. Then last year, the council made us homeless from the flat we moved to and it took 14 months to find somewhere else. Thankfully, Steven now has his own lovely house. And then recently, they said they were cutting his support package, so I’ve had another 5 month battle trying to get that sorted.

Jill: Goodness me. That’s all the basics of life. And they’ve all been out at risk. You’ve been through the mill haven’t you.

Me: A bit I guess. Anyway, what about you? What have you been up to?

Jill: Well, as you can see, I’ve got some new glasses.

And with that, her friend appeared and she was off.

My Inflexible Friend

I’ve been winding myself up quite a bit in the last two days since my meeting with the Support Planner (see blog post below).

I guess I’ve been on a bit of a mission, with the original proposal for how Steven’s care is paid for, to achieve real “personalisation”, “in control”, call it what you will. I’ve naively thought that, with all the threats of cuts, this is the best way of Steven getting his care needs met. And at the same time, remove the middle men making such a lush profit from Steven’s disability. As it’s turned out, I have less control than before and we’ve gained three new middle men to replace the two we’ve lost.

Here is the piece from Hillingdon’s website about personal budgets:

It made me laugh because it is typical Hillingdon language. It’s full of “don’t do this” and “don’t do that” and “if we find you’ve done this, we’ll slice your testicles off”. As a piece about selling their direct payment scheme, it’s guaranteed to have people running a mile from the scheme.

My big problem, apart from the glut of new middle men, is the pre paid card and the complete inflexibility of how they expect you to use it. It’s a pre paid card or nothing.

For the past few years, I’ve received direct payments to pay one support worker and to pay for respite. The money has always gone into a bank account every four weeks and I’ve kept meticulous records of how the money has been spent. The account is audited by the council every three months and they’ve never had a problem with the way I’ve managed it. Likewise, I have always paid the tax on time and never had any issues with HMRC. The support workers like the way I manage the package as well. I pay them one month in advance. And if I ask them to cover a shift at short notice, I can pay them on the spot. I know the guys appreciate this – they all live hand to mouth and this arrangement works very well for them.

Under the pre paid card scheme, I will have to use a payroll company to administer the wages and tax. One of the new middle men. Their preference is to pay a month in arrears. And they won’t pay more often than once a month because that is what their contract with the council stipulates. More frequent than that and they will charge the council extra. This is problematic. If I ask a support worker to cover an extra three hours tonight, under the new arrangement, it will be two months time before they get paid for that. The new middle man will slow the process down considerably.

It’s not like it can’t be done. In order for me to pay the cab firm, the council have agreed that I can transfer a sum each month from the pre paid card into the direct payment bank account, and then draw out money weekly to pay the cash fare. Why can’t I do the same with the wages? Because the council has a contract with the payroll company and another one with the company that supplies the pre paid cards, and another one with a local disability organisation to provide “advice and support”. And they have major trust issues.

I’m sure there are lots of carers that would want the opposite course to me. Who’d love to have a payroll company take over all the admin for them. That’s fine. But I thought personalisation was about flexibility and ….. well, personalisation.

My first ever post on this blog, nearly two years ago, was called “It’s Not What It Says On The Tin”. Here we go again…..

Support Planning

Yesterday, I met the Support planner. A nice woman, who knew her stuff and was open to answering the many questions I had. It was a surprisingly pain free experience. Our task was to flesh out the new support plan. My proposal to pay the whole care package by direct payments and cut out the middle men trousering 54% of the money allocated to Steven’s care had been accepted, so we discussed how this is going to work in practice. The budget is made up of three elements: an amount to employ support staff for the normal day to day stuff; an amount to cover a respite allowance; and an amount to pay for Steven’s car travel in order for him to “access the community”.

The first big shock was to hear that my figures “were slightly out”. I’d been notified this in an email a couple of days ago and assumed that I had over calculated the figures in the proposal. It turned out that I had under calculated! The figure that I had submitted to cover the respite allocation was a good deal short. I guess this was a case of me being hoisted by my own petard. Two years ago, in a sort of dress rehearsal for this latest proposal, I costed a respite package myself. The council wanted Steven to return to the Unit where he had been unlawfully held for a year to “meet his respite needs”. Unsurprisingly, he doesn’t want to set foot in the place again, fearing that he’ll never be allowed out again. For a time, the council paid the agency that provides the normal day to day support to cover respite in our home but quickly pulled the plug on that as they felt the charges too expensive. So for the past two years, they pay me £65 twice a month, which I pay directly to a support worker to do the respite. The £65 was the figure I came up with having asked the support worker what he would accept. It turns out that the council rate for overnight respite is a lot higher than that but I was never told that at the time. If I had, I could have either had more respite nights or been able to afford to pay the worker more. But heigh ho – that was then and this is now. From now on, Steven’s budget will include the higher amount.

The council had already told me that all of the budget would be put onto a pre-paid card. I couldn’t work out how I would pay the workers and the cab firm from this card. The support planner explained that I will have to hire a payroll company to take charge of the wages for support and respite and the company will sort out all the wage slips, tax, national insurance etc. That is fine by me as I find the task currently very arduous and the budget also includes an amount for the payroll companies fees. So, the wages are all sorted. The money for the cab firm is more tricky as the whole point of the exercise was to move away from having an account with the cab firm and allowing them to charge way more than the standard fares. What will happen is that the council will allow me to keep open the old direct payment account and each month, I transfer money from the card into the account. Then I can draw money out each week and pay the cab drivers a cash fare each journey. Once again, a good deal because the money will go straight to the cab driver and not to the cab firm.

It did strike me as massively ironic that my proposal was built around trying to cut out the middle man but this new arrangement has as many middle men as before involved, albeit, getting less money for their part. The next step is to meet with one of the local disability organisations who help set up the plan and advise on issues like contracts etc. They have a contract with the council for providing this type of support. Then there is the payroll company that also has a contract with the council to administer service users’ payroll systems. And finally, there is the company who provide the pre-paid cards – another organisation contracted by the council. The more I’m involved in these systems, the more it seems that whenever you lift up any social care scheme, you’ll find several parasites underneath, eager for their cut of the spoils.

One thing that still confuses me about personal budgets is what they can be used for. I’m forever reading stories from the “inclusion” and “in control” groups about the the budgets being used to pay for memberships, season tickets, trips abroad, social trips out. These sort of things have never come up when I’ve discussed Steven’s care needs with Hillingdon. If I’m totally honest, and sorry to piss some of the inclusion people off, I’m not sure that personal budgets should be used for these sort of things. Steven pays for his gym membership and his entrance fees to the swimming pool out of his normal monthly income. Like me. I don’t have a problem with the personal budget going on support and expenses directly related to his learning disability but I can’t see how these other costs are justified. But whatever my personal feelings about the matter, I still don’t understand how people get these sort of activities into their personal budgets. I’m sure Hillingdon would laugh at me if I said I wanted Steven’s personal budget to cover his weekly charges at the Mencap Pool.

Anyways, this all starts on 1st April. Before then, I have to meet with the disability organisation to draw up the staff contracts and to be introduced to the payroll company. All the current support workers have agreed to the change over and we’ll have our first team meeting in a couple of weeks to iron out any potential problems. There is still the tricky job of notifying the support agency that our contract has come to an end – they won’t be happy.

I’m pleased. All of this time and energy feels like another important step in doing the right thing for Steven now and also securing his future. He now has his own home, and should something happen to me, it will be much harder for the council to move him away from his own home. The same applies with the new budget – once it is in place and working well, it will be tougher for the council to take it away from him. I just wish the social care world wasn’t so bloody complicated where even the smallest interaction needs military like planning. I think I’ve become pretty sharp at the tactical stuff but my goodness, it doesn’t half wear you out.

I’m not sure if all this is a success story for “personalisation”. I know a lot of readers of the blog feel that it is. The outcome may be good but it has always been about money first and foremost – Steven’s needs come way down the pecking order behind cash. I think we’ve reached the point in the social care world where we have to acknowledge that and for the authorities to be transparent about that and then just get on with the business of taking charge of the care we need.

A Tiny Seed

I’m meant to get a lay in on a Sunday morning. I do go back to bed after the support worker arrives but the conversation from downstairs is so gripping, I find it impossible to go back to sleep. The plan is that the support worker does Steven’s bath and breakfast. Then I run through the Sunday script with Steven, confirming the running order of the day and then return to bed. Steven then watches the introduction to Match Of The Day – he’s not bothered about the football but he likes to know who’s on the panel. Then, they listen to a C90 compilation tape that Steven and I prepared the afternoon before.

It is the interaction during the tape that is so distracting. Nick, the support worker, is the same age as Steven but he has very little musical knowledge prior to 1990 – his musical tastes only stretch to drum and bass. This is a genre Steven has never really got into – The Proclaimers not including much drum and bass in their back catalogue. This disparity in their musical experience is what makes their conversation so fascinating.

For those of you who may wish to act out the following vignettes at your next theatre workshop. I’ve included some performance notes to help with your characterisation:

Steven: Earnest, delighted to have someone interested in him but slightly bemused that he knows more than his carer.
Nick: Eager to engage but keenly aware that he’s having an intense learning experience.

This is how Sunday’s conversation went:

Track One:
Nick: “Who is this Steve?”
Steven: “Wheatus – Teenage Dirtbag”
Nick – “When was this Steve?”
Steven: “When Steven Neary was in David Watson’s class. Class 1. Steven Neary sang Wheatus in act of worship on Thursday afternoon”.

Track Two:
Nick: “Who is this Steve?”
Steven: “Sparks – This Town Aint Big Enough”
Nick: “When was this Steve?”
Steven: “Long time. Massive long time”
Nick: “Where was Steven Neary?”
Steven: “Steven Neary was not here yet. Steven Neary was a tiny seed”.

Track Three:
Nick: “Who is this Steve?”
Steven: “The Beautiful South – 36D”
Nick: “When was this Steve?”
Steven: “Steven Neary was in Scunthorpe. Steven Neary was eating four bourbon biscuits”.
(The song continues)
Steven: “Nick – no ladies in 36D”
Nick: “No ladies in 36D?”
Steven: “Just the men. Brianna Corrigan’s left. Jacqui Abbott’s not here yet”.
Nick: “So, just the men?”.
Steven: “And Chook from Muriel’s Wedding.”

Track Four:
Nick: “I know this one Steve – It’s Coolio”
Steven: “No. It’s Coolio featuring LV”.
Nick: “When was this Steve?”
Steven: “It was Steven Neary’s first Christmas in Hillingdon. Steven Neary was in Maggie Tesei’s class. Had Coolio and LV on Christmas Top of The Pops with Jack Dee and Bjork”
Nick: “Was Jack Dee the host?”
Steven: “Jack Dee was talking – and now for a marvellous musical montage starting with Coolio and LV”

And so it went on. Nick was taught about the sort of chocolates that Cilla Black eats (Ferrero Rocher); How Gary Barlow came to have jelly up his bum and why Benny Anderson won’t shave his beard off.

Would you sleep?