I’m going to out myself. This was meant to be a secret until later on this year but I’ve been so shocked by some figures I’ve been totting up the last few days, I’m going to let you into my secret early. I’ve been writing a 2016 diary with the aim of publishing it as a book in early 2017. The intention is that it will be an extension of this blog: a combination of Steven’s funniest moments of the year, coupled with a chronicle of what life is like when you are caught up in the social care system. In my diary, I’ve been recording the amount of time, I spend on social care bureaucracy.
I hope you’ve heard of Chris Hatton. In case you haven’t, Chris is the genius statistician for Justice for LB. He also produced a phenomenal daily blog for Seven Days of Action revealing all the stats around ATUs. This blog is my doffing my cap to Chris.
I was never much interested in the kind of stats we did in Maths at school. But I have always been interested in stats that interest me. For about four years from 1973 to 1977, I used to lie in bed and write down the latest Top 20 as announced on Radio Luxemburg. At the end of the year, I would compile stats that I assumed the world wanted to know. I would engage everyone and anyone with my findings and expected them to be knocked for six. “Uncle Bob – Did you know that in 1973/74, The Sweet spent longer at number two than any other act?”. Uncle Bob feigned interest but he was probably more interested in sorting out the puncture on his bike. Similarly, as an avid supporter of Southall Football Club, I would regale my schoolmates with my revelations: “Trevor. Guess what? In season 1975/76, Tony Capp wore the number seven shirt 34 times, the number eight shirt 8 times and the number 4 shirt twice”. Trevor would grunt an acknowledging humph and get back to trying to light his farts.
But I digress. We are 142 days into 2016. Here is the schedule of time I have spent on social care admin/bureaucracy/bollocks so far this year:
26 hours: Sorting out the bank accounts to meet the OPG requirements.
39 hours: Sorting out the mistake HMRC made in assuming I had a debt in the support worker’s tax payments.
11 hours: Sorting out Steven’s rehousing. (Haven’t even got out of the starting blocks with that one yet).
21 hours: Doing the support workers’ wages.
10 Hours: Doing the LA’s Personal Budget monthly audit.
8 hours: Filling out this year’s two quarterly tax returns for the support workers’ tax and NI.
5 Hours: Doing the OPG annual report of my deputyship of Steven’s finances.
3 hours: Carers Assessment.
That’s 123 hours and we’re only in May.
Just imagine that I got paid the hourly Personal Budget rate for all that work. I would be £1319.79p better off.
If I was to equate that to my average charge for an hour long counselling session I would be £3075.00 better off. I guess that you could argue that having to do all this admin has made me £3075 worse off because I have been unable to earn whilst doing these tasks.
And just think what I could have done with those 123 hours had I not been up to my wrists in audit reports? As my Uncle Bob might have said about the failure of The Sweet to hit number one, “It doesn’t bear thinking about Mark”.
My blog post yesterday, “Blowers”, got some really interesting responses. Everyone seemed to get Steven’s George Michael joke and his reaction to his own joke. I think people got that the two minute interaction between Steven and I captured the really important stuff of life.
So why don’t people in Service Land get this? If that story had been fed through the 2010 PBS filter it would have come out labelled as “inappropriate” and would occupy a negative framing. Sadly, I think if it had been understood, it would have been translated into that bizarre social care language that sucks all the life out of anything that provides us with meaning. Katherine Runswick Cole tweeted about her family day out to look at pylons and asked whether that activity would have been viewed the same way. I suspect that it would have been. Hard to see what “measurable outcomes” on a care plan could be achieved by looking at pylons.
What troubles me is that I detect another form of discrimination going on here. I think that since the birth of reality TV where we are all encouraged to vote and pass judgement on someone’s character or their destiny, we have all become much more judgemental. Someone can be nominated for eviction on Big Brother because they are a little bit different and their fate becomes the topic of much water cooler discussion. But by and large in our real lives we can be judgemental of someone without it having major consequences. Not in the social care world. If talking about Fawlty Towers for 30 minutes is deemed by a behaviourist as inappropriate, you could end up losing your liberty. Having a challenging behaviour scrutinise your relationships with a fine tooth comb can be very challenging. Steven had spent 19 years of his life, greeting me by kissing my head. Suddenly, that became dangerous. That embrace was logged as challenging behaviour and put his future family life at risk. Things like love, fun, interests really challenge the challenging behaviour crowd. I feel it is especially dangerous because it can easily become a destructive weapon of power. We may tut about the chap in front of us in the queue at Morrisons but we can’t change him. We can’t legitimise our judgement of him. But we can with learning disabled people. And I suspect that learning disabled people receive the full pelt of judgements that are bottled up in all other areas of a professional’s life.
I’m typing this on the train to Northampton. We’ve just pulled out of a station and at the end of the platform were about half a dozen people trainspotting. Whatever you may feel about the pursuit of trainspotting, you would notice them going about their business, possibly pass judgement but two minutes later, they will be gone from your head. But if those trainspotters had a learning disability, their activity will be poured over by a whole multi disciplinary team of experts. Some of that team would decide its worth by totting up the measurable outcomes. A funding Panel would chew it over to see if it merited paying for a support worker’s time. The PBS people would draw up a risk management plan for the day out. Circles of Support would be formed. A care planner would look into how trainspotting fares in the person centred plan. Poof. All life gone.
In my counselling work, there’s one thing I love doing with clients. I like to get them talking about their interests. Most people come for counselling because a part of themselves has died. Or never been allowed to be born. One thing I know is that when you get people talking about their interests, they come alive. It doesn’t matter what the interest is. Sometimes people will talk about stuff that I know nothing about. Or have never been the slightest bit interested in. It doesn’t matter. I am usually on the edge of my seat. Interests are what makes us interesting. They bring us alive because they release a creative part of ourselves. They give us some meaning to our lives. We learn to live.
Perhaps that is what is so challenging to the experts. A person who is really living might not need their input.
Paragraph from a report on mine and Steven’s relationship, written by the Positive Behaviour Team during Steven’s detention in 2010:
“Mr Neary refuses to acknowledge that by engaging in conversations with Steven that are strictly on Steven’s terms, he is preventing Steven developing in more mature and appropriate ways”.
Last night, I was sitting on the back door step, eating a cheeky Aero and Steven came bounding out:
” Dad – Henry Blowers, Dad”.
“Henry Blowers mate?”
“Dad – Henry Blowers didn’t sing Wake Me Up Before You Go Go”.
” No mate. That was Wham”.
Steven burst out laughing at his own joke and went skipping back into the living room like Michael Flately on speed.
I heard him chuckling and talking to himself:
“Steven Neary & Mark Neary was talking Henry Blowers. Massive funny George Michael joke. Steven Neary is a happy Cowley man”.
It’s the morning after the night before and still feel very wobbly. After spending six and a half hours trying to respond to the threats from HMRC, I fell into bed at 10pm and didn’t wake up until Steven woke me this morning at 6am.
No clients this morning until 11 but I’d agreed with the support worker that I’d get away as early as possible and try and get some sleep before work. Then realised I’d forgotten today’s task. I needed to phone the housing department and have an initial telephone assessment to kick-start Steven’s rehousing. Thankfully, I’ve got the excellent Jayne Knight acting as advocate and she’s already done a lot of leg work but this next step could only be done by me. I was on hold for 35 minutes but that wasn’t too bad as it gave me the chance to hear a wonderful episode of Desert Island Discs with Tom Hanks. The assessment took about 25 minutes, so all in all, another hour gone. It sounds like another laborious process as the next step is for a housing manager to call me back within 48 hours for a more extensive interview.
So, I got to totting up the time spent just in the last seven days on the business of being Steven’s carer. None of this is generated by Steven of course but by the bureaucratic planet we inhabit.
- Last Thursday. Three hours sorting out the LA’s decision to charge Steven for his care. Eventual outcome = charges wiped out.
- Tuesday. An hour sorting out the medication as the prescription was a week late arriving at the chemist.
- Wednesday. Two hours in the building society setting up new bank accounts to appease the OPG.
- Yesterday. One hour back at the bank to arrange the “switching” of accounts.
- Yesterday. Six and a half hours trying to convince HMRC that I don’t owe £6640+ in employee’s tax.
- Today. One hour trying to ensure Steven has a home after his current one is demolished.
Add to that, the normal weekly tasks like the hour spent on Monday doing this week’s payroll and the 30 minute phone call to the direct payments team to tell them they’d sent me an encrypted email I cannot read.
There’s one question HMRC always ask whenever I have to phone them about the Personal Budget tax. “What is the nature of your business?”. I want to answer, ” Interminable shit is the nature of my business”.
This stuff is my business. This week, I have spent more time on sorting out shit, than I actually have working. I’ve spent more time up to my elbows in bureaucratic nonsense than I have being and doing things with Steven.
This is my life and this is how it reads.
Update 14th May
I posted my latest complaint on the way to work yesterday morning. And then out of the blue, I got a phone call from a Complaints Manager late in the afternoon. For the first time, I got the sense I was talking to someone who knew what he was talking about. The chap apologised profusely and confirmed what I suspected – someone had been reading the quarterly figures I’d submitted as monthly figures! I asked him why, whoever I speak to, they insist I submit returns monthly when they only send me quarterly returns to submit. He came out with the killer: ” Most of the people you speak to on the employers helpline won’t have heard of the carers scheme and the special rules and exemptions and will treat you the same way as someone running a business”.
There we go. To the people who have written to me telling me how to run the payroll better, I can cope with running payroll. What I can’t cope with is HMRC officials who don’t know how their own schemes work, expecting me to correct errors that don’t exist.
Regular readers will know that I’m pretty efficient when it comes to all the admin involved in the Personal Budget. I am an extremely reluctant employer and I could whinge for Britain on the subject, but I’m on the ball when it comes to the mountains of paperwork.
I’ve been shaking and sobbing since coming home from work this afternoon. Another two hours of valuable free time completely ruined. Yesterday, my two hours respite was spent in the Nationwide setting up new accounts to comply with demands of the OPG. Today’s two hours was spent on the phone to HMRC and being passed between five different people. It got me absolutely nowhere. I’ve now had to cancel what Steven and I had planned for this evening and pay the support worker out of my own pocket to stay on, whilst I crack on and sort out this latest HMRC created mess.
Here’s a quick chronology since January:
5th January: Threatening letter stating I owed £1075.61
7th January: Four hours of phone calls and I reply stating that I don’t owe £1075.61. No response.
26th January: Threatening letter stating that I owed £1188.03
26th January: Three hours of phone calls and I write stating that I don’t owe £1075.61.
2nd February: Letter from HMRC stating all payments up to date and account is now cleared.
4th February: Threatening letter from HMRC stating I owed £596.28
5th February: Four hours of phone calls and I reply stating I don’t owe £596.28
17th March: Threatening letter from HMRC stating I owed £1739.38
17th March (Yes, the same date): Threatening letter from HMRC stating that I owed £1740.80.
18th March: I write formal complaint.
19th April: Reply from Complaints Manager confirming that my account is up to date and enclosing cheque for £25 for the inconvenience.
6th May (received today): Threatening letter from HMRC stating that I owed £6448.14.
12th May: Second complaint letter sent to HMRC with full schedule of payments due vs payments made for 2015/16.
Here is my second complaints letter:
Dear Mrs Walker
I am afraid that I have to write to you again with a further complaint. I submitted my first complaint on 25th March 2016 and you replied on 19th April, even kindly including a cheque for £25 as a goodwill gesture. Unfortunately it does not look like my original problem was resolved and has in fact been made much much worse.
Today, I received a letter from DMB Campaign informing me that I now have a statement of liabilities amounting to £6448.14! In the space of six weeks since my first complaint about a (mistaken) liability of £1740.80, that figure has now almost trebled. This is ludicrous.
Today, I have spoken to five different people on the phone. In order: an official from the debt management team, two people from the employers help line, one from the “paper filing” team and one from the complaints team. Not one of those five people was able to tell me where that figure of £6448.14 comes from. One of them said, “All is not lost Mr Neary. You can submit all of the returns again”.
One of the big problems I keep encountering is the use of jargon that I don’t understand. Or the staff talk in acronyms that are unfathomable to anyone outside of HMRC. However, I have a suspicion that I know how the error (yours) occurred. Every person I speak to mentions that I should be submitting a return monthly. I submit the returns quarterly. That is because the RT2s that you send me to complete are quarterly forms. I have just received the ones you have sent me for the first quarter of this financial year. I gather from your staff that if a monthly submission isn’t received then you raise an estimated figure and that seems to have caused the huge discrepancy. But I want to reiterate again, that I take my lead from you on this matter – you send me the returns quarterly. I have never received monthly returns from you to complete. The same thing applies with the actual payments I make. Not for the first time, I was told this afternoon that I should be making payments quarterly. Yet, you issue me with a monthly paying in book. So obviously, I take my lead from you and pay monthly.
I have no intention of filling out all the RT2S again for the last financial year. I am a carer who has five hours each week when I’m not either caring or working. That is only five hours to try and deal with messes like this. In fact, I have had to pay my son’s support worker out of my own pocket so that he stays on an extra three hours tonight, which enables me to write this letter and put together the payment schedule. If you would like to reimburse me that £30, it would be much appreciated. There are four employees and I do not intend to fill out another 16 RT2s for each of them for each of the last four quarters, when this mistake is clearly yours.
Instead, I have put together the enclosed schedule. This shows the gross pay, tax, employee’s contributions and employer’s contributions for each employee for each quarter of 2015/16, plus the combined totals for each employee for each of those four quarters. These are exactly the same figures that would have been included on each of the original RT2s. The schedule includes a list of all the payments I made to HMRC for the last financial year; a total of 13 payments.
I think the two most important figures to note from my schedule are the total tax and National Insurance due for 2015/16, which was £14,854.43. That can be compared with the total of the 13 payments I made to HMRC over the course of the year. That figure is £14,854.43. As you can see, what is due and what has been paid match to the last penny.
The longer this shambles continues, the more apparent it becomes that HMRC is not geared up to the situation that most carers find themselves in of having to become employers, just in order for their sons or daughters to get support. It is a nonsense idea and your systems are clearly not set up to recognise the daily realities for carers. The man from the employer’s help line might think he is being very helpful in suggesting that he’ll get a manager from the Carers support team (Does that team actually exist? I’ve been promised callbacks from them at least six times now and never spoken to anyone) to call me back within the next seven days, although he regrets he cannot specify a day or time. As I mentioned earlier, I, like most carers, get a few hours a week free and more than likely will be caught up with caring duties and not able to take a random call.
I trust that my schedule of collected tax and NI when compared with paid tax and NI will settle this matter once and for all. I certainly do not expect to get any more threatening letters about a debt that doesn’t exist.
This week, I’ve seen several online conversations and arguments between the pro and anti Personal Budget gangs. I hope I don’t offend but by and large, they are experts by non experience.
I am an expert by experience and I’d like to tell then to fuck the right off. Another week of free hours passed and not a sniff of any free time. Just five different HMRC robots asking me, “And what exactly is the nature of your business Mr Neary?” Fuck off.
This is what having a Personal Budget is like. Just so Steven can go swimming.
I’m not sure why but I’ve been spending a lot of time in Memory Lane the past couple of days.
Facebook seems to be going into overdrive flashing up memories. And next week marks five years since we went to the High Court for the week long hearing. The week that changed both Steven’s and my life.
Five years. So much has happened in that time. Steven has built a new life, in a new home. My life is unrecognisable to the life I had prior to the one I had before. In a good way.
Then I remember the stats that Chris Hatton compiled for Seven Days of Action. One in particular ties in with my current preoccupation. One that makes me feel heavy hearted and a bit guilty too.
1,950 days is the average length of time people are spending in in-patient services. About 5 years. The chances are that someone who was admitted to an ATU on the day our court case began, is still there. Still being held away from their home and family. Still in distress. Still being medicated. Still being restrained. Still without human rights.
I could break my word count record if I listed all the new things Steven and I have done in the last 1,950 days. New homes. New careers. New interests. New relationships.
It’s called living a life. And when you’re incarcerated in an ATU for 1,950 days, you’re not living a life.
Six months on from the Mazars report into the unexpected, uninvestigated deaths of 1000s of patients in the care of Southern Health and where are we when it comes to the deaths of people with learning disabilities? We’re up shit creek without a paddle if a news report that emerged yesterday is anything to go by.
The BBC reported on the death of Mary Dowd. In their report they describe Mary as “elderly” and inform that she may have had a cardiac arrest whilst sitting in a care chair. Their report can be seen here: http://www.bbc.co.uk/news/uk-northern-ireland-36232783
The excellent George Julian dig some digging and came across this report into the same incident – http://www.publicnow.com/view/183CB5AC79AA2BEB52167881D47DF4FFC26C2262?2016-05-06-15:30:52+01:00-xxx773
It’s very different from the BBC report.
The “elderly” Mary Dowd was 51! Why on earth use that adjective? Is her death more legitimate because she is “elderly”? Does the reader see the word “elderly” and skip on to the next article? Probably. And in Mary’s case, you’ve got the legitimising jackpot – learning disability and elderly. Boom. Nothing to see here. Move along now. Not worth getting into a lather about the death of someone elderly and with learning disabilities.
What the dickens is a “care chair”? Sounds all cuddly doesn’t it? You can imagine the QVC presenters salivating in sincerity as they present this item. The second article tells us that Ms Dowd was strapped into her care chair. Ah! Poorly staffed – let’s strap ’em in. We’ll call it a care chair. Make it sound nice. Draw attention away from the straps.
And then the killer. Ms Dowd was strangled by the strap in her care chair. Left unattended with horrific echoes of Connor Sparrowhawk being left alone and locked in the bath, Ms Dowd slipped down in her care chair and strangled by the strap. Let’s not beat about the bush. She was restrained and was killed by that restraint. Being elderly, care chairs are red herrings. The care less approach of the company felt it was appropriate to restrain their clients and she died.
I’m sick to death of legitimising language. The language that suggests an inevitability about the fate of the learning disabled in State care. Language that firmly identifies the person as the problem and the care provider as the victim of a terrible tragedy.
A couple of weeks back, the BBC reported how several patients had escaped from a facility run by Southern Health. One patient had managed to get to France, been brought back and escaped again. He was still missing at the time of the report. Sloven’s Medical Director, Lesley Stephens popped up on the news and started talking about the “difficult complex needs” of their client group. Lesley – your organisation claims to be mental health specialists – do your fucking job and stop losing people. In using those three words, “difficult complex needs”, Ms Stephen’s dehumanised her patients. She othered them in attempt to gain some sympathy. “Oh, poor Lesley. It must be awful having to deal with people like that”. Job done. Another scandalous example of “care” but you’re off the hook.
True story. I was set up on a blind date over 35 years ago. We were staying on a farm and my mate tried to fix me up with one of the dairy maids. We talked about our jobs and she came out with the classic – “I’d love my job if it wasn’t for the bloody cows”.
One of the dudes from Seven Days of Action recently had a “care plan review”. The hospital have given up. The only “care” featuring on his care plan is restraint and medication. That’s not a care plan. That’s a torture plan. It’s a plan to turn an unhappy dude into an unhuman. An animal in fact. Yet, this plan is legitimised because the dude is deemed to have “challenging behaviour”. I’d like a word in the shell like of Mr Responsible Clinician. “Mr RC. You find this challenging because you’re not up to the job. You’ve copped out. You can keep on drawing your salary and sit on your advisory boards in spite of your incompetence”.
We need to keep calling this out. I’d like to stop using the term ATU because we know that nothing that can be remotely called assessment and treatment takes place there. The name legitimises their existence. Joe Public sees the name and if they think about it at all, will assume that it is completely the right environment for those creatures with difficult complex needs and challenging behaviour.
Let’s call a spade a spade and from now on call ATUs what they are – Medication & Restraint Detention Centres. Less cosy but more honest.
When the BBC can indulge in such shoddy, complicit reporting as they did with their reporting of Mary Dowd’s death, my heart sinks to my boots at the prospect of any real breakthroughs coming post Mazars.