I thought I’d better write this post to check I’m still alive. Earlier, I spent an hour watching my life flash before my eyes (Well, the last five years anyway) and it grew increasingly alarming.
I finished work at 3pm and as its a respite evening, the rest of the day was mine. To be honest, the money from Hillingdon has been burning a hole in my pocket. So, I popped into Uxbridge. I don’t go to Uxbridge much since we became Cowley men. The last few years there were pretty horrid and as a fully qualified, accredited counsellor, I tend to work to the principle that its better to run away from your issues rather than face them head on.
I didn’t know what I wanted to treat myself to. Nothing rash. Nothing extravagant. An emergency summer anorak? An onyx wall mounted Brillo grip? I even found myself standing outside Hair By Pam, noting that Pam is doing a special offer in a full threading. The only thing that stopped me picking up this bargain is that I have absolutely no idea what a full threading is. Perhaps, I could ask for a partial threading? In the end, I brought a book and a Hi De Hi boxed set. I didn’t even break into the arrears money as I had a birthday gift voucher from my sister.
Then, my legs took me to the Slug and Lettuce. I haven’t been there since we moved. I used to go there every Monday when we lived in the flat. They do half price food on a Monday. Before respite, I would fly out of the flat an hour before the support worker clocked off and have a steak, chips and a flat mushroom. One hour per week was all I got for 2 years whilst Hillingdon argued Steven could go the Unit once a week, so I got a break.
The other reason I don’t go back to the Slug is that it is directly opposite the Civic Center. A bit too painful. But today, as a fully qualified, accredited counsellor, I decided to take the bull by the horns and bury that ghost.
As I sat there eating my Italian salmon, buttery mash and roasted Mediterranean vegetables (does moving to Cowley change your palette?), an entire Greek Chorus from the last five years, danced across the Civic concourse in a farewell dance.
First out was the housing benefit manager, rushing to catch his train. Next, came the senior manager of the positive behavior support team. This is the guy that Justice Peter Jackson quoted as saying, “we are acting legally on everyone’s behalf”. Then came the directs payment manager, dragging herself away from her surveillance of everyone’s personal budget. Then their head of press communications (it was only yesterday, I was writing about her press release). By now, I am completely spooked but very inwardly calm at the same time. I paid my bill. As I was putting on my coat, who should be coming down the steps……you guessed it…..Whistler’s Mother. That was it. I left hurriedly, without leaving a tip. I’d seen her before in the Slug and knew that today was not the day for our karmic encounter.
Coming home on the bus, I kept asking – ” what the fuck was that all about?” Earlier my friend had joked that there must be a note on the front of my file that says, “JUST DON’T GO THERE”. Things are okay now. Steven’s current social worker is great – dead straightforward. She gets Steven. Think she even gets me too. That is everyone we now have to deal with.
We’re having a holiday experiment this year.
Steven has always loved a caravan holiday. In the past, his requirements for a holiday have been pretty minimal. There must be a swimming pool. We need to be fairly close to a leisure park so he can go on all the rides. There needs to be a café where he can have sausage and bacon for breakfast. And he likes somewhere where there is a show to go and watch in the evening.
But over the past couple of years, those needs have changed. The pool is still a must. So is the bacon. But he’s less interested in the leisure parks. Last year I paid £25 each for four of us to enter the Fun Park and after one ride on the ghost train and a quick plunge down the log flume, Steven had had enough. Similarly, the evening show no longer appeals and the crowds that gather there are always likely to trigger off a meltdown. He’s been content to take a selection of DVDs with him and watch them in the caravan in the evening.
So, this year I thought we’d do something different. Let’s get a holiday cottage. And once that idea had taken seed, another idea came in. Every year, I have to make a choice over which two support workers accompany us on holiday. It’s horrible because the ones that stay behind are always disappointed. This year, as I made some money from the sale of the house, I had the sudden idea that we should take all the support team with us. A way of saying thank you for all their hard work during the year and getting me off the hook of having to chose two of them. They were over the moon when I asked them. Although, they will be working for much of the week, there will also be plenty of time off as well. Steven thinks the idea is brilliant! I think it is going to be fascinating – it’ll be like the Big Brother house. I can’t wait to see who is going to take charge.
I found the above cottage, which has an inside pool, an outside spa pool and a room outside that is very much like our own private pub. It has a bar, a pool table, even a jukebox. Steven has struggled to get his head around this – “No more people in the swimming pool? Just Steven Neary and Mark Neary and his friends?” But what has really sealed this for Steven is that it is in Torquay. Home of Basil and Sybil. Steven looked at the photo on the right above and announced: “You can see the sea – it’s over there between the land and the sky”. Every plan he makes has a Fawlty Towers reference. He wants a cheese salad (Like Mr Hutchinson). When I showed him the picture of our pub, he said we could have: “A gin and orange, a lemon squash and a scotch and water please”.
One of the support workers is going to be our driver and we’re hiring a minibus for the week, so if Steven does decide he wants a trip on the ghost train, we can venture off the “cliff edge cottage”. We will go out on a boat. We will go on the land train. Steven didn’t seem that impressed when I showed him the cable car until I told him it was in Babbacombe – “Driving over to Babbacombe? Like Mr Carnegie?”
So, if you’re in the area in June and you pass a minbus with seven Cowley men singing Walking on Sunshine at the tops of their voices, give us a wave. Or pop in for some breakfast kippers (like Mr Lemon).
This is a promise. After 14 blog posts on the subject since September 2012, I hereby promise that this is the last post I’ll ever write about my housing benefit battle. One last thing to get off my chest and you’ll never hear from me on the subject again.
Actually, the core of this post is about “spin”, triggered by the conclusion of the HB saga. On Thursday, I received wads of paperwork from the council detailing how they have worked out the reinstated benefit. I missed it first time but there is a recalculation sheet from 4th June 2012, four months before they stopped the HB. This is where the spin comes in.Hillingdon were interviewed by the BBC, The Guardian, The Times & the Uxbridge Gazette at the time and gave pretty much the same statement to all of them – ” Mr Neary notified us of a change in his personal circumstances, which led to the decision to terminate his claim”. The inference is that I instigated the change. Worse, they linked one change as an excuse for their big decision. As I said repeatedly at the time, the change I told them about was that from June 2012, my income had reduced because I was having to pay higher room hire charges for my counselling practice. Nothing at all to do with the reason why they stopped my claim – they believed I should sell my share of the house that my unwell wife was living in. This is classic spin. Putting two unrelated facts together to disguise a darker truth. Southern Health are experts at this dark art.
So it was a surprise reading their latest letter, to see that not only have they had to reinstate the HB for the entire year that they stopped it, they’ve had to pay me arrears going back to the June when I told them about the change. Their spin came back to bite them on the arse.
Having to deal with spin by the organization that is causing you so much pain is horrid. It is hard to hang on to your truth. Even though you know that the spin is a sign of desperation, the power imbalance is so wide, you are knocked for six by the spin. Think of any press report about a battle between an individual and officialdom – the official statement always appears at the end of the article. The spin has the last word. Back in 2010, Hillingdon’s statement, to justify why they kept Steven in the ATU, was always: “Mr Neary was unable to cope with caring for his son”. No mention that I was only not coping for a few days because I was ill. I won’t even revisit their evil press release where they painted such a despicable picture of Steven. I remember Jerome Taylor from the Independent showing me the press release outside the Royal Courts of Justice and how I nearly threw up all over the pavement. That’s what spin at its worst does to you – it rips your guts out.
The happy ending to the housing benefit saga is that I am now in a position where i will no longer need HB. The money Hillingdon have just had to pay out will cover the cost of the support workers’ wages and the cost of a minibus hire for our holiday in the summer. There is some sort of rough justice in that.
A few years ago for Steven’s birthday, I did a compilation tape of songs that had been at number one on his birthday. Every year, he makes me do the same tape and he listens to itit on the day before his birthday.
He’s playing it now and the annual narrative has completely floored his support worker. Steven is especially keen on the song from his actual birth date – Dub Be Good To Me by Beats International. The commentary is the same every year:
“Here comes Steven Neary.
Steven Neary is not a seed anymore.
Steven Neary is coming out of mummy’s fanny.
Mummy is shouting and holding daddy’s hand.
Steven Neary is in the world now.
Nice to meet you Steven Neary.
Hello Norman Cook”.
I’ll be 56 next week. Birthdays are not normally a big deal to me but I keep finding myself reflecting on what this decade in my life has all been about. Not having been 56 before, I can’t work out if the way I feel is the consequence of the last six years or whether its just being 56. For one I’m slower. I notice a bench as I walk down the road and think “Ooh, that looks inviting. I might have a little sit for a few minutes”. But I don’t. Mostly though, its about my mental state and noticing that my reaction to stuff is very different to pre 50s.
I remember my 50th. I was due to start some major dental work the following day, so went out for a slap up meal in case I couldn’t eat properly for weeks. The next day, and seven teeth lighter, Steven’s social worker phoned me and set in train her plan that 4 months later saw Steven and I have to move out of the family home. As Steven’s and my birthday are only five days apart, my 6th decade coincided with his transition into adult social care. That changed everything.
So, my 50s started with my marriage ending through State intervention and has continued with Hillingdon ” erring” in law twice. Later that year, they unlawfully took Steven away from his home for a year. Two years later, they lost Steven (and me) our home with their error with our housing benefit. Ironically, as I’m so involved in #LBBill but my 50s have been characterized by the sheer vulnerability of my home. My concept of “my home” has been perilously fragile for the past six years.
All this has left me with a great fear of officialdom getting it wrong. Worse – I freeze and become ludicrously incongruent. Yesterday, the OPG returned my annual deputy report as they thought I’d got some figures wrong. I went into panic. What will they do? How will they judge me? What will I lose? Luckily, a friend slapped me round the face and said, “They’re not Hillingdon. You don’t have to fear them”. And she was right. I need to work on that. I think I’ll always be wary of Hillingdon but I don’t need to project that onto everyone else.
I don’t remember such fear, distrust and anger pre 50s. I know its understandable but its going to stop. Its not useful and is incredibly energy sapping. I’m trying to focus on the favours Hillingdon did me. I’ve got a whole new career of writing and public speaking. I’m not always comfortable with it but its an adventure and I like adventures.
The other week I did have a little sit down on a bench. By the lock, along the towpath of my new flat. I watched how turning a handle had such a dramatic effect on the water levels. I know changing our emotional levels can be harder than turning a handle but it doesn’t have to be. That’s all I’m trying to do.
Old time readers of this blog may remember the terrible time back in September 2012 when I was called to a meeting with Hillingdon where they announced they were stopping my housing benefit. Their decision was based on their belief that I should sell my share of the old marital home which was occupied by my unwell wife. At that time, Steven and I were living in a privately rented flat in Uxbridge and the housing benefit was meeting just over 1/3rd of the rent.
We then had a most horrendous year of uncertainty and distress as we knew that unless the council accepted Steven as a tenant for social housing we would be homeless. I went through the humiliating experience of having to represent myself at the Lower Tier Tribunal whilst Hillingdon came along with a barrister! I lost the appeal but Twittersphere sprung into action and assembled a legal team to represent me at the Upper Tier Tribunal. In the meantime, between November 2012 and August 2013, Hillingdon paid a proportion of the rent from their homelessness prevention fund and come August when our tenancy ended, they did a deal with the landlady for us to stay there until they found a place for Steven. It was a horrible time. Steven was really distressed by the uncertainty of where he might be living and it tapped into his big fear that he would be taken away to the assessment and treatment unit again. I found it hard to reassure him when I needed reassurance myself.
Then in November 2013, the council found Steven his lovely house in Cowley. Although the tenancy is classified as a “secure temporary accommodation” we are still here and intend to stay put until the council tells us we have to move.
In August last year, the Upper Tier tribunal heard the appeal and judged in our favour. They passed the matter back to Hillingdon to reconsider their decision. Sadly, between the first decision and the Upper Tier decision, my wife died, meaning the house that had been at the centre of all the contention was now solely mine. I have since brought a great flat which I use for my counselling practice and my respite evenings.
Today, I received a letter from Hillingdon informing me that they are setting aside their original decision as they have followed the Upper Tier tribunal and decided that the old marital home was never reasonably available to me. Furthermore, they are saying that the money they did pay during the year of potential homelessness is to be disregarded as it is classed as a “voluntary payment”. That means they have to pay me the full housing benefit that I was entitled to for the whole year.
I don’t know what to think. In many ways, things turned out for the better as a result of them making an incorrect decision. Steven loves his new home and he could be settled here for many years to come. I know have my own place through the most awful circumstances and won’t ever have to rely on housing benefit again.
But it also strikes me, that like 2010, the council erred in law and set off a set of circumstances that changed our life in a way that wouldn’t have happened if they had got it correct.
Two acts of unlawful decisions in three years seems to me a massive interference by the State into the mapping of our lives. So, the good news of today’s letter is tinged with some sadness and despair that we have been so vulnerable to wrong decisions. It is a victory but it has come with quite a cost.
Good news. After weeks of being passed from pillar to post trying to arrange Steven’s blood test, yesterday I thought I’d have one last bash at appealing to the practice manager at our surgery. To my surprise, Steven’s GP had only returned that day from long term sick leave and I was put through to her. She is great. Within a couple of hours she called me back to say that she’d arranged for the senior male partner in the practice to do the bloods on Friday morning. Fantastic, human empathic service. Now to prepare Steven…..
When he was younger, Steven was completely thrown by pain. He didn’t have the language so it was all expressed in distressing behavior. And he would never allow anyone to attend to him. If he picked a scab, he would hide himself away and later we’d find the hall curtains covered in blood. Thankfully, Basil Fawlty entered his life. Steven had a word. Jip. So now, he can say what and where he has a problem – “Dad – got a bit of jip in my back”. Much easier to deal with.
Then along came Holby City. Steven loves a regular ensemble cast, so it soon became favorite viewing. The script is so formulaic that you can wager your house that every Tuesday at 20.40, they perform some emergency surgery. This fascinates Steven – ” Dr Elliott is taking a bleedy bit of jip out of the man’s belly”. Its helped enormously with blood tests, although he worries the doctor might drop an m&m into the cavity (Mr Bean in America). With language and familiarity, his fears have been lessened.
So, on to Friday:
Me – “Steve. Going to see doctor on Friday for blood needle”.
Steven – ” Steven’s seeing Dr?…..”
Me – “Guess. Its a doctor you haven’t seen for a long time”.
Steven – ” Dr Hansen? Dr Hansen’s going back to Holby City at easter”. (He is)
Me – “No. Not Dr Hansen. Steven’s going to see Dr Vaughn Smith”.
Steven – ” Dr Vaughn Smith? With his moustache?”
Me – “What you going to say to Dr Vaughn Smith?”
Steven – “How’s your moustache Dr Vaughn Smith?”
Me – “That’ll be nice. And are you going to tell him how you are?”
Steven – “Steven Neary is fine Dr Vaughn Smith. Jip is all better”.
Sorted. All I’ve got to remember to do now is to buy a bag of Maltezers. They worked as a blood test bribe in 2002 and the routine has stuck.