Carry On Roofing

This week, after 6 months of pontifications from the housing association, we finally got the hole in the roof repaired. No more buckets in my bedroom. Steven chatted to Dan, one of the roofers, and was chuffed to learn that Dan was a Proclaimers fan.

Stevens only reference point for someone getting up on the roof is Jim Dale in Carry on Doctor. So when he saw Dan on top of the house, he yelled out:

“Dad! Come and look. Its a rooftop drama”.

It reminded me of two other Carry on moments during medical appointments. There was the embarrassing time with the rather large dental assistant when Steven looked her straight in the eye and said: ” Lady looks like Hattie “.

And the time with the paedatrician who didn’t like Steven. At the end of an appointment, he asked Steven if he had any questions. Steven, who had been briefed that this man was a doctor like Dr Tinkle, thought about it and asked:

” Kenneth Williams is a funny man because…..?”


Gorging & Unpleasant Obligations

Every now and again, one of the big disability or carers organizations will issue a statement or report about the effects on carers of providing round the clock care. They talk about mental and physical exhaustion being the result and they often call for intervention to prevent a crisis developing. Usually, their solution to this problem is to call for an increase in “short breaks” and times for the carer to have some “pampering”. As an activity, these reports are pampering themselves. They don’t seem to bear any semblance to any carer’s reality.

I looked up the etymology of pampering. It comes from the dutch/German, meaning ” to cram with food or to gorge”. I’m not sure that a short break weekend could be considered gorging when the carer still has to care for the other 363 days and nights per year.

If we’re not being pampered, we may qualify for some respite. A friend of mine whose daughter has learning disabilities and several major health issues has just been “awarded” 10 nights respite a year. For the other 355 days and nights he gets at most, 4 hours broken sleep each night. The guy is on his knees.

In the OED, respite is defined as “a short period of rest or relief from something difficult or unpleasant”. Or, ” a short delay permitted before an unpleasant obligation is met or punishment is carried out”.

I don’t think sleep, or rest, or relief crops up in the European Convention of Human Rights. Perhaps it should. I might stay awake long enough to savour my pampering foot massage.

Three years ago, the judge in our case ordered a round table meeting between the Official Solicitor’s team, myself, the court appointed expert and several members of Hillingdon’s social care team. The point of the meeting was to discuss Steven’s care plan. After a long discussion, the official solicitor brought up the carers assessment and asked if there was any respite available for me (at the time, I wasn’t getting any). The reply from one of the senior managers was very funny but nonsensical – “No, only within the framework of the current envelope”. The OS asked him what he meant and the guy just repeated the same sentence. End of subject. Suddenly, the court expert started speaking up for me – ” But within the current envelope it is impossible for Mark to have a relationship. Its impossible for Mark to have a social life. I know Mark likes weight training – its impossible for Mark to embark on any structured consistent training programme”. And so he went on. Listing all the things, caring prevented me from doing. It was depressing but impressive at the same time.

This is what it is like. We need new words, new ideas. Let’s ditch pampering – its insulting. The idea of respite has become so tainted and manipulated. What we really need is for the normal things of life, sleep, relationships, to be acknowledged, respected and to be factored into care planning. It’s not a treat. Its being human.

I Spy An Award

This post is dedicated to Chris Hatton. I sincerely hope that this transcript of my speach from the inaugural Viral Quality Conference will put to bed Chris’s doubt’s that its all a load of mumbo jumbo. Chris – I hope your apology is in the post…..

“Welcome fellow viral quality friends. The year is 2014. The location is Planet Earth. The mission is to spread the word that viral quality is this century’s major game changer. I am passionate about viral quality. Slice me open and you’ll see viral quality running through my veins. If I could bottle my passion…..sorry, I’m getting a bit choked up by my own passion.

Let’s all remember that in our service, quality services of top quality are our service. If we can turn first class quality into first class viral quality, we will enable our staff and service users to reach new heights in quality experiences. We can bring together exceptional partnership co-production with innovative quality innovations and change our customer’s viral experiences forever.

People often ask me – what is viral quality? I tell them they are living it. They are breathing it. They are tasting it. Instantly, they get it. Let me be absolutely clear – viral quality couldn’t be simpler. Its the modern way that works when all other modern ways have failed.

Late at night, I like to reflect on the process of processing the viral quality process. It keeps me on my toes. But I know, and I want every single delegate in this room to know, that if we join all the dots then we can make viral quality the beacon for this organization. From the 665 strong management team to the 14 zero hour domiciliary staff across 15 sites, we will sing a glorious viral quality anthem. As we deep dive into strategic transparency, viral quality will innovate and ripen our biggest challenges into award winning successes.

I sincerely hope that this lecture has left none of you in doubt that by bringing together viral and quality, we have created a living experience of tertiary leadership and a movement to greatness.

I can offer no further explanation of viral quality. I’m sure every person here tonight understands the absolute rightness of this vision and will accelerate their staff and customers with a viral quality that will indeed change their lives in a way they could never have imagined. I have yet to meet a doubter – I’ve only encountered believers. Let your leadership soar into the stratosphere of viral quality.

I thank you all”.

LA Grande Motte

I remember, as a rather cocky 17 year old, going to France for the first time. It was a 10 day school trip to a new town in the South of France called LA Grande Motte. I had recently got into the mod scene and despite the sweltering heat, the photos show that whilst my mates were on the beach in t-shirts, shorts and flip flops, I spent the whole holiday in my tonic suit, pork pie hat and loafers. I was so convinced of my cool, I was immune to the piss taking. LA Grande Motte means the big word and we had a running joke of inventing a “big word of the day”. One day, my friends invented ” Prickinaparka” but I rose above it. Until we went to a local bar. I was one of the better French speakers in the group, so I volunteered to get the first round in. I don’t know whether the barman was more taken aback by my terrible accent or the fact that I was wearing a a Lacoste jumper in the middle of June. Making sure that I had an audience was assembled, I gave my order: 7 beers, 2 glasses of wine, a Dubonnet & lemonade and a selection of sandwiches. I expected a round of applause. The barman looked flummoxed and asked me something in return. I was stumped. I couldn’t understand a word he said. Mr Hart, the French teacher came over to bale me out and I slinked away – my face redder than my sta-press slacks.

Steven’s support worker arrived today and said he’d read my blog on personalization. Steven, earwigging, said: “That’s a big word. Massive”.

Social care is full of big words but most of them, meaningless. I try to learn the vocabulary but I always feel like that boy at the bar. I read about ” partnership working” and “experts by experience” and my stomach turns. I think its useful to have a stab at understanding what these things mean but life is too short to get too immersed in them. Most of it is just a game to keep the real people out, so its probably best to understand the rules of the game but not to take part (like me and cricket).

If I’m invited to speak, I feel okay because I know I can use my own language. But when I read tweets like: “@markneary1 should contribute to this”, I get nervous because I know I’m going to be on the back foot. I suppose I have a fear that if I get drawn in, I might end speaking like that too. I know that may sound as cocky as 17 year old me, but I do feel that.

Big words. Small ideas. Words stolen and manipulated to cover what is really happening. One day I’ll write to Suzy Dent in dictionary corner and ask her to look into ” fairer access to care services”. I suspect she’ll find that every word in that phrase is the opposite to the reality – unfair, shut out of no service.

And on that note, I’ll head for the beach, slip into my lambretta shorts and sip my ice cold Dubonnet. Au revoir.

That Was The Personalisation Week That Was

My post from yesterday about more stresses arising from having a personal budget has prompted quite a bit of Twitter discussion. The number of views the post has had is very high as well, but most of my personalisation posts get way above average readership. I wonder whether people set up an alert for every time “personalisation” is mentioned. It would be rather spooky if all those people who declare themselves “passionate about personalisation” went beep whenever I press “publish”.

But nothing changes. And why should it. The LAs are delighted to have got rid of one pesky piece of their statutory duty. Having burdened the carer, why on earth would they want to take that burden back. And all the organisations that have sprung up or grown on the back of personalisation aren’t going to want any change – it would curtail their purpose. Their job is to discuss, sell and produce glossy brochures (thanks Ermintrude).

I thought I’d do a post laying the demands of a personal budget bare. This is my personalisation diary for the past week. It is important to note that the times I mention in this diary, aren’t just the times I spent working on the budget issues – they were the only times this week that I had when I wasn’t either caring for Steven or working. Apart from the 3 hours away on respite on Monday, every single spare moment this week has been taken up with personal budget processes. The bottom line of this diary is that there was no more time left in the week for me to attend to the business – not that I had completed all the business in this time.


8am – Go to Tescos for shopping & stop off at cashpoint to draw out money from DP account to pay the cab fares this week.

11.30am to 1pm – Try to make some sense of the HMRC form they’ve returned to me. Apparently, I’ve done something wrong with the national insurance contributions but for the life of me, I couldn’t see how or where.

Tuesday: No free time at all the whole day but bothered by social worker’s voicemail reminding me that it is important to have kept all my PB records up to date before Panel sits to consider my respite request.


2.30am to 3.15am – Suddenly wake up, anxious about yesterday’s phone message and the veiled threat. Find myself going through the pay slips and cab receipts for the past six months.

8.30am to 9.45am – Write long letter to social worker detailing why I need the increased respite. Tried to do a “competitive” costing in the hope it would win Panel over.

9pm to 9.30pm – Having arrived home from late shift at work and found Steven got out during the evening, have long discussion with support worker about incident and my expectations of him


915am to 9.40am (before my first client at work)- Had long phone discussion with local disability group about employment contract law and how to proceed with the incident from last night. Crestfallen with the response – sounded like the sort of process the LA would have to use with a member of their staff.

2.30pm to 3.45pm – Fancied a quick pint after the weekly shop but had to write formal letter to support worker following the advice this morning.


6.30pm to 7.20pm (whilst Steven at swimming) Did this week’s wages. Took slightly longer than usual as I had to calculate 1 extra night shift and extra hours for worker who came in early that day to help me take care of Steven whilst I dealt with the roofers.


8.30am to 9am (before my 1st client at work) Worked out the Sunday shifts & Monday respite shifts for October.

Still outstanding for tomorrow whilst Steven is at swimming – get back to the HMRC form.

I just want to stress again – this isn’t just the time I spent on the personal budget this week – it was the only time I had free and all free space was choc a bloc with PB tasks. I did get to watch an episode of Lewis whilst I was away on Monday night and I did spend an hour on Friday morning browsing furniture for my new flat. But that was the week.

Pretty much the same as every other week.

Call Me Mr Tesco

A very worrying thing happened on Wednesday. I got home from my late night at work and Steven greeted me with: “Tell Dad what you did”. This is Steven’s opening line to a confessional. What happened was that he wandered off during the evening. The support worker said he was upstairs running the bath and came down to find the front door open. He found Steven round the corner, knocking on a neighbor’s door.

This scared the shit out of me. I tried to challenge the support worker, who has been quite problematic recently, but his attitude was way too casual. I told him I would put my concerns and expectations in writing and we’d have an urgent supervision session next week.

Writing the letter has been a nightmare – I’ve felt so incongruent. But I took advice beforehand and was advised about the correct processes I need to follow under employment law. So, this first letter merely expresses my concerns and instructions of how I want him to work with Steven. I then need to give him time to absorb, reflect and act upon my letter. If the problems persist, then I move to a written warning stage.

It has struck me that in being forced to become an employer simply to obtain a personal budget, I have to adopt the same working practices as a multi national like Tescos. Pre personal budget, if there was something I was unhappy about, I would contact the agency and they would sort it. Now, I have to follow a set of long winded procedures, even though Steven is potentially at risk. There is no point in me raising this with the council – they are just happy to have got shot of their statutory duty.

Also this week, HMRC sent back my direct payment tax return. Apparently, I’ve missed something out in recording the national insurance contributions. I’ve read the ” helpful guide” several times but nothing I read sticks in my head.

I finally finished composing the letter to the support worker. 4 pages! To comply with my responsibilities as an employer, I’ve had to include: my concerns, my expectations of his role, an explanation as to why my expectations are reasonable, and a very long list of instructions for every single task he carries out with Steven. All this because he’d forgotten that you don’t go upstairs for any length of time and leave Steven downstairs when he is agitated. Or perhaps he’d nodded off. Who knows?

I feel like I’m in a catch 22. I’d love to pass the whole sodding, stinking personalization con back to the council and say “get on with it”. But its too late now. The support workers are employed by me now and they wouldn’t want to go back working for an agency again. I don’t blame them. And the reason why I was forced to accept a personal budget in the first place still exists – the council won’t pay the rates the agencies and the cab firms charge, so Steven would lose out big time – I wouldn’t be able to afford the same level of support that he gets now.

I’m sure though, that when personalization was first thought of, carers weren’t expected to assume the same employment practices as Tescos. I would say that every carer I know has neither the time, the energy or the inclination to set themselves up for such a ludicrous endeavour.

And as I’ve said many times before, all this complete crapshite, just so Steven can go swimming and to the gym.

3 Tales From Planet Social Care

I had a night away last night. It’s funny how over the past three months, my attitude to a respite night has completely changed. A Monday night off from caring used to be meeting up with friends, a few drinks and back home when the pubs shut. I guess it’s changed because Steven has been switched back on since he came off the medication – he needs much less sleep than when medicated and he talks incessantly – mostly to me with conversations that last hours about his favourite subjects – lookalikes, pop songs etc. So now, when I get a night off, I like to take myself away and have total peace and quiet. My days of painting the town red have gone and I’m now in bed by 10pm.

Tale 1. Last night I was sitting in the bar and saw an old friend. She is the mother of a guy who was at the same school as Steven, possibly two years above him. She told me about a mutual friend, whose daughter recently moved into the much lauded supported living scheme round our way. It got a lot of press interest and the council really sold the scheme to people and their families. Anyway, the friend’s daughter has been there since June and is getting increasingly concerned. There are between 25-30 flats in the block but only 12 staff at any given time to support the residents. My friend was telling me how her daughter, who prior to moving in was out and about every day of the week, can now only go out twice a week because there isn’t enough staff to cover. Also, the residents are expected to pool their personal budgets to do joint activities but even then, they are often cancelled due to lack of staff. As my friend said – “It’s the biggest con this year”. Coincidentally, on the way to the hotel I passed the land where the day centre used to be that my friend’s daughter used to attend. It is now a building site, building flats (for private sale – not for the disabled). The other sad thing about the place is that there is a small communal area that was presented as a place for people to get together when they had social events arranged. Now it seems, that residents are being herded into this space because there isn’t sufficient support to allow people to spend periods of time in their own flats. Such a shame.

2. Today, I was asked to speak at an event in a neighbouring borough about the experience of 2010/11. I got a cab from the hotel and it was one of Steven’s regular drivers. I had no idea where we were going but the driver reckoned he had been there several times. At one point, we seemed to drive straight past the community centre where I was giving the talk and the driver parked up a couple of streets away. I suddenly realised to my horror that he had brought me to the centre run by Hillingdon’s positive behaviour team. This is the place that Steven has recently decided he doesn’t want to go to anymore. One of the support workers told me last week that he’d heard from his mole that the place is closing in December – another potentially useful resource down the pan. As I sat in the car whilst the driver consulted his sat nav – one of my adversaries from 2010 came out of the building. I slid down in my seat. For one, I didn’t want to engage in pleasantries. And also, how might I respond to the question – “What are you doing around here Mark?” It would have been awkward to say that I was doing a  Q&A about how you fucked Steven and me over four years ago. It was a good morning and reinforces the hope I have that there are some damn good people working in social care and all they need is to be liberated from the strangulating system.

3. After the talk, I picked up a message from social services responding to my request for increased respite when I get the flat. Ironically, I’d been following a discussion on Twitter about Planet social care’s attitude to carers and sleep. It’s not an obvious human right but the expectations of carers to go night after night without sleep is totally ridiculous. The subject always gets turned into “short breaks for carers”, which in translation, means a couple of nights away a year. A year! Sleep deprivation is often used as a torture tool but it is quite permissible to expect carers to get by on no or 1 or 2 hours sleep a night. The message informed me that they would have to do completely new assessments – a new FACS assessment for Steven and a new carers assessment for me. Resulting in a new care plan and new personal budget. The message ended strangely – asking me if I’d kept up all the records for the personal budget that I’d been asked to keep. It ended: “These things weigh heavily when Panel are considering a change to a personal budget”. I didn’t understand that but if felt vaguely threatening. Of course, I’ve kept records – it was spelt out to me in no uncertain terms by the direct payments manager that they could withdraw the budget if I didn’t fulfil their expectations of me. And the quality of Steven’s life is at stake, so as much as it sticks in my throat, I have no choice but to be a good, obedient little boy.

That’s been my last 48 hours. I think it shows how saturating the social care world can be when you have to avail yourself of its services. One of the questions this morning was about my ongoing relationship with Hillingdon. I said that I would just love to be left to get on with things. To be trusted. To have acknowledged that I am really trying hard to do the best for Steven. As the three stories show – most of the time, that is much easier said than done.