Virtual Dead Ends

Yesterday, carers across the country went on a virtual strike. I must admit, I didn’t really understand the rules of the strike. I’m sure I probably missed something but I did read lots of tweets and Facebook postings from carers describing how difficult their lives were. I understand where this is coming from but I’m not sure it does us, as carers, any favours.

I feel the narrative around carers is totally polarized. On the one hand, carers are talked about as “poor, unrecognised, exhausted, carrying a huge burden”. This is understandable but plays right into the system’s hands. Because the solution to that sort of narrative is a pat on the head and the offer of a pampering day. Prostrate with gratitude for being pampered, the carer then goes about their caring business for the rest of the 364 days of the year. Tied in with this theme, is the idea of the carer as a “hero”. Another dead end – being flattered doesn’t get us anywhere. Being compared to Achilles is the carer’s Achilles heel. I know this may piss a few people off but I don’t think carers help themselves at times. Many times, someone will come into one of the carers groups that I belong to, describe their life (usually seeing it as shite) and tentatively ask for advice. Along comes someone with a useful suggestion and it often leads to fury on the part of the original poster. What they really wanted was a pat on the back for their martyrdom and any suggestion that they could move out of the victim space was met with indignation.

At the other end of the polar spectrum is the carer as “warrior”. One success in sorting out some respite and you become a “warrior carer”. I feel this as unhelpful as the victim narrative. A facile label of a warrior can deflect attention away from genuine need. Puffing up the ego never works in the long run, partly because their is a trip wire between warrior and victim that is seldom noticeable until you’ve fallen arse over tip.

The social care world has lost its soul, so there is no point appealing to it. All of the language I’ve mentioned above is emotive and the system is well versed in how to deal with emotional stuff. It doesn’t even touch the sides. My call, is for the almost impossible. Despite carrying out a role that is drenched in emotion, we have to take the emotional element out of it, particularly when we are dealing with the State. Use your friends, the forums, your therapist (if you have one) to work through the emotional minefield of being a carer but park it before you go into a multi disciplinary meeting. Talk in practical, almost business like terms. Be an equal and resist all attempts to paint you as a victim, a hero or a warrior.

I’m going to put this to the test again in a few weeks. I’ve got a meeting where I’m going to request more respite. I know I’ve had a full on three weeks but I’m knackered (emotional word!). One respite night every two weeks is no longer doing it for me. Thirteen days on 4/5 hours sleep has me walking through the town centre, spotting a bench and thinking: “Oooh – that looks comfy. I might just have a nice sit down for a few minutes”. I suspect that I’m just getting used to being 55. I don’t think I’m ill – I just don’t have the Duracell energy that I had at 45.

But if I go into the meeting and say all that, I will not be heard. I’ll probably come away with a leaflet for a local carers group and be told to contact them for support. Not respite – just support. So, another approach is needed. One without the emotional charge. Watch this space……


Can Article 8 Save The Day?

Yesterday was a stonking day. I had been invited to take part in the Law Society’s DOLs’ Conference in London. I was on a panel in the afternoon with Graham Enderby (Mr E from the Bournwood case) to discuss all the current twists and turns in DOLs – the Cheshire West ruling, the House of Lords report on the Mental Capacity Act and the government’s response to that report.

Four years on from the first time I ever spoke to Lucy Series on the phone when she miraculously found us our solicitor, I finally got to meet Lucy face to face. I found it pretty emotional meeting this wonderful woman who started the trail that saved Steven’s life. I also met Sara Ryan for the first time. I’m afraid that my opening line to Sara was to ask her if she was Val Doonican’s daughter. This wasn’t some weird chat up line left over from the early seventies – Sara and I have a mutual friend, Shelley, who used to tell me stories about her friend Sara who happened to be Val’s daughter. It was another Sara! It was so frustrating that Sara didn’t get much time to talk. We sneaked off to find a quiet space during the lunch but only lasted about 10 minutes before we were found. But I’m so glad of even those few snatched moments with such a remarkable woman.

I’d seen the programme and it was clear that anyone who was anyone in the DOLs field was going to be there. It was like Live Aid for DOLs. I also met up with loads of people that I met during my travels round the country – Leeds, Dorset, Birmingham and Nottingham were out in force and it was cool to touch base. It seems clear that there are some LAs and CCGs who take DOLs very seriously and those I’ve just mentioned are amongst those. What is worrying is those authorities that don’t come to these sort of events, or even hold their own.

Back to Lucy. She really is a force of nature. I was hanging about outside the building before the conference started, chatting to a guy I met in Birmingham. A man approached us and told us that he was holding a one man protest today for his son who had been held in a Unit for the past five years. Much of that time, he had been isolated in a loft room. The man (I regret not finding out his name) had printed some posters with his story on, together with lots of press cuttings of similar cases (including Steven’s). We chatted for a bit and then I had to go inside. I told Lucy about him. Five minutes later, Lucy reappeared with the chap – she had invited him into the conference. And by lunchtime she had fixed him up with a solicitor. Incredible. And it was a bit like seeing a ghost for me – the ghost of 2010. People shouldn’t have to go to Private Eye (me) or picket a Law Society event (him) to get justice for the people we love.

One of the speakers in the morning session was Neil Allen. Neil is a barrister at 39 Essex Street and has worked on many DOLs cases. Prior to Neil’s talk, there had been lots of discussions about the expected increase in DOLs and in particular how Lady Hale’s “acid test” will lead to a tenfold increase in DOLs applications. LAs, CCGs and the Courts are creaking at the seams already – a tenfold increase in their workload will be impossible to manage. (Later, Graham had a very pragmatic view of this – he felt they should “just grow some balls and get on with it – I love the man) The main thrust of Neil’s speech was that we should be giving Article 5 (Right to liberty) less attention in challenging DOLs and instead focus more on Article 8 (Right to private and family life). This made a lot of sense to me but it left me with a thought banging about in my brain that didn’t shift until it came to my turn in the afternoon.

I think Neil is right and it seems far more useful (and potentially successful) to fight a DOLs case on Article 8. But here’s the thought. As Article 8 is so fundamental, so important why isn’t it being engaged long before DOLs come into the equation. Article 8 should be the driver for care assessments. Article 8 should be the main informant of care packages. I said in my bit that people have a life pre DOLs. People don’t drop from the sky like Mr Bean into an assessment and treatment Unit. They arrive at the Unit from somewhere – often their own home or the home they live in with their family. If LAs are to take Article 8 seriously, they should be putting it at the forefront of their care planning and then people like Steven and Connor Sparrowhawk wouldn’t end up in these dreadful units in the first place. If people’s Article 8 rights are upheld when they are living in their own home, there wouldn’t be a need to DOL them. I appreciate this is a radical shift. But I wouldn’t mind having a stab at changing the discourse about DOLs, so they become less used, purely because people are being allowed to live in their own homes, exactly what Article 8 is intended for.

I’m bored with reading quotes (like the one in the government’s response to the HoL report) that says the problem with DOLs (and the MCA) is a cultural one – it is hard for large State organisations to change their culture, change their attitudes. This is rubbish. We’re talking about the law here – people can’t chose to opt out of it because they have problems changing the attitudes within their organisation. Nobody else would get away with that position. The HRA has been around a bloody long time now – it should be part and parcel of all professional training and ongoing supervision. If I was the supervisor of someone planning to move a person from their home and into a unit, I would be asking what the implications of this move would be for the person’s Article 8 rights and could we be in less danger of infringing them if we had a more open mind about the home support package. Needless to say at this point, money comes into the argument but I still don’t get that one. I can see that there is a fixed entrenchment with older people’s care and that having someone visit three times a day for 15 minutes is considered the norm. Increasing that, to protect the person’s Article 8 rights and give them some sort of dignity and self respect will cost more money. BUt for people like Steven and others who end up in positive behaviour units, there is no comparison between the cost of a Unit (£3.5K per week) and a bloody good home package (less than half the cost of the Unit).

Over the past two years, I can see that there is quite a DOLs industry. Steven has a phrase that he uses for various things – a long song (like Bohemian Rhapsody), a Tesco yorkshire pudding, the teeth of a lion. He say’s: “That’s big, massive, huge”. The DOLs industry is big, massive, huge. It needs the shit of situations like Steven was in to fertilise it and keep it growing. Would there be the motivation to switch the emphasis from DOLs to decent Article 8 based care planning? Less sexy perhaps? But surely, more fruitful for the person. And surely, less traumatic than being under a DOL and all that process entails.

Compare & Contrast

On Wednesday, I wrote a post for the #107days blog called “The Cast”. I’ve no idea why but for some reason, it has attracted four times the views of any other of 81 posts I’ve written as part of the campaign. It was quite a simple post, where I listed all the people appointed by Hillingdon during 2010 to work on Steven’s case. The list was as follows:

1 social worker
1 social work manager
1 support planner
1 transition manager
1 Head of Services
1 Head of Residential services
1 Positive behaviour support manager
1 Deputy positive behaviour support manager
4 psychiatrists
1 keyworker
1 linkworker
2 psychologists
4 best interests assessors
1 Safeguarding lead for DoLs
6 Locum borough solicitors
3 speech and language therapists
1 Learning Disability Community nurse
2 Occupational therapists
approx 20 Unit support workers
1 Dietitian
And the commissioned agency on a 100% mark up for every hour they provided a support worker to work with Steven.

Since Wednesday, I’ve been observing Steven going about his business and been struck between the contrast of all those professionals who think they have something valuable to add, and how Steven is capable of managing his time and doing what interests him. The last week has been potentially tough because several of the normal, reliable routines have gone out of the window. I’ve taken the week off work to get on with sorting out the funeral, all the paperwork and the old marital home. So, I’ve been around at home more than I would be, especially on Thursday and Friday. Also, the health club where Steven goes for his Tuesday and Thursday spa is closed for refurbishments, so he’s had to do alternative activities.

I do find it entertaining, watching Steven entertain himself. He usually doesn’t like other people involved when he’s doing something unplanned. On Thursday afternoon, I got back from the funeral directors and Steven was perched on a chair in front of the CD player, working his way through his four disc Abba CD set. The support worker told me that he’d been at it for over an hour. All in all, he sat there for three hours, giving a running commentary to himself of each song. Yesterday, I had the horrific task of going back to start sorting out the house. I arrived back home about ten minutes before Steven got back from the day centre. I brought home 14 photo albums, so when Steven got home, he spent the next three hours before swimming, reading through each album. He only called for me when he needed my input for times, like the snap at Weymouth. He pointed to a pinsize man in the distance of the picture and wanted to know what his name was and the colours of his trousers and whether he’s been stung on the knee by a jellyfish. There were several of those back stories created during the session. It was the same this morning. I went into Uxbridge to meet my friend Mary and got a phone call from home. Steven had sorted out his Smash Hits 1999 Party video (hosted by Steps) and he wanted to tell me a good H from Steps joke. When I got home at midday, the support worker told me that Steven had been busy all morning – after the video he went off to the computer and spent an hour searching Youtube for clips of Carry On films. The worker told me that he tried to be involved but Steven sent him away with: “Steven Neary wants to do Charlie Hawtrey talking on his own”.

I’m really proud he can do all that. When he was in the Unit, they correctly identified that unfilled time and space is problematic for Steven. An autism expert had sent me some stuff about sensory underload, which fitted very much my experience of Steven when he has nothing to do. I found it interesting that an overload or an underlaod, can both easily lead to the same outcome – a meltdown. BUt what the Unit got terribly wrong was that they couldn’t acknowledge that they were creating the unfilled space. All the things I’ve mentioned above weren’t available to Steven – no computer, no DVD player. And the things that were available (a video player), he couldn’t use when he wanted to – he had to negotiate the use with staff and other residents. And worse than that, the Unit, and in particular, the social worker, put value judgements on anything Steven did. Creating a story around a photo was seen as valueless, whilst learning to load the washing machine was seen as tremendously valuable.

So, in not providing the opportunities for Steven to get on living his life, or by placing judgements on the things he wanted to do, they then created, what they saw as a need for all that external input. Utterly self serving. They couldn’t see that lying on the sofa with nothing to do or nobody to talk to about the things he wanted to talk about set off a meltdown but they employed all those people in trying to find a solution. I have to admit, I still get angry when I think about how, not only was that such an abuse of Steven, but also, what a collosal waste of money and resources.

If any of those people in that list above were to become a fly on our wall, they wouldn’t recognise Steven. But then neither, would they see the part they played in that.


These are such crazy days. Take yesterday.

I spent the morning phoning people like the insurance company, bank etc. When Steven got back from his spa, I headed off to arrange the funeral. I hadn’t given it too much thought before, so questions like “how would you like Mrs Neary to be dressed” really threw me. To be honest, like everything so far, it’s been very straight forward – so different from my dealings with social care.

Then I had to travel up to London as I’d been booked to speak at a DOLs conference from 4pm to 6pm. The coroner had promised to phone with the results of the post mortem after 3. I got to London very early so I could take the call. Have you ever tried finding a quiet, private space in Farringdon? I got kicked out of a beer garden because I wasn’t having food.

The conference was fine. It was great to meet Richard, Connor Sparrowhawk’s step dad. Like when I met Graham Enderby the other week, it’s great to share Dad moments in the midst of dense legal discussion.

Why is this post called “Floored”? I got home and Steven had lots of Holby City news to share. We were in bed by 10 but then had nearly two hours of Steven coming backwards and forwards into my room to over today’s plans. I must have said: ” Have a big sleep. Rest your body. And you’ll be all fitter for Gladiators in the morning” over 80 times. The overnight support worker put in occasional appearances but it didn’t make much difference. About 12.30, I got up for a drink and the support worker was sitting on the sofa with his headphones on. I lost my temper and told him to take over. I took the duvet and pillows off my bed, the cushions off the sofa and made a bed up on the kitchen floor. I chose the kitchen because I could then close two doors to try and cut out the noise. I must have dozed off about 1.30, only to wake about 5.15, freezing cold – my back was on the freezer!

Today may be the same. I’ve registered the death, spent ages in the bank and then back to the funeral directors to chose a coffin and discuss music for the funeral. I’m just killing time now in a pub before my already booked, over 55s health check up. For once I don’t think the GP will be able to say her “you’re looking well Mr Neary”.

I’ve had a crazy idea. The marital home, that was the cause of all the housing benefit stress last year, is now solely mine. I don’t want to move back there. And Steven is so settles as a Cowley man, he won’t want to go back. I’ve decided to sell it and buy a 1 bedroom flat for me. It will have a dual functionality – it will be a place for me to go and chill and sleep when I have a respite night. I will also use it as my counselling space, and save myself the rental of the room I use at the moment.

Got to be better than the kitchen floor.