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Can Article 8 Save The Day?

June 14, 2014

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.

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From → Social Care

20 Comments
  1. If it involves more thinking, more creativity and more effort, then of course LA s won’t do it. They would rather spend more money because it is the easy option and then have the audacity to blame it on the ‘service user’.

  2. After reading through the new 2014 Care Act (which seems to be following yours, mine and
    thousands of others ideals) we should have no worries. BUT the problem is the LA’s seem to be a law unto themselves and will not follow these guidelines unless they are forced to by the LGO and
    it will take exhausting mind/body draining effort on the part of parents/carers to go through this process but we will do it and we will fight it and we will win!

    • Weary Mother permalink

      jg

      I agree. I went through the LGO process it was ‘mind and body draining’, it took years of my life and killed my health. The outcome; the LA was fined and severely reprimanded. Nothing has changed at all in the culture and behaviour of this LA, apart from me being seen as a nuisance, and my son’s life is a frightening anxious misery. I am about to go there (LGO) again. People close to me say ‘don’t do it, it made you so ill last time’. I will do it again, for we must fight for our son’s and daughters and those who come after them. But I know they (LA) will just get another reprimand which they will ignore and probably a stiffer fine, which they can choose not to pay. But we parents have no choice to fight on. I am now so aged and the process takes so long I will probably not live see the outcome. But I will do it. and would do it again and again. Something must give eventually?.

  3. Julie Doughty permalink

    I attended the conference as a researcher but was struck by how many LA attendees and how concerned they were to improve thing for families and how much they apreciated all the contributions so I would endorse Mark’s views here.
    I also saw the worried father who had turned up at Chancery Lane to display a placard and I was so pleased to see people talking to him with genuine interest and aiming to help, which i suspect he probably hadn’t expected.

  4. Shirley Buckley permalink

    Mark wish I could have been there – no I wish Martin could have been there with his placard. Martin himself returned his case to the COP August last year. We are now waiting for the capacity statement from the judge. Meanwhile the SS have issued a DOLs authorisation which is divorced from reality, and has ignored the capacity statement that is in the judge’s hands. I have appealed the DOLs on Martin’s behalf, as relevant person’s representative, and asked for an IMCA. I have no idea how to get this expedited through the Court (which is in melt down) As a side line the SS have removed me as appointee, and are now having Martin’s benefits paid direct to them. I hold EPA and what they have done is illegal and financial abuse. The latest inspection for the residential home which breaks every rule there is. Also last December Martin was put on a fourth anti epilepsy drug by his consultant without any reference to Martin’s or my agreement. I hope to speak to Neil Allen next week.!!!!!!!!! Oh and the home has not allowed Martin a home visit for 14 weeks.

    • Pauline Thomas permalink

      Shirley do you know the names of these epilectic drugs which Martin is on. My son’s medication is giving him hallucinations. I remember that you said before that everybody’s experiences with these drugs can be different. I have gathered evidence from people’s experiences on some of the medication that my son takes. These are people who can express how they make them feel. My son cannot, so it is interesting to see if my son’s reaction to these drugs match theirs. The big Pharma companies do not always share this information widely enough when there are lots of complaints, but are duly required by law to list them in the information sheet which comes with the tablets. However how many people who take these drugs regularly bother to look at any new side effects.

      Mark I apologise for taking this blog to a different place.

      • Shirley Buckley permalink

        Pauline (again aplolgies to Mark) What is your son on? I have lots of experience, but Martin is a very unusual case Lennox Gastaut syndrom, unique re-actions to AEDs

  5. Whilst I haven’t experience DOLs (yet) I absolutely agree that human rights need to be the starting point for any assessment, service, whatever. But I do think there is an element of the attitudes problem which is difficult to overcome. Unless people are held accountable for poor attitudes it won’t change. LAs need a stiff brush up their backsides and if people don’t respect the rights of our disabled/vulnerable, they should be sacked. End of.

  6. Reblogged this on The Boiled Head and commented:
    Human rights should underpin every assessment, decision, service, equipment, personal budget, Statement of SEN (etc, etc). It’s not new, but why do people still not get it? Everything seems reactive in the world of disability. More people slip through the net initially if you don’t support them from the outset but the costs are far greater when the person needs a fire fighter because they are at crisis point.

  7. Sally permalink

    I have nothing like your grasp on the legislation, but a couple of general thoughts:
    I think there is a place for assessment and treatment units, provided they are doing what they are meant to -assessing and treating! With clear plans agreed on by all, a clearly defined time period , well trained staff etc etc..Getting an idea of what is going on with the person and finding ways for the person-and those around them to manage.
    You can’t always assess or put together a new way of managing something in the home. Changing things often leads to an escalation of behaviors, and the family home may not be the place for this-if there are elderly parents or younger sibs etc. I have taken calls from parents who have sustained serious injury through trying to manage behavior at home, having been advised to do so and so differently by a service not present.
    BUT.
    Very, very often, with anything like adequate care this could happen at home.
    There is usually sod-all help for parents trying to get on top of behavioral problems.
    Services are inadequate. They provide no crisis workers or after hours help.CAHMS doesn’t really like to work with autism. Need help at 2 am, you will be talking to some timid new DSS social worker , who knows nothing about your situation. You will be expected to drag your young person to an A and E to speak with a psych reg who has no resources to offer.

    Last week I went to a meeting with our LA about new services for mental health/LD/ASD. After the usual treacle about the wonderful job carers all do etc etc, a council spokeswoman delivered the most sick-making speech about their plans I have heard, in which every second word was “signposting”. The idea was the LA no longer provide anything concrete, just point to some phantom service or back at the parents.
    The longer we allow them to remove themselves from actually providing anything concrete locally, the more terrible centres will flourish.

    • Pauline Thomas permalink

      Brilliant Sally. It is the removal of their responsibilities which is the cynical twist to the LA’s social policies when providing good care for our loved ones.

  8. OMG I couldn’t agree more! Problem is families have had their power removed in favour of the state (LAs) I hope that Neil managed to get across the importance of article 8 – let’s hope for a turn around even if it’s due to the economics of the issue. Article 8 for ever!

  9. Weary Mother permalink

    Would someone spell out, in laymen’s terms please, what Article 8 states. I am in the dark on this.

  10. Pauline Thomas permalink

    Shirley. My son is on Tegretol and Lamictal. On the 1st January this year he stopped taking Tegretol altogether because he has had no seizures since 2008. (He was on 1000mg per day and we slowly took it down over 18 months) However because Tegretol is an enyzme inducer, (It decreases the potency of Lamictal when taking them together), it subsequently made Lamictal more potent when my son was stopped taking Tegretol. He had terrible hallucinations and was so scared. It was heart breaking to see him. His psychiatrist should have reduced Lamictal too, as we asked him to, but that is another story. Meanwhile he has been put back on 600mg Tegretol and we are taking down Lamictal, hoping to get rid of it altogether. However it has become a withdrawal from hell for my son (other people have had these experiences as well to with this drug) and he has not returned to the person he was before. The only positive thing is that he has not had any seizures. Another thing Tegretol has weakened my son’s bones and given him osteoporosis and decreased his white blood cells. Have you ever heard of this before? I believe epilepsy medication should be monitored more carefully when giving it to people who are unable to describe any side effects they may have. More care and information should be given to the caregivers. These drugs are also used to treat bi-polar. I think that people who have not got bi-polar, sometimes get the symptoms of bi-polar after taking these drugs.

  11. Shirley Buckley permalink

    OK Pauline Its a minefield, and insoluble. The side effects, interactions etc of AEDs are so complicated that no-one can sort it. Which is worse the epilepsy or the side effects???? Are the hallucinations from the drugs or the epilepsy???????? I come from the best doctors in Europe, I had direct contact with the makers of Tegretol (Ciba Geigy) and its still insoluble. We Martin’s family learnt to observe as second nature, and in the past worked as a team with the consultants. Now we are subject to unceasing hostility. Psychiatrists are not trained in any way to deal with epilepsy, Is it possible for us to communicate outside Mark’s blog?

  12. *Blushes* And likewise. Having you and Sara and Rob (the man with the placard) there was so important. I feel like I’ve come away with lots more to think about. You’re right though, that the starting point should be decent Article 8 compliant planning, although in fact, i’d say that Article 8 doesn’t take us nearly far enough, and the next phase should be about using instruments like the United Nations disability convention to develop the law even further. In fact, Article 5 has quite a bit of overlap with Article 8 in terms of principles, but it strengthens procedural protections which Art 8 isn’t so explicit about, like independent scrutiny and access to a court.

    I’ve got a post-conference blog post brewing on this, but unfortunately I’m at another conference at the moment so can’t do it justice! This week’s conference, in Galway, began with an emphasis on the power of stories – and the importance of people reclaiming their stories back from the professional and medical narratives imposed upon them. This is where the power of what you and Sara are doing really shines through, reclaiming our stories. Keep writing!

  13. Sally permalink

    Mark, I thought of you at yesterday’s council meeting about EHC’s. (They are busy bees in our neck of the woods right now.)
    Was, I asked, there any intention to fund anything for LD young people who aren’t up to Higher Education? Well, no. No drop ins,no training places, no supported employment. A vague gesture towards persuading local businesses to, um, give LD people apprenticeships. The idea that a broker would find the LD person something to do..There seemed to be an idea of making LD people able to become not LD, to recover if you will, and stop needing any help, by simply ignoring the condition and blathering on about independence.
    Then the killer line:”We will support the young people towards independence by working in parntership with parents. “(Cue comical slide of washing up being done by all.)
    And yes, the very first slide had Choice and Control in capital C’s!!
    I can only conclude that the reality of disability,the admittedly large amount of assistance someone with a learning disability needs, is such a terrible thought that they simply ignore it.Hence the terrible services or no services at all. If we don’t provide it, it isn’t needed QED.

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