No DoL – No Chance?

This is a complete work of fiction.

A friend of mine has been in court recently in an attempt to challenge her Local Authority’s decision that it is in her relatives’ best interests to live in a care home. The court has declared that none of the parties, the local authority or the care home can be disclosed, so my apologies that this post may read a little vague at times.

The judge decided that he was going along with the LA’s decision, although he raised the question whether the same decision would have been arrived at, if the case had come before the court sooner. He decided that after two years in the care home, the relative would be “settled” and a move, either back to her home or to alternative accommodation would not be in her best interests. I understand a certain logic in that but my unease comes from how the outcome could have been very different for the lady if the Local Authority had carried out the proper process at the time.

A couple of years back, when she was in her early nineties, the lady had a fall at her home. She was admitted to hospital but lack of beds meant she was quickly discharged to a care home. She has been there ever since, although nobody at the time agreed that this would be a long-term arrangement. Both the lady and her family assumed that at some point, she would return to her home. After a few months, my friend started to ask questions; normal questions that a concerned relative might ask – most notably, what were the plans for her relative returning home? This is interesting in itself – already the power balance had shifted – my friend was asking others what their decision was. She was quite clear that she wanted her grandmother to come home; the relative wanted to return home but something told her that it wasn’t her decision to make. This is such a common trap that we carers fall into.

So, we have a person in a care home asking to go home and her family asking for her to go home. Surely we are now in Deprivation of Liberty territory. Only, in this case one was never authorised. The lady has remained in the home for two years without a Deprivation of Liberty authorisation (DoL). The consequences of this have been very costly and I don’t just mean financial):

My friend had to take the lead in trying to bring the case to court. This took two years from the time, her relative was first admitted to the home. Trying to find legal representation was near impossible. But if a DoL had been served, the relative could have been represented by the official solicitor and assuming my friend would have been appointed her RPR, she would have been entitled to legal aid as well. None of that happened and now my friend faces huge costs. Also, if a DoL had been authorised, then the case would have come to court much sooner and the whole business of the lady being “settled” might have been seen very differently. A DoL would have to had included the lady and her family’s objection to the placement and a decent stab at a best interests assessment would have had to have taken place, addressing the point which the LA seemed determined to avoid – was there a lesser restrictive option for her care available? Once again, this didn’t happen. It seems to me there were several breaches to the lady’s human rights going on here.

My friend, after two years of fighting, is exhausted and is letting the matter rest. I know that feeling; I am still experiencing health issues that I am convinced are the result of my two-year long battle. My friend was in a very similar situation to me; the LA withheld important information from her and she was excluded from much of the process. To have to fight every single step of the way, when you are being blindfolded most of the time is an exhausting exercise.

There has been a lot of discussion recently about the latest DoLs figures issued by the Department of Health. At the time I felt there was something really important missing – how many people are there in care homes or hospitals without a DoL, where it is clear there should be a standard authorisation in place. We will never know the answer to that as the machinery isn’t there to monitor when this is happening. I know from letters that I get that there are many people completely trapped because they know enough from the Neary vs Hillingdon case that a DoL should be in place but they cant get the managing authority to serve one.

Justice Peter Jackson said that authorities must not use DoLs as a means of getting their own way – does this story show that some authorities may not be using DoLs as a means of getting their way?

This completely imaginary case shows that there could be a lot of it about.

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Working From Home

Last week, I went and visited a friend in their home. Nothing unusual in that, although I realised it was for me. I can’t remember the last time, I visited someone else’s home. I was only there an hour but I became obsessed with how normal their family life was. Whilst I chatted to my friend, other members of her family got on with their homework; mowed the lawn; discussed who would have control of the television viewing from 9pm. My home life is nothing like that.

 

I want to point out that this post isn’t a whinge. My home life couldn’t be any other way. I just wanted to present a narrative about what it’s like to live in a home that is several other people’s workplace.

 

When Steven first came home from the positive behaviour unit, my solicitor advised me to have support in the home from 6 in the morning to 9 at night, seven days a week. Much of Hillingdon’s case against me was based on two assertions: I under report incidents and I am at risk from Steven. Needless to say, they were unable to come up with any evidence to support their beliefs and the judge rightly criticised them for it. But I went along with the solicitor’s advice for one simple reason: I am not at risk from Steven but I am at risk from social services. They have never acknowledged that they got those assertions wrong and all their actions since the case lead me to believe that their ongoing input is not about support but about litigating and collecting evidence.

 

So, what is it like having people around from 6am to 9pm? On the one hand, the guys are incredibly supportive and have made it their mission that they do all the support when they are at work. There are a few times during the week when not a lot is happening as Steven has become so much better at engaging himself, and the support staff will suddenly do my ironing for me, or go round with the hoover. This sounds fantastic, and it is, but sometimes I yearn for the normality of doing a pile of ironing.

 

I guess it is hard if you are a support worker in someone’s home to constantly be aware that it is someone’s home and not just your workplace. I get up at 6am to let the support worker in and he takes over and does Steven’s breakfast and supports him during his bath. If I haven’t got an early start at work, the staff encourage me to go back to bed. I need little encouragement for that but I’m aware that I am trying to sleep in my home, whilst someone else is working in their workplace. A good, but embarrassing example of this is a couple of weeks ago I had gone back to bed and was enjoying a dawn wank when my bedroom door suddenly burst open and the support worker happily brought the washing in to hang up. Apologies all round but an awkward moment to say the least.

 

I wrote at length last week about the logs I have to keep for Social Services benefit and the symbolism of the big blue binder doesn’t escape me. My dining room table that houses the newspapers; bills, Steven’s symbols and is used as our place of dining, is also someone else’s office. Every part of my flat is multi purpose – my home; the support worker’s work station. Believe me, this takes some head adjustment and I do struggle with it at times.

 

Sharing the space with non family members is something that I noticed my friend didn’t have to do. My fridge has the support worker’s food and drink in it as well as ours’; Steven’s wardrobe has the support worker’s change of clothes hanging up when they do an overnight; my bedroom chair has the support workers’ swimming stuff as they do five swims a week with Steven. It couldn’t be any other way but it can feel intrusive.

 

At 9 o’clock the shutters come down on the workplace and Steven and I have a home to ourselves. In 18 months, nothing that I couldn’t cope with has ever happened in that time; in fact, I think Steven really likes the time when he has me all to himself. Last night, Steven went up for bed at his usual time of 9.45pm. We do his “Waltons” routine for 10 minutes and then he was fast asleep. I’d been looking forward all day to going back downstairs after he fell asleep and catching up on my Lewis boxed set. I gathered supplies; a glass of beer and a large bar of Galaxy. I laid my duvet expectantly over the sofa, got myself comfy and them felt a sharp poke in my back: one of the support workers had left his umbrella on the sofa. It actually drew blood. The moment had passed and I came upstairs and started to write this blog.

 

In all yesterday, I was awake from 6am to 11pm and only had two hours when our home was just a home. And even that two hours was interrupted by a lethal brolley. Home sweet home.

The Vaccuum of The DoLs

Today saw the publication from the NHS Information Centre of their third annual DoLs report for 2011/12. (The full report is here: http://www.ic.nhs.uk/webfiles/publications/005_Mental_Health/dols2011-12/mca_dols_eng_2011_12_3rd_rep.pdf)

 

There’s an awful lot of figures and statistics in this report: I needed a Red Bull to help me get through it. This blog is just a series of thoughts and questions that popped up for me whilst trying to absorb it.

 

The first big stat is that during 2011/12, 56% of all DoLs were authorised; meaning of course that 44% weren’t authorised. So, here are my first two questions:

 

1. How many of the 56% of DoLs authorisations were challenged? I think it would be rash to assume that all of the 56% were necessary, appropriate, or indeed lawful.

2. What happened to the 44% that weren’t authorised? Presumably these people were in a care home or hospital – are they still there but not under a DoL?

 

The number of authorisations has increased steadily since the safeguards were introduced in 2010. However, for the most recent quarter (December 2011 to March 2012), the figures went down for the first time. Is it a coincidence that this drop coincides with the Cheshire ruling (Thank goodness, that is going to appeal). DoLs are only meant to be authorised for up to a year, so what have happened to all those people whose DoL has passed a year? No explanation for the drop is given in the report, which I find quite worrying.

 

As in previous reports, there is an enormous variation in the number of DoLs sought across the country. The latest report reveals a variance from 0 to 463. I find it very hard to believe that the LAs who declared 0 authorisations, don’t have anyone in their care homes or hospitals who are being deprived of their liberty? Without external scrutiny, it must be quite possible for people to be left in a home or hospital with no safeguards being applied. There are at least two members of the Get Steven Home group who have relatives in a care home and both the person and their family don’t want them to be in the home but have found it impossible to persuade the LA to authorise a DoL. And without a DoL, a challenge becomes very difficult.

 

Following on from that, there isn’t a single mention in the report of IMCAs. There are enough judgements out there now stressing the entitlement to an IMCA but they obviously weren’t considered important enough to make it into the report. So, my question is how many of the 56% of authorisations were referred to the IMCA service?

 

I had an horrendous experience with the Hillingdon Best Interest Assessors but having attended the Yorkshire DoLs conference and having met several committed assessors on-line, I know that my experience wasn’t typical. One of my favourite stats is that 93 DoLs authorisations were not granted by the supervisory body but the BIA insisted that a deprivation of liberty was occurring. That shows that 93 people were prepared to challenge the supervisory body. The report does flag up the potential conflict if interest for BIAs when they are employed by the supervisory body. I don’t believe the BIAs in our case were incompetent; I believe they were weak and allowed themselves to be told what to write by their managers. Hopefully, they are in the minority.

 

I know it wasn’t the remit of the report but I would love to know some of the stories behind the statistics. How else does one make sense of the 44% of cases where a DoL wasn’t authorised? What does that mean for the lives of those people? Have their lives improved or got back on track as a result of not being under a DoL? Someone wrote to me the other week about her son who has been in a “temporary” care home for four years; he went there for an assessment. Last summer after several DoLs cases hit the news, his parents asked the home to consider a DoL. They met with the BIA for four hours and he agreed that a DoL was occurring. However, his report was squashed and a DoL wasn’t authorised. The young man is still in the home without a DoL.

 

Overall, the report leaves me wanting more. I’d love someone to take the DoLs by the scruff of the neck and review them from beginning to end. The NHS report relies on the returns from LAs and NHS trusts. This is only one part of the story. What about the monitoring of the initial stage of the process – does anyone look into the fact that some LAs aren’t authorising a single DoL. Why? Where are their residents safeguards? And what about the data from the courts? Are LAs/NHS trusts referring all matters of dispute to the courts? How many people have been released from their detainment by the courts? These seem to me important figures to understand how the Act is working?

 

This report feels like it exists in a vacuum. I feel like I’ve read one part of a trilogy but the other parts aren’t available to me.

Who Let The Logs Out

I’ve made a decision. It’s a decision that will probably get me into trouble but I’m in a “what the fuck” mood.

I’ve written before that my life consists of recording every single aspect of Steven’s life for the professionals involved in his care package to scrutinise. Here is the current list of logs we have to keep:

1) Diet Log: Every single piece of food or drink that Steven consumes is recorded for the dietician.

2) START Incident Form: This is a very thorough document that goes into fine detail of any incident (or “near miss”) of Steven doing something untoward. This form goes to the psychologist and the positive behaviour team.

3) Daily Activities: This lists everything that Steven does during the day from having a bath; going to the gym; watching Daybreak etc.

4) Independence Logs: This is for the occupational therapist and covers anything that Steven does for himself and includes: applying deodorant; putting his clothes into the washing machine; packing his swimming gear into his bag.

5) Mood & Behaviour Logs: Another one for the psychologist – every mood change is carefully recorded and reasons why he might go from content to anxious considered.

6) Social Story Monitoring Chart: This is for the speech therapist and traces Steven’s reaction to the “Night Shift” story by recording his reaction at four stages during the course of the narrative.

7) Monthly Log Summary: Everyone gets a copy of this. It’s a monthly summary of any incidents of challenging behaviour.

 

I’m sure you’ll agree that’s an awful lot of recording. We don’t live in a house – we live in an observation chamber. It’s a life under a microscope. It’s a good job that Steven doesn’t understand irony because one of his favourite music videos is the Simply Red version of The Air That I Breathe (http://www.youtube.com/watch?v=hfbAKZTM3-A). That’s what our life feels like most of the time.

As I write this, Steven has been back at home for 542 days, which means that we have completed 542 daily logs. 542 times someone has written that Steven made his bed or had a glass of milk at 5pm. For the first four months, I religiously scanned these documents and sent them off to the professionals for their observations. And for the first four months, I didn’t get a single response, except for the suggestion that the forms be extended to include even more data. So, I stopped sending the daily reports and now, once a month, the support worker’s manager collects them and files them away somewhere.

I really like Steven’s dietician; she’s a warm-hearted, down to earth woman. She did initially analyse the daily diet logs and recommended nine changes to Steven’s daily intake. Not rocket science; just good sensible advice. I implemented all the suggestions and more, but unfortunately Steven’s weight gain has accelerated since the diet began. And that is the end of that input, although, I’m still asked to record everything he eats or drinks.

My guess is that the council use students on placement for their SALT and OT posts. We haven’t had an occupational therapist since before Christmas but up to that point, their emphasis had been almost compulsively focused on encouraging Steven’s independence. The big project of 2011 was pizza making and I got through a whole pack of printer paper recording the progress of that activity. The process of making a pizza was broken down to 28 stages and each stage had to be marked on a scale from 0-5, depending on Steven’s skill and commitment to the task. Since December, my independence logs probably disappear into a person centred void.

As I described in my previous blog post, my big problem is with the psychologist, who is clearly still in litigation mode rather than support mode. We meet every two months where she is ever critical of the lack of information contained in the START incident forms and instead puts her spin on our life with phrases like: “an escalation in aggressive behaviours”. She doesn’t mention the monthly summaries where the figures last month shot through the roof from 2 incidents in May to 3 incidents in June! She has been on our case since Summer 2010 and I don’t think I’m being unfair when I say that I cannot recall one single positive contribution she’s made in two years. But the recording forms are probably three times as long as they were two years ago.

Anyway, I’m ranting. What is my big decision?

Last week, we spent five days in Great Yarmouth. I did all the packing on Sunday night and when our support worker arrived on Monday, he put the big blue binder containing all the forms/logs into the suitcase. I took it straight out again. I wanted to experience five days out from under the microscope. And it was wonderful. One meltdown when I went to get the keys to the caravan and waited in a queue for 80 minutes and a mini meltdown when Steven realised that they didn’t have a ghost train at Pleasurewood Hills. Both meltdowns were contained and lasted about 20 minutes each; that’s 40 minutes out of the 7200 minutes we were away.

I’m not doing any more logs.

I will use the big blue binder to file the utility bills instead,

If someone asks me what Steven had for breakfast, I will rely on my memory rather than a log.

You can see from this narrative that the piles and piles of paperwork are not about analysis or professional intervention. It is simply recording for recording sake. When we were in court, Hillingdon made a big thing about me “under reporting incidents”. That was their only explanation for the enormous increase in incidents whilst Steven was in the positive behaviour unit. I was able to truthfully say that I had never once been asked for the logs in the 18 months that they had instructed me to keep them. Nobody had been interested.

Perhaps I expect too much. Perhaps I am wrong to assume that the exercise has any other purpose than recording an autistic man’s life. Perhaps I’ve mis-interpreted something as the king’s new clothes. And perhaps cosmetic intervention is the best that can be offered.

One thing that I’m sure of is that if I had been working with one of my clients for two years and they couldn’t think of one valuable intervention I’d made, I’d be deeply ashamed.

Like Mick Hucknall broke free from his observation bubble at the end of the Simply Red video, so I want to release myself from a life of claustrophobic scrutiny. It would be really nice for Steven and I to watch an episode of Mr Bean without the event being recorded on a log. It would be even nicer for Steven to have a meltdown and not feel that recording it will be used against him in the future.

So, apart from a chocolate Yuletide one, the Uxbridge house will now be a log free zone.

 

CRAZY POSTSCRIPT:

I wrote this blog during a gap at work this morning. I’ve had the idea of stopping the logs since we were away last Thursday but haven’t mentioned it to anyone.

I got home today just after 1pm and Steven was out with his support workers. Because it usually holds such a prominent place on the dining room table, I immediately noticed that the massive blue binder was missing.

This is what happened. Probably at exactly the same time that I was writing this blog, Steven was getting very agitated about me going out this evening and threw the folder out of the living room window. We live in a first flor flat, so it landed in the hedge below. There was just the one support worker on duty at the time, so he couldn’t go out and retrieve it and by the time the second support worker arrived, the whole thing had gone missing from the hedge. A few pages of daily logs were stuck in the leaves but everything else was gone. No risk assessments. No incident reports. No behaviour management plans. No record that Steven has had bananas, grapes and satsumas 542 times for breakfast.

Now, you tell me – who in social services is going to believe that story!