Total Eclipse

In the main, people working in care choose to do because they want to be caring. But sometimes they don’t support people to live the lives they want to lead. Perhaps it’s the surprisingly ordinary, possibly even dull nature of an ordinary life which leads to workers talking up worries.  Leading to a reframing of the ordinary act of asking another person for advice or help can be turned around and become a problem to worry about, evidence of a dependency, a vulnerability the person needs protecting from.

A recent Community Care article highlighted the case of a Local Authority which breached a man’s human rights by forcing him to stop his sexual relationship with his wife when they asked for help.  Like any other ordinary couple they wanted to start a family.  But when they asked for help professionals began to worry.  Despite the couple having been married for years, a decision was suddenly taken that the learning disabled husband lacked the capacity to consent to sexual relations with his wife.  In attempting to turn around the implications from this hugely intrusive decision, the Local Authority was to arrange access to sexual health education  but then somehow failed to provide him with the education he needed.

https://twitter.com/CommunityCare/status/899307540470804482

The couple were kept separated for a truly shocking amount of time because the workers involved failed to understand their role in upholding their rights.  They had been married and lived in a mogonomous relationship for years. Just pause for a minute and really let that sink in.  Years.

Lucy Series has written a brilliant analysis of the issues – https://thesmallplaces.wordpress.com/2017/08/23/the-price-of-protection/amp/

However, equally brilliant (as always) was Mark Neary’s take on the case –

Mark’s timely reminder that married life is in the main outstandingly ordinary in nature, challenges the values behind the professional decision taken in this case to singularly focus on one aspect of the couples relationship when deciding not to support their request for help with fertility treatment but to instead force them to sleep apart for over a year.

The facts of this case aside, for spcial workers it is another prompt to be careful to avoid the “protection imperative”, that moment when professional worries eclipse clear and objective reasoning.  See Justice Baker in the case of CC v KK & STCC

Professionals and the court must not be unduly influenced by the “protection imperative”; that is, the perceived need to protect the vulnerable adult…. There is a risk that all professionals involved with treating and helping that person – including, of course, a judge in the Court of Protection – may feel drawn towards an outcome that is more protective of the adult and thus, in certain circumstances, fail to carry out an assessment of capacity that is detached and objective.”

If you think the community care report is of an “unusual case” you may be disappointed.  A self advocate recently described how he and his partner were subjected to 360 questions by professionals when they decided they wanted to become parents “because we have learning disabilities”.

There are many aspects to being a parent.  The right to experience all that goes with being dad or mum is a hugely important part of being human. Perhaps there is more we can do to make accessible information to those who want it beyond that which covers to act of potential conception.

In case you find yourself facing a similar scenario the link below will take you to accessible information and resources on sexual health and other things – http://www.btm.org.uk/resource-category/health/

And here is the RiPfA case law summaries on working with parents with learning disabilities – https://www.ripfa.org.uk/resources/case-law-summaries/?platform=hootsuite

Article 8 ECHR right to a private and family life

Human Rights Act 1998 right to marry and have children; right to respect for a family life

UNCRPD right not to be discriminated against in marriage, family and parenthood

Care Act 2014 the general principle of wellbeing takes into account relationships

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Happiness

Where do you start in the search to define happiness?  Why would you even try?  How arrogant must you be to think you could make a determination as to what constitutes the basis on which another person would be happy?

The World Health Organisation has been exploring ideas about social and economic progress being measured in terms of nations “happiness” levels for some time –  see the report of the Commission on the Measurement of Economic Performance and Social Progress which proposed that states should shift from measuring economic production to measuring the well being of citizens as the key measure of how sustainable their economic and social policies were.  Recommendation 2 in the report is that social policy should emphasise “the household perspective”.  The UK benchmarks above average for most well being measures, however performance is below average for mental well being (20th of 27) and child self-reported health (24th of 38).

Happiness

Reading about the search for a sustainable home for his son Steven from @MarkNeary1 this last month has emphasised just how important that household perspective is.  Reading a day in the life of Mr Neary however is more than that, it is also a reminder that happiness and mental well being are found in the small things, the stuff that you often take for granted.  That being able to go to the pub and have a pint is definitely in Mark’s best interest and therefore in the best interests of his son Steven.

Which takes us to the question, if social care policy and law is about well being and happiness, is social care in the happiness business?  See this from digital story teller @JohnPopham who visited an older people’s care home earlier this week.

 

Improving subjective well being has been a focus for UK social care policy leading up to the Care Act (2014) which introduced the legal duty that Local Authorities are responsible for promoting well being, that people being happy is in their best interest:

“The general duty of a local authority, … in the case of an individual, is to promote that individual’s wellbeing”.

The first legal challenge to how well Council’s are meeting this new general duty is due in Court this autumn, following Luke Davey and his mother having won the right to bring a judicial review of changes made by Oxfordshire Council to his support.  Luke defines well being in terms of being able to get a drink and go to the toilet without the need of his mum having to assist.  What is striking is how far away such ambitions are from the lofty, ambitions of those who believe that they can at scale and pace transform the system of health and social care.

When we forget that it’s the small things define happiness and mental well being, do we start the slide that leads us away from seeing people as being fully human, is it that moment of loosing sight on what constitutes happiness which leads to unhappiness, captured so distressingly in extract from Tony Osgood writing about “serviceland” that strange place where commissioners think they know better than people about what they want and need in their lives:

jane isn't happy

Service land makes for uncomfortable reading.  It leaves commissioners of “care and support” facing a series of uncomfortable questions.  Do we sometimes get confused in social care about the limitations of our legal powers? Do we confuse the role of Social Workers as being a form of “soft police”, dressing up interference in people’s lives as being a form of safeguarding of people’s well being.  Do we focus on physical aspects of safety to the detriment of mental well being?  And in doing so, do we create the conditions which lead to unhappiness, which lead in a self-perpetuating cycle to more “challenging behaviour” which leads to us thinking we need to commission yet more services to meet the very needs we have created? Service land is a place of unhappiness. How typical is it of people’s experience?

LJ Munby in the case Local Authority X v MM & Anor (No. 1) [2007] EWHC 2003 (Fam) reminded us that in keeping with our positive obligations to uphold the UN Convention on the Rights of Persons with Disabilities, people’s wishes, feelings and beliefs must be taken into account when determining what is in their best interests (para 121).

“The fact is that all life involves risk, and the young, the elderly and the vulnerable, are exposed to additional risks and to risks they are less well equipped than others to cope with. But just as wise parents resist the temptation to keep their children metaphorically wrapped up in cotton wool, so too we must avoid the temptation always to put the physical health and safety of the elderly and the vulnerable before everything else. Often it will be appropriate to do so, but not always. Physical health and safety can sometimes be bought at too high a price in happiness and emotional welfare. The emphasis must be on sensible risk appraisal, not striving to avoid all risk, whatever the price, but instead seeking a proper balance and being willing to tolerate manageable or acceptable risks as the price appropriately to be paid in order to achieve some other good – in particular to achieve the vital good of the elderly or vulnerable person’s happiness.

What good is it making someone safer if it merely makes them miserable?”

The #7DaysofAction campaign is exposing that unhappiness is the experience of many within the health and social care “system”.   36 families have now come forwards to tell their story.  The campaign will be telling these stories in October, and as social care professionals we will be listening.  There is a social care commissioner and social worker involved in each and every story, but crucially, will we be able to detect the social work or will we be hearing something else?

We will be supporting the campaign.  Please join us.

Picture is “Things that make me laugh”. Artist Will Turner aged 9.

It’s more complicated than that….

complicated

Monday 18th April 2016 marks to the start of a campaign on the part of families who have a member of their family in an Assessment and Treatment Unit (ATU) – see http://www.rcpsych.ac.uk/pdf/AIMS-LD%20Standards%20-%20Second%20Edition.pdf for the standards that define an ATU.

3,000 people.  Members of 3,000 families who love them.

As commissioners and social workers, in our local authority next week we will be asking ourselves the question – who do we know about in an ATU who we have responsibility for and what are we doing to get them home?

That we have to start by asking the question – who do we know about in ATUs – matters in a way that will no doubt frustrate those of you who are taking time to read this blog.  You would reasonably expect, rightly so given Care Act responsibilities, that we should automatically know who is an ATU.  However, given the routes into ATUs, as local authority commissioners we don’t necessarily do so, which leads to the near invisibility of people who are detained in in-patient settings – see http://chrishatton.blogspot.co.uk/2015/11/impatient-inpatient.html and http://chrishatton.blogspot.co.uk/2016/01/out-for-count.html

There are several reasons for this, which are not given as an excuse, but hopefully will help shed some light on some of the issues faced by social workers and local authority commissioners which other, clever people than us, can help us with.

Firstly, the lead commissioners for placements in ATU’s aren’t from Local Authorities.  Inpatient admissions for adults with a learning disability are commissioned by health services (NHS England and/or the CCG).  CCG commissioning leads responsible for inpatient admissions, are also usually the people who lead on commissioning of Continuing Health Care funded community support.  Sometimes the Ministry of Justice are also involved.

Inpatient Commissioners

Health commissioners do not as a matter of course share details with Local Authority commissioners about who they have placed where.  There are lots of explanations for this – but I suspect the most important one is that on a day to day basis CHC is the fault line which divides health and social care.  CHC is the single biggest barrier to integrating a seamless, personalised support model around the person which puts them in full control of their support.  CHC is controlled to the nth degree – see the really quite odd policy position of CCGs “creating a local Personal Health Budget offer” for how you can choose to spend your PHB- https://www.england.nhs.uk/healthbudgets/understanding/rollout/ – either you are in control or you aren’t – an “offer” defined and limited by commissioners is not personalisation as self-advocacy groups define it.   The conflict on the front line generated by very different, deeply held assumptions between health and social care about who should be in control of defining what support is offered to get someone home, and crucially who has to pay for it, isn’t conducive to building the sort of trusting relationships required to foster cultures of collaboration.

Secondly, CCG commissioners don’t talk about ATU’s – they talk about “tiers” of health services to “manage” inpatient admissions.  4 tiers.

4 tiers

And at the top of the 4th tier, there are 6 catagories….  Confused yet…?  Still with me…?  See the Royal College of Psychiatrist’s explanation of why ATU isn’t a good description for forensic inpatient services as it is ‘more complicated than that’ – http://www.rcpsych.ac.uk/pdf/FR%20ID%2003%20for%20website.pdf

category 1: high, medium and low secure forensic beds

category 2: acute admission beds within specialised learning disability units

category 3: acute admission beds within generic mental health settings

category 4: forensic rehabilitation beds

category 5: complex continuing care and rehabilitation beds

category 6: other beds including those for specialist neuropsychiatric conditions

As a local authority social worker or commissioner the focus of any discussion with a CCG CHC Lead who is tasked with arranging for a discharge from an ATU is about how commissioners arrange for people to ‘step down the tiers’.  This is code for how people move through the funding system from the NHS to social care paying for the person’s support.  This is particularly important given the Transforming Care agenda – to qualify for what NHS England have oddly chosen to call ‘dowry’ funding (I find the use of the word dowry to be a very odd one indeed in the context of getting people home from hospital), people need to have been resident in an ATU for over 5 years.

4.44 dowries

According to Chris Hatton’s figures – https://theatuscandal.wordpress.com/some-atu-facts-figures/ only 17% of people currently in ATUs would qualify for these funds.  Clarity over how the support home is going to paid for the other 83% of people is a hugely important issue if we are to be able to make it happen for the 3,000 people who just want to go home.  If I was a policy maker, I would do something very simple – I would mandate CCG spend on learning disabilities into the Better Care Fund (the finance data was collected last summer by NHS England so they know what they need to do to make this happen….)

So, what could you do as a social worker or local authority commissioner during the week:

  • Read and make space to reflect on the 7 Days of Action blog https://theatuscandal.wordpress.com/about/ 
  • Find out how many people in your Local Authority are placed in ATUs
  • Of these, find out how many meet the definition for support to get home under the national Transforming Care programme
  • Ask who the allocated social worker and commissioner are who is working to get the person home
  • Speak to those workers and ask them, what specific plan is in place to get the person home and what can you do to help them make this happen
  • As a team, ask the CCG commissioners to confirm exactly how many people are the CCG are aware of within ATUs – and to confirm this number with NHS England who need to confirm it with the Ministry of Justice
  • Don’t be confused by the noise – it is only complicated if you chose to let it be

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