The milkmen of human kindness

nsw

Firstly, if you haven’t read Mark Nearys fantastic book ‘Where Have All the Milkmen Gone’ then we think that’s a good place to start. Mark totally gets it when it comes to social work for Steven. He doesn’t want someone who thinks they know Steven and Mark better than Steven and Mark know themselves. He doesn’t want an admin officer for a social worker or someone who can broker care (although he does want the awful bureaucracy removing!). Mark doesn’t want someone who can interpret other professionals jargon. Mark isn’t looking for a mate for him or Steven. Nor is he looking for someone to relay decisions made by the great and good at panels in locked away towers. Mark wants someone alongside Steven. Someone batting for him. Someone who when Mark isn’t there is absolutely going to advocate for his sons wishes, feelings values and beliefs in a way Mark knows Steven wants. Crucially, Mark and others, want someone on behalf of the state (Local Authorities  or NHS – it shouldn’t matter) who totally get and love the fact that Mark and Steven love each other. The thought of standing in the way of their relationship should be as abhorrent as the feelings generated when you hear Mark talk about those who separated Steven from his dad. Whether it’s the principles of the MCA, the Articles in the UNCRPD or the Well Being principle in the Care Act, the overriding ethos is that the state should not interfere with the family life. Our role is to promote it, protect it and if possible to enhance it… And then get out of the way very quickly!

However it still looks like we are a million miles away. More evidence is coming to light of the routinised institutional nature of human rights abuses which are taking place in the name of so called care and treatment.  #underlockandkey was the latest in a series of reports on what is becoming an all too familiar story of families heart breaking distress.  There is an ever expanding list which is compelling and which identifies consistent themes including:

So, we change the size of our institutions from big asylum to small group home, and the uniforms are all but gone but the practice is frozen in time.  We continue to debate about how it isn’t enough to just build new types of institutions  – and we agree that a bigger shift is needed in mindsets if learning disabled people are to genuinely experience their full range of their human rights. Medical training still appears to over emphasise that clinical autonomy is the more important in decision making than the views of the person.  This has to change. Social Work training is grounded in human rights and individual autonomySocoal Work could potentially be the challenge needed. Since the early 1980s we’ve been talking about Social Workers becoming a named person providing advice and advocacy for people.

So many people have a named social worker and have done for years. But what’s changed?

Whether we are named Social Workers or not we are in the heart of a culture which families who are brave enough to speak to the press about their experiences are telling us is immersed in the ways of the old institutions. We no longer chase the doctors coattails, walk along wards or dormitories in large Victorian buildings but are we still effectively perceived by people and their families as still prowling the corridors, ensuring compliance and often crushing the hope they have of a loving family life.

The  Department of Health’s vision for adult social work  is the most recent attempt t0 define a role for a Named Social Worker. 6 Local Authorities are piloting the role as describe here – https://lynromeo.blog.gov.uk/tag/named-social-workers/

Social Care Institute for Excellence are reporting here on the outcomes so far from the pilot http://www.scie.org.uk/social-work/named-social-worker.  It is still early days,  but from our involvement this feels like something important is being tested.

Social work is at a crossroads. What do we want the Named Social Worker to be? More importantly, what do people with a learning disability and their families and supporters want their Named Social Worker to be?

Self-advocates have told us that they want their Named Social Worker to be there for them. They didn’t see the social workers in the heroic role of fighting medics to prevent admission to an ATU. People with a learning disability that we support don’t know what an ATU is right up until the point where the options have been exhausted, the ‘risks’ seemingly too great and the door locks behind them. The people we spoke to wanted a social worker to be, well, a social worker. The kind of social workers we think social workers want to be; a really good one. One who can speak about love without feeling embarrassed.

For ‘Named Social Workers’ read ‘good Social Workers’ or moreover,  Social Workers who are legitimised to be exactly what they have trained to be compassionate, kind and on the person’s side. Social Work has a unique role and position within the system and it is designed to be the safeguard against people being marginalised. Social work is steeped in an education of social justice, empowerment, human rights and an unequivocal and unashamed approach to helping people to remain as independent as possible and close to the loving support of their families and friends. Ensuring that is our unique role. The only safeguard that is needed is to keep people safe from the system intervening into family life. Whether social workers are ‘named’ or not, they need to be really good social workers regardless.

ethics-and-justice

Advertisements

Someone to Safeguard

The referral was pretty bog standard these days. The neighbours didn’t get Elsie’s permission for any of her details to be referred to Social Services. In truth it had never crossed their minds they’d be asked for this. When pushed by the call centre about the issue of consent they said that they didn’t think they needed her consent and that this was a matter that ‘the Council must take seriously for everyone’s sake’. And then behind the thinly veiled threat to act the neighbour stumbled upon four little words. Magic words. Words that suddenly change the meaning of everything and words that seemingly come with their own legislation, procedures, judges and juries. ‘It’s a safeguarding issue’. And boom, there it is. Elsie, aged 87, never known to the Council, never having failed to pay for council services or any other tax that propped up with welfare state that she didn’t really partake in, was known. Consent overridden. Case opened. Within moments Elsie had an electronic file. Elsie had a Reference Number. And Elsie would receive an automated letter thanking her for contacting the Council and she would receive a call within the next seven days. All done within five short minutes from the start of the phone conversation. Within ten minutes Elsie was on waiting list of other Reference numbers waiting to be allocated to a Social Worker and sat on the computer screen of the Manager. Whether Elsie used services or not, from that moment on to the day of her death, nothing was clearer – Elsie was a Service User and there was a record to prove it. There was, as far as everyone was concerned, someone to safeguard.

The social workers went in twos to the address. No-one was quite sure why. The referral mentioned that Elsie had got cats but there wasn’t any belief that the cats were dangerous. Perhaps the second social worker was there because social workers love cats. The referral said the house was ‘dirty’, ‘things everywhere’, ‘cluttered’, ‘soiled pads in the garden’ and Elsie, although not seen for some weeks, was wholeheartedly felt by the neighbours to be dirty herself. ‘She’s self neglecting’.

Having knocked at the door and getting no response the social workers pushed slightly at it and the door opened. A cat ran out and then back in again. No sign of Elsie in the hallway. The social workers called her name, walking gingerly through the hallway, past a sideboard with some framed pictures of a moustachioed man with the ‘Geraldo, King of Swing’ emblazoned on them. Calling out her name and holding out their ID badges the social workers continued inward.

Elsie was in the kitchen. She smiled when she saw the social workers and beckoned them in still further. The social workers introduced themselves and whilst doing so Elsie kept on smiling before raising her hand as if to stop the second social worker saying their name. Elsie bent forward and placed her right ear up against what looked like a radiogram from footage used to show listening to the broadcasts of Prime Minster Churchill telling them they wouldn’t surrender. Almost trance like Elsie’s smile remained fixed as she listened to the radio. Elsie probably listened to the radio for a full three minutes, to the social workers, observing the cats, the newspapers (one from May 1991 with a picture of Paul Gascoigne on) and moving their feet on the sticky floor tiles, the three minutes felt like a lifetime.

When Elsie moved away from the radio she asked the social workers ‘who are you again, love?’. The social workers explained who they were and said that they were there to see if ‘she was alright, you know, see how things are’. Elsie said she was fine and asked if the neighbour had asked for them to visit. ‘She’s lovely, like that. Looks out for me’. Elsie explained that she had lived in the house all her life. Her parents, who she said ‘died recently, in 1971 and 1975’ had left the house to her. The social workers listened. They wanted to be respectful, they had questions of course (and they had lots of boxes to tick) and had already decided that things ‘weren’t right’ but they listened nevertheless. Half way through talking Elsie’s eyes suddenly lit up. ‘John!’ she said. Within moments Elsie was back to the other side of the kitchen, head propped up against the radio, same expression on her face, which now to the social workers seemed almost rapturous. This time a longer a wait. Five minutes. Elsie broke her concentration just once, to beckon the social workers to sit down. Neither did. Elsie didn’t notice or care.

Elsie said that John worked for the radio. He was in his late forties and his job was a ‘broadcaster’ and that each day John ‘either announced the news or introduced big bands… sometimes both’. Elsie said that John was based in London and he still lived there. She said John sometimes slept in the radio station and sometimes broadcast during the night, but not usually. The social workers continued to listen but really wanted to talk about the cats and Elsie’s ‘daily routine and keeping clean’. More in an effort to wrap the conversation up about John and move on to the matters at hand, the self neglect, one of the social workers asked a question. ‘John sounds lovely. Is he someone you have actually met and know’? And with that the tone of the conversation changed. Elsie explained that John had spoken to her on the radio for over 60 years. He was her man friend and he was engaged to marry her. Her betrothed. John had promised Elsie that one day he would drive up from London in a white Bentley car and marry her. Their plan was to live in London and take Elsie away from all this, including the cats. Elsie said the social workers could have the cats if they wanted them.

On walking to the door with the social workers Elsie thanked them for coming but they had to go now as John liked to ‘talk to her alone’. Elsie smiled as she shut the door behind them. The last thing the social workers heard Elsie say as the door closed was that John was her man and ‘was not for sharing, goodbye’.

The social workers weren’t inexperienced. One had just become an Approved Mental Health Professional and the other had worked with older people for years. But as they walked to their cars and drove back to the office the silence between them spoke more than any words of completed boxes on the safeguarding form. ‘What was all that about?’
Safeguarding referrals can be complex. The social workers knew that. They also knew that to ‘help’ Elsie they had to get to know her, build up trust etc. So the visits continued throughout the next week. On each occasion Elsie spoke to the social workers but continued to ignore any questions about her health, her wellbeing, her cats and the state of her house. Most questions were met with ‘I know love. John’ll see to it’. All conversations were interspersed with long periods of Elsie listening to the radio and smiling with occasional, knowing nods and some ‘ah’s’ aimed at the social workers as if ‘John’ was further confirming plans that would need to be relayed to the social workers. For the most part the social workers just heard the hiss of the untuned radio. For them there was no voice, no programme and without doubt there was no John. However what bothered the social workers more than this was that there was no progress. No getting Elsie to see what state she was in. No getting Elsie to consent to sorting the house. No getting Elsie to realise the safeguarding issue. The self neglect. The abuse.

Safeguarding doesn’t allow for stalemate or for someone to continue to be abused. It identifies the abuse and through a list of ‘outcomes’ it makes the social workers do something. For the social workers things needed fixing for Elsie. She had a choice. Either Elsie worked with them to ‘improve the situation’ or they would ‘Refer to other agencies’. The case notes were clear. Elsie wouldn’t engage. She lacked capacity to make the decision. It was all in her best interests. The risks were unmanageable. The hoarding was a fire risk. The cats were underfed and the RSPCA would be cross. She needed safeguarding. If only she could see it! She was a problem. The problem needed fixing.

The social workers didn’t seek Elsie’s consent to refer to other agencies. In Elsie’s case the ‘other agencies’ was the Mental Health Team. Elsie was visited by a Community Psychiatric Nurse, who within hours visited again but this time with the Psychiatrist. The social workers received a call ‘How has this gone on so long? and ‘she’s in a terrible way, totally delusional, paranoid ideation’ and is ‘refusing all treatment because of this bloody John thing’. The next call was to the AMHP. Pink papers in the bag, the Mental Health Act Assessment was to take place that evening.

The Ambulance couldn’t stay and eventually the police were called. 87 year old Elsie was escorted out of her property by two young police officers. One of the police officers had to switch the radio off during ‘the incident’ in the house. He at least had the foresight to give the radio to Elsie and reassured her that she ‘could hold it’ in the back of the car. It was the only bit of humanity Elsie ever witnessed either that evening or throughout her entire dealings with the ‘support’ agencies.  Section 2 completed. Safeguarding outcome achieved. No more self neglect. Someone had been safeguarded.

The first thing Elsie did on the ward was to find a plug for the radio. John was there. Reassuring her and helping her to stop crying. And that’s how things stayed for a number of weeks. The medication was taken, Elsie complied. The nurses moved on to the next person, Elsie listened to John. There was no more worry about Elsie from the neighbours, the problem had been fixed. No more self neglect, no more self to neglect. Elsie’s care plan said ‘needs all cares’. And that’s what she had. All cares attended to and a continued love affair with John.

The discharge planning never once considered home. Home was where the ‘multi-disciplinary team’ had felt that the bad thing happened. Home was where the cats had had to be removed and where the social workers had found Elsie’s love letters to John, which had ensured merriment on the ward due to the details that she went into about her feelings for him. The self-neglect would re-start at home and why risk things? Elsie was happy enough. Everything was fixed, apart from the John thing.

The Care Home never fully read the care plan about Elsie and the new social worker had not really written much up about John and what had happened at home. The radio didn’t go with Elsie to the Care Home. Elsie noticed this on her first day at the home. However instead of asking for the radio Elsie screamed for 8 hours. In the end she was given medication. The Care Home didn’t call the hospital or speak to the psychiatrist about how distressed Elsie was. They made one phone call that day, which was to the social worker requesting more funding ‘due to the screaming’ and the impact this was having on other patients and staff.

Over the next 3 months Elsie moved into two different care homes and was returned to hospital following a fall. The radio was never switched back on.

Elsie died in a care home. It was four months, five days and 6 hours after the phone call from the neighbour.

Lord Justice Munby stated ‘what is the point in making someone safe if it merely makes them miserable’. In ensuring Elsie was miserable, we were unfit to even ensure her safety. John did exist for Elsie and we never saw that. John was the risk management plan. John stopped Elsie self neglecting, not the other way around. Elsie was the expert in her own situation and had an 87 year start on the rest of us who tried to study her and fix her within weeks. John was her flickering light of hope which we extinguished in the name of safeguarding people from themselves. I hope she saw John again somehow.

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

Find out more