Winter – Part 3

Each year the headlines going into the NHS winter seem to forecast a bleaker outlook.  

Whilst the 1st October still feels very autumnal, the build up to this years NHS winter is underway.

Which is worrying if you are responsible for arranging services for people who will need some extra support from adult social care to help them home from hospital.  In adult social care we rely on so called winter monies to fund out of hours, home care, intermediate care and transitional beds, all of which get people out of hospital and back to their communities so they can complete their convalescence and recovery.  This winter however the signs are that these funds won’t reach social care.  The NHS winter is biting and hospitals are needing every penny health commissioners can find.

This is further destabilising fragile social care providers, many of which are small local businesses who are really struggling to make things stack up.  As reported by the Kings Fund & Nuffield Trust social care providers face huges pressures in terms of retaining staff, maintaining quality and staying in business.

social-care-for-older-people        Social Care for Older People (home truths)

Our experience is that small, local providers are full of caring, passionate people who are trying to make social care work despite the challenges.  People like Mark, whose story from 5.05 minutes into this video about what happened on Boxing Day 2015 when the River Calder broke its banks left me speachless when I first heard it.

Mark and his team faced the worst that winter could throw at them.   But driven by deeply held convictions that it was their job to care, they are made social care work in the most challenging of circumstances.

Going into this winter we are anxious, but we haven’t lost hope.  People have an incredible capacity for caring and to find humour and happiness in the bleakest of circumstances.

winter-okie-aged-80

So going into the social care winter 2016 here are our suggestions:

1.  Remember why you work in the social care sector.  You care.  If you didn’t you could earn more somewhere else.

2. Nevet forget you are a guest in people’s lives and this is a huge privilege.  The minute it stops feeling that way it is time to move on.

3. Create space with your friends and coworkers to talk about the people you are here to serve and support.  Every person is a bright spark of colour in your life.  Sharing those sparks might catch a fire to keep you and your colleagues warm during the darkest of days when the pressure is on.

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.

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.