No Further Action

The purpose of this blog post is to encourage social workers to consider how their use of language when writing about or referring to people can impact on practice. It explores some challenging ideas which reference the disability studies literature.

A Guest Social Worker Blog 

When I first qualified as a social worker I had an agency job at a hospital. I got on well with the nurses, I supported the discharge of many older people into care homes and on at least one occasion, it was against the woman’s wishes. She begged me to get her home but it was ok because I referred to ‘common law’ to justify my actions.  Her physical needs justified it and everyone (apart from her) agreed, so into a care home she went, the placement processed in less than an hour.

I jotted down little medical hieroglyphs on my handwritten notes and used medical jargon on the electronic recording systems. People were ‘patients’ or sometimes ‘service users.’ This language protected me from the reality of what I was doing to people caught in the system, lacking power and influence because of their age and disability, unable to square up to professionals like me with our clipboards and our own language. 

Social work with adults can be difficult when people are in crisis and experiencing loss, and they pour their pain into you because there is nothing else they can do.  And so I learnt that dehumanising people through my use of the language of the professional made it easier for me to cope. 

I stopped doing it, very quickly. There was another woman on the ward for whom I was the allocated social worker.  I had never met her but I phoned daily for a progress report. “How is she?” I asked the nurse. “Oh, she’s very poorly today, not fit for discharge,” said the nurse. On my notes, I wrote, “TC ward, Pt med” that is, “Telephone call to the ward, patient medical” (i.e. unwell, not able to be discharged). 

Next day the same call, the same note on her records. 

The third day I phoned, the nurse told me the woman had died during the night. I wrote “Pt RIP NFA”; that is, “Patient dead, no further action”. 

I stared at what I had written and the scales fell from my eyes. If I write about people in this manner, and think of them in this manner, I thought, then what is my treatment of them going to be? 

From then on, all my references to people use titles of respect – Mr, Mrs, whatever the person wants. I am not comfortable with the use of initials or ‘P’ in legal proceedings but the need for confidentiality justifies that I suppose. 

The words in the image above are words many of us professionals use and have used. You will find some of them in guidance from respected health and social care bodies. For example, ‘service user’ is a very common term most people reading this will have used at some point. Is it bad? Not necessarily. But why use the term at all? Or any other term which separates ‘them’ from ‘us’? 

Whatever our opinion, dehumanising people is contrary to the European Convention on Human Rights which is grounded in the basic right of every person to be treated with dignity. The Convention rights, incorporated into UK law with the Human Rights Act, were written after WWII, to prevent the horrors of Nazism from happening again.

I am absolutely not comparing myself or colleagues to officials working for fascists. But we must remain vigilant. The echoes of the call to the special path can be heard when we use language to dehumanise and other people. Unchecked, language can take us towards social extremes. Us and them. We are always superior to them. This is one reason why human rights should be at the heart of social work practice and education.  

After watching the recent Charlottesville riots in the USA, I found myself reading a story I found about a German railway clerk in 1944 who did not consider himself complicit as he wrote in his ledger not of people, but of how many Stücke (literally; ‘pieces’) he had processed through his station for special treatment that day (i.e. how many people crammed into cattle trucks without water or sanitation he arranged to be transported to a concentration camp). In “A Holocaust Reader” (1976) Lucy S Dawidowicz refers to bureaucratic language as “a language that concealed more than it communicated, its very structure and vocabulary buffering speaker and listener from reality.”

This may feel, and hopefully is, a thousand times removed from our use of language in health and social care. However, if a person is described in terms of being a thing (a Downs, a service user, a bed number) rather than a person, is it easier for us to cope with the emotional and physical pain the person is going through and possibly our failure to be able to do anything about it? Does it enable us to sleep at night like the railway clerk. I failed to listen to the woman begging me to let her go home who I processed into a care home; I saw her as a collection of things that had gone wrong and needing to be put right, and discharge to a care home was my solution. 

How we think about people and refer to them can become manifest in our practice.  I once saw someone working in a care home use a cloth to wipe down a table after lunch and then – without a word or any eye contact with this person – she used the same cloth to wipe the face of a woman still sat at the table who had just finished her lunch and had some food on her chin! That worker could only do that if she did not consider the woman to be equal to her, to be a fellow human being. And how many steps is it from treating a person like that, to neglecting her personal care needs, to hitting her, to stealing from her? Because she is no longer a human, she is a thing. But the care worker would probably never have thought of herself as doing anything mean or bad or hurtful.

As a social worker, I am privileged that the state trusts me to do the job I do. Anti-oppressive practice is central to good social work practice but just because we have a professional qualification, it doesn’t mean that we are immune. Far from it, the need to continually critically reflect on our practice and be open to the observations of others, in particular those “others” who we purport to serve, is an essential part of the job. 

The language we use is important because it can very easily be used as a tool to dehumanise people and yet it is also easy to fix. Looking at what we write about people and asking: “would I be happy to read this if written by another social worker about me or one of my relatives?” is a good place to start. 

Suggested reading:

Becoming dishuman: thinking about the human through dis/ability

http://www.tandfonline.com/doi/abs/10.1080/01596306.2014.930021

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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

The Saturday Boy

I am three months into a new job. Its really been hard. All the things you take for granted when you’ve known people for a long time are gone. Its hard having a bad day and no-one knowing you well enough to know that that is what your experiencing without explaining it. Its hard not swearing. Its hard remembering that no-one really knows my sense of humour or my cultural references. It reminds me of all the jobs I’ve ever had from Saturday boy to social worker. It gets easier the less new you are of course but the desire to feel settled, accepted and wanted is strong.

Last week I read a blog from Mark Neary that has preyed on my mind ever since. It was about an incident at home that had triggered a memory for Steven from where he was held (illegally) in a unit away from his dad and where a staff member had casually referred to Steven has  ‘a nasty piece of work’.  That the comments still  upsets  Steven all these years on and made his dad upset too are testimony not only to the powerful spiteful words used but moreover perhaps the intent behind the words. Whether or not the carer believed the words they used to describe Steven is one thing but the intent behind the words, the casual hateful remark towards someone they are caring for, is really quite sickening. For me the words are a reflection of culture in social care that thrives on not allowing people to feel settled, accepted or wanted. We are comfortable with belligerence in social care. We can even deal with hate. But if someone feels settled, accepted and wanted there is a risk that they may be loved and that is considered a real risk in social care. Its easier to consider people has a nasty pieces of work than it is to consider them as people, with the same desires as the rest of us. If we consider people who require social care as people like us we have to consider the totality of that. This leads to a risk that people might be possibly be loved. Love and social care anyone? Words you very rarely see in the same sentence.  

For the last few years of her life my sister had a Direct Payment. It took her a while to find the right person for the role of her PA but eventually she found Christine (not her real name). What amazed me at the time was how much my sister had to hide her relationship with Christine from social care. My sister was an extremely generous person with a  huge personality. Her relationships with people were intense and beautiful. Within weeks of employing Christine my sisters personality and humanity had completely dwarfed the Direct Payment arrangement that was supposed to govern it – it was always going to. Over the years a deep friendship grew but it was always hidden in the shadows of social care. When Christine was diagnosed with cancer it was my sister, the person Christine was paid to care for, who was at the hospital with her holding Christine’s hand as she received the diagnosis and prognosis. As Christine died it was my sister who stayed with her, gently singing to her and reassuring her that her daughter would be cared for. After Christine died my sister became the guardian of her daughter until she was 18. All this, the complexity of the relationship was extremely normal if you knew my sister and Christine. Humanity had completely overtaken the narrow definition we have of people in social care. That the relationship  was completely  hidden to health and social care was not really spoken about at the time because we knew social care could not ever understand it. It didn’t have a form to explain love or relationships or humanity but it did have a form on boundaries, inappropriate behaviours  and people abusing Direct Payments – all things that appear to be quite expected of people who need social care. How could that relationship ever be explained to social care with an expectation that the state would understand it? How do you tell an Audit Officer or a CHC Nurse or a social worker that a human relationship and love were meeting the ‘assessed need’ for both the cared for person and the carer? 

Dealing with love and relationships is really too difficult for social care to contend with so we constantly work in an environment where people are left feeling  unsettled, unaccepted and ultimately unwanted – its just easier that way. It’s a system where calling people we care for hurtful names, such as Steven and Mark experienced, is actually far more comfortable for us to deal with than love. A system where Marks love for his son or my sisters deep friendship with her carer is something that is seen to be so remarkable that it has to be fought for through courts or hidden in shadows. A system where love and human relationships, with all the complexities that they include, are viewed with suspicion and an industrial response to protect people from the very thing that we all strive for in feeling settled, accepted, wanted and yes, lets say the word, loved. 

<And la, la, la, la, la, la, la, la, la means I love you>

Walls Come Tumbling Down

Walls

When you look at these pictures – what do you see?  What do you think goes on inside of them? Would it surprise you to know that these buildings host social work – or would that be no surprise at all?

It is hard to envisage community social work, working cooperatively in partnership with people, when social work is often detached from people based in corporate settings such as those above.  So much of how we understand ourselves and our roles is defined by the people we spend time with.  Who do people in these buildings spend their time with?  Who do they chat to in the lift?  Who do they have a coffee with or chat to over lunch?  Who do they share their hopes and worries and dreams for a different future with?  How does that shape what they imagine their future could be?

Is there another way?   Bob Holman and his wife Annette believed so – http://www.communitycare.co.uk/2015/12/01/social-workers-praised-40-years-outstanding-support-in-poorest-communities/

Social enterprises such as the one that they set up cooperatively, in genuine partnership with people are able to provide creative solutions to local social problems.  As the New Local Government Network has argued – rising demand for adult social care can be tackled 1 of 3 ways:

1 – a wasteland approach – where services cut back to the bone

2 – the wild meadow – where Councils withdraw core services by binding into tighter and tighter partnerships with health, using thresholds to deny access to services – hoping that voluntary sector prevention, self help and navigation services bloom around them to fill the gap

3 – the common – where the Council moves from primary responsibility for maintaining the public offer and estate to one of cooperative approaches shared with communities

The report is here if you want to read more about these options – http://www.nlgn.org.uk/public/2014/the-council-and-the-common-local-government-in-2020/

Although it may not be possible for all social workers and OTs to form their own social enterprise, the very act of influencing the policy and practice of the agencies we work for to ensure that social justice is on the agenda should speak to our core values and training.

And this is happening.  There are social workers across the Country who are working differently.  Developing cooperative approaches with people who have experience of accessing support from social work and occupational therapy services where they stop being “users” of services and become the people who lead it, who practice becomes accountable to.   One such example being People to People in Shropshire who inspired the National Development Team for Inclusion Community Led Social Work programme – https://www.ndti.org.uk/blog/community-led-social-work-devolving-choice-control-and-power

This isn’t about trying to convince you that you want your practice to be accountable to people, or that signing up to a mutual or cooperative approach is the right thing to do.  To really work in partnership with people, you first have to really believe that you want to change the way you think about your practice, be genuinely person-centred and be ready to talk openly and honestly about the fact that everyone makes unwise decisions.  The celebration of not being perfect all the time (and not needing to be so) is the start of a new way of thinking and feeling about the future.

walls 2

Should I stay or should I go?

BBA

 

  • We visited 63 supported living settings and residential care homes to find out what people with a learning disability were doing between 8 – 9pm at night.
  • We asked about whether people had gone out for the evening, were up, were getting ready for bed or were in bed.
  • We also asked about what time people had eaten their evening meal.
  • We found that most people who lived in settings managed by a care provider were getting ready for bed or were in bed when we visited.
  • People who were getting ready for bed or were in bed had eaten an early evening meal.
  • People who were living independent lives with support for their tenancy agreement were not ready for bed when we visited. Some people had gone out for the evening.

 

Here’s the link to the Big Bed Time Audit Paper – http://www.tandfonline.com/eprint/nZmMyCEzNDjqGunKPwcJ/full 

Adult Principal Social Worker Network

This week saw the publication of a piece of research by Elaine James and the Adult PSW Network Co-Chairs Rob Mitchell and Mark Harvey. The research paper titled ‘An inquiry by Social Workers into evening routines in community living settings for adults with Learning Disabilities’ looks at the life when living your life in care settings. This researched involved the collective efforts of overs 70 social workers wanting to understand the reality of the of choice and real lives.

We were extremely pleased to when Paul Richards  ( @Heavy_Load ) of Stay up Late and Gig Buddies fame agreed to write a blog challenging some of the concepts that lead to such arrangements and suggesting what we need to do. What’s clear is that as Social Workers we need to take responsibility for such restricted lives and be part of the solution alongside citizens. Over to you Paul……

Should I stay or should…

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Ten thousand whispering and nobody listening

cat 1

I received my social work qualification in the post just two days before I started my first ever social work post. New social workers, in the days before we defined Newly Qualified Social Workers, were just called a new social worker. The fact that you were newly qualified was never  discussed. I was a social worker. I bought a new shirt for the occasion of my first ever day in the profession. It would have been ironed had one of the children not delayed me by being sick in one of my wedding (now work) shoes.

I met my first line manager in the first hour of the first day. She talked a lot and I was to listen. In fact she even passed me a notepad and pen as she commented that she was surprised I was not noting some of the things she was telling me. In truth I wont have been listening. I can’t listen when people give me instructions. If I get lost and ask people for directions I never listen to a word they helpfully try and give me. As much as I need their assistance I instead find myself concentrating on the kindly direction givers accent or slight whistle when they pronounce anything with an ‘s’ in it or I notice the expression of their passengers face. Whilst nodding and saying ‘yes, turn right’ after they’ve said it to give the impression I am listening I am wondering where they going themselves or where they have been. Now that I would listen to. But directions and instructions far less so. I expect my new superior was telling me about fire alarms that probably wouldn’t go off and the ritual of car parking or maybe even how to pay the tea club. I smiled and nodded and I remember noting something down in the pad she had given me. It will have likely to have been the last one I heard her say in order that it looked like I was listening. My guess is that it said something like ‘ok’. It may as well as said ‘turn right, yes’.

I remember my first ever social work client from that day. She was called Jean. She talked and I listened because she was talking about herself, her life, her ambitions, her present situation and her desires. Jean spent a lot of time talking about her cat. There were no instructions attached to Jean talking, and so I just listened. I asked questions from time to  time, but crucially I listened and Jean just spoke. On my lap I had a Community Care Assessment. This, my boss explained, was where we wrote down relevant points about peoples lives to do ‘The Assessment’. I had heard a lot about assessments in my first morning as a social worker. They were described as the cornerstone, the purpose and the focus of our role. In truth I hadn’t had much in the way of training on assessments at university. There was some mention of Care Assessments and Care Plans but in three years of training, 24 separate 3000 word assignments, two 8000 word portfolios based on two practice placements I rarely mentioned assessments. My training was about our approach, our understanding of people, relationships, the dynamics of relationships, empowerment, advocacy and rights. Maybe I was on the sick on the day they did ‘assessments’? Either way, assessments were a form and forms came with instructions. I wouldn’t have listened.

Half way through week one the boss was clear that my work with Jean needed reviewing. I was invited in to the meeting room and asked to explain where the discharge planning was up to. With my paperwork in hand I began talking about Jean. I had completed the assessment through recording what I had heard Jean say. So half reading from the assessment document and half through memory I talked about my conversations with Jean. I talked about her background and her family, I talked about her husband Bob and his job and how when he retired he died shortly after robbing Jean of the retirement that they planned. I talked about how Bob had helped choose the new carpet that she had tripped on, causing the fracture that led to her fall and how she laughed at the thought that he was getting his own back. I talked about the grandchildren in Australia and how the letters and photographs kept Jean going as well as the 3am phone calls from her granddaughter Laura due to the time difference and how excited Jean felt when she was due a 3am call. I talked about Jeans cat and how when Bob had died and her daughter had gone to Australia it was the main focus on Jeans life. I listened to Jean talking about the life that Jean once had, the life she was planning to have and the life she had now. After I had talked about Jean I waited for the boss to speak. There was a long pause and then she spoke. ‘You may have well as assessed the bloody cat’. She went on to explain that what I needed to assess was the support Jean needed, not Jean herself and certainly not her long lost husband, far flung daughter and bloody cat. I needed to listen to how many times she needed the toilet during the night. I needed to hear if she now thought she needed to be in a residential home. I needed to hear how the care package was going to get her back home. I needed to listen out for who manages her finances and how much money she has. I was genuinely perplexed. I wasn’t trained to do that sort of listening. I didn’t like that sort of listening. That wasn’t the social work I was educated in and in truth I didn’t even recognise that it was social work. But this was my job.

I didn’t speak to Jean again or get the chance to listen to her. Our conversation was converted into an assessment by an experienced social worker. Apparently with a half decent nursing report and a functional assessment from the OT we could just about throw together an assessment that would help Jean be discharged as quickly as possible. The assessment documented that  Jean needed four calls of home care a day. The calls would start anytime between 7am and 11am. Lunch was between 12 and 3. Tea from 3.30 to 7 and bed every night by 10pm. No mention of Bob or little Laura in Sydney or even Audrey next door. On the box that documented whether or not Jean had got any pets it said in bold capital letters NONE.

 

 

All life is an experiment – I am not vulnerable!

friendship

I once worked with a young woman called Emma (not her real name) who had a mental impairment and would sometimes go into town alone, whereupon two young women would sometimes meet up with her. Emma would withdraw £200 from the ATM which she would share with these people. After an hour or so, the two women would desert her. The care home staff where Emma lived wanted to prevent Emma from going out on her own, they said it was ‘mate crime’ and that Emma was being financially abused.

I met with Emma and put this to her. She said, “I know they are not my real friends, they only want my money. I’m not daft.” I asked what would she do if it happened again? She said, “The same probably. It’s worth £200 to me because it feels like I have friends, I can pretend to have friends even if it’s just for an hour.”

Emma’s story made us feel sad and angry that people would take advantage of her and we wanted to protect her. But she did not want us to do that. She had the mental capacity to make the decision and, putting it bluntly, she did not care how we felt.

I also worked with a man who was nursed in bed at home but his son – frustrated with his dad’s deteriorating health – would shout at him. We wanted to stop the son from shouting at the older man, possibly apply to the court to prevent him from visiting altogether, but the man told us and the police to do nothing. He acknowledged it upset him when his son lost his temper but he loved him and wanted him to be around. In time, he died at home with his son visiting him to the end. As social workers with both children and adults know well, from the perspective of the person a not-very-good family is usually better than no family.

Had the legislation been available, we could have over-ridden their decisions to protect them. They would have been protected from abuse, so we would feel better, but would Emma or the older man feel better? If a capacitous person wants our support then we give it; if they don’t, we must walk away, no matter how upset or concerned we are.

I am reminded of that much quoted speech by Sir James Munby (‘When is Safeguarding Abuse?”) in which he says that if local authorities are to justify intervention then what follows must be better than what went before. I have no doubt the intention of the Vulnerable Adults Bill is not to wrap all people in cotton wool, but to take what Sir James calls a proper balance in supporting those “less well equipped” to deal with risk than others.  If you want to find out more try the brilliant Lucy Series @thesmallplaces – https://thesmallplaces.wordpress.com/2014/11/14/what-good-is-it-making-someone-safer-if-it-merely-makes-them-miserable/

However the proposals for a Vulnerable Adults Bill concern me because, although I have little doubt that while the courts would continue to respect the right of an individual to make an unwise decision, where such is to be over-ridden that must be by a higher authority than a council employee. Indeed, I don’t see why the inherent jurisdiction of a judge sitting in the High Court does not already meet this need. And as I see it, treating people who are vulnerable because of their disabilities differently from all other people is discriminatory.

In practice then I fear such an Act would be used against people, not to support people, and there would be little consistency in its application by health and social care workers. The culture of paternalism and protection is still deeply embedded in some quarters. For example, I have been challenged many times about the outcome of a capacity assessment I have completed, but not once when I said the person lacked capacity to make the decision, only when I said the person had capacity. That is absurd; the assumption of capacity unless proven otherwise should be well established but it is not, even ten years on.

I doubt those drafting the Bill would want this to happen but in practice many people with dementia (or not!) in hospital making the natural decision to return to their home would be deemed ‘vulnerable’ by ‘concerned others’ and needing protection. The ward staff would want this because they would not want to be held responsible in the event something bad happens to the person. This paternalism exists now in spite of the law preventing it. In my experience some professionals are not afraid so much of something bad happening to the person, they are afraid of something bad happening to them as a consequence of something bad happening to the person!

I tell social workers all the time that if they do what the MCA says then Section 5 of the Act will protect them from liability. But how could a social worker trying to defend the right of a person to make an unwise decision deal with such ward staff or police officers or concerned neighbours telling them that they must do something and citing the new law? Who among us wouldn’t be more worried about their job than the rights of the relevant person? The MCA is already intentionally used against people so what then would be the chances of a person unfortunate enough to be objectively considered ‘vulnerable’ appearing on the radar of health and social care retaining their autonomy?  See the case of Fluffy the Cat if you don’t believe this to be the case – https://ukhumanrightsblog.com/2015/01/29/what-price-liberty-damages-dols-and-a-cat-named-fluffy/

By the way, in time Emma found a real friend and moved out of the care home and into a shared flat and those two women lost their free money. What she had needed was support from her social workers, not for her social workers to decide what was best for her.

Ian Burgess, BIA and MCA Professional Practice Lead, on behalf of the Adult Principal Social Worker Network in England

 

Lymbery, M (1998). Care Management and Professional Autonomy: The Impact of Community Care Legislation on Social Work with Older People. The British Journal of Social Work 28, 836-878.

Munby, Lord Justice (2011). Safeguarding and Dignity: When is Safeguarding Abuse: Keynote address by Lord Justice Munby to the Rotherham, Doncaster and South Humber Mental Health NSH Foundation Trust’s AMPH and Social Care Conference.