For the Valentines I never knew

Valentine

There’s a song by a band called the Wedding Present which like so many other songs is about falling in love.  It’s called A Million Miles.  It’s about that moment when you meet someone for the first time. The moment when your stomach spins. You can’t eat, you can’t sleep and yet despite this, as the song goes, you ‘can’t even remember the colour of her eyes’. The song connects with that first fleeting moment when a returned smile and a burst of shared laughter on the walk home together means everything. When your world is filled with subsequent endless telephone calls to each other (it was written in the mid 80s before text). It’s about that mad bit. The bit where the massive risk has paid off, even if it’s only momentarily.

I know it’s different for everybody but that song has always resonated with me because that’s how it feels when it happens. It’s a kind of prolonged Christmas Eve of anticipation. It’s mystifying, scary and the most exhilarating experience that you can have. Its the 1000-1 off-chance of a new human relationship that may lead to love and will involve lust and desire alongside, hopefully, some happiness on the journey. The risk you’ve taken was huge. The smile that might be unrequited, the humiliation of a misread signal, the shocking discomfort of a blind date from hell, the deeply personal hurt that comes from rejection if, as may be likely, a rejection is just around the corner. Yet despite that, despite all of that, we felt it was risk worth taking.

Love and falling in love. Seeing people fall in and out of love. Beginning and endings to relationships plays a huge part of our lives. I’ve completed two three year courses on issues around humanity and social care and I’ve completed countless additional training courses but I genuinely cannot recall ever being asked to write about love in any assignment that I competed. I have definitely never written the word love in an exam. I can’t remember a single lecture on love or certainly not one that didn’t medicalise it, or quickly move towards framing love in terms of ‘attachment’ or ‘obsession’. But love and relationships appear to be one clear thing that drives us. We don’t get to choose who we love or we can not prevent unrequited love. It is part of who we are, and can at times lead to terrible sadness. It is the essence of humanity. And yet, it is something that health and social care isn’t comfortable with.

As social workers you would think that our profession would be there when people needed help and support with love – it’s sort of in our job title. But in my career, I have found the most significant block in terms of our thinking about supporting people to experience the love, with all the risk it brings.  I can recall on one hand the number of conversations I have had with people where there has been a positive approach to helping someone with any aspect of having that ‘Wedding Present song’ feeling.

It is particularly stark when it comes to people with a learning disability. Instead of love, I hear about sex a lot. And sexually transmitted infections. And grooming. The words sex and relationships in social care are invariably linked to risk and danger and professional worry, rarely love. I worked with a young man some years ago who according to his allocated learning disabilities nurse had had sex with his boyfriend who also had a learning disability after an evening party at the day centre. Within the course of that day over 20 professionals were made aware of what had happened. We knew what had happened in forensic detail and more or less where it happened. The police were mentioned. No crime had taken place but someone thought something needed to be done. What about the risks? What about consent? What about protection? Everyone focused on the sex. No one of course said anything about love. Whilst I find the term ‘making love’ a bit toe-curling, it was safe to say that none of the people who got to hear the intimate details of whatever happened between that loving couple stopped for one moment to consider it to be anything other than a physical act. The couple are still together. They are still upsetting people by having sex. No-one is mentioning that they love each other and may get married. No one is talking about how their lives have been enhanced through love. They often skip their allocated day centre to spend the day together travelling on buses. The fact that as a couple they want to stay in each other’s company all day every day, seemed to worry and upset professionals rather than be celebrated. But surely that’s what love does, it puts everything else outside of that relationship into context. For them, love is the answer, not social care.

Social care, day centres, endless games of ten pin bowling, coffee and cake in Merry England for ten people and two carers – all makes sense when there’s nothing in your life other than people who are paid to care for you. Especially  so if you also do not have the comfort of love from your family. Add love into the mix and suddenly ‘outcomes’ and ‘achievable goals’ and ‘support plans’ find their context – in the bin. Love between two people makes sense of everything.  Leaving the question – why don’t we embrace the possibility of love for the people we support rather than reframing relationships in terms of worry, risk and danger; The pain from love is a risk that we are willing to take ourselves, and not infrequently do so. Yet by worrying about others feeling pain from those very risks we embrace for ourselves, we inadvertently ensure love remains always just outside of reach and relevance of those we support.

Perhaps, as professionals we find this so difficult as it calls into question our professionally taken for granted assumption that our interventions are wanted and helpful. If we properly understood love and humanity we would have to understand our place in a person’s life is somewhere much father down in the pecking order. Our rules, our say so, our plans for you suddenly lose gravitas when competing with forces like love. What always strikes me about Mark & Steven Neary’s powerful account about ‘Getting Steven Home’ is that via the Court of Protection the Local Authority seem to very late in the day to be forced into having to grudgingly accept the fact that there is a relationship between Mark and Steven which must be respected and upheld in law (Article 8) but never really seem to get close to understanding that it is the love between them that drives everything about their words, actions and motives. It’s as if love is quite literally an emotion beyond us. We’ve typed ‘love’ into our health and social care computers and it’s come back with an error message and then crashes.

So we tend to stick with what we know and what keeps us safe as professionals. We’ve sort of come up with a fudged thing in assessments which is about relationships. This means that we don’t really have to talk about love but we can talk about other people – significant others, next of kin, nearest relatives and relevant persons. And we’ve got a form and a process for every relationship. Some relationships (nearest relative and relevant person) even come with special powers. Whether nearest or relevant relationship is loving never really crosses our minds. Love becomes relationships. Relationships become processes. Processes get processed. Health and social care box ticked. Love don’t live here anymore. Not that it ever did.

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Love is all you need

love is all you need

Sheila had a secret. She had a lover. She had kept this secret for over 20 years following the death of her husband so that she wouldn’t upset her daughters. They knew, of course, about her gentleman friend, but they had strongly disapproved. And when they had arranged for her to move into a care home whilst she had been in hospital last winter, they had given strict instructions to the home that Sheila must not be allowed any visitors that they didn’t know about.

Imagine, a life without love. A life where you needs are seen as functional. You are warm, fed, and hydrated. Your scheduled activity slot is arranged for 2 hours each day keeping you active. But you are bereft of anyone in your life who isn’t paid to be a part of your life. Would this be a life worth living? Would the service being provided ever be enough to meet your needs?

Sheila was lonely. In a home with 35 other people. And a 24/7 staff team. Notes in Sheila’s person centred plan stated that she liked to spend time alone in her room. Sheila was liked by the staff team. She was a gentle soul, quiet, easy to support.

Person centred planning has its origins in the idea that one human being would make a voluntary commitment towards another. Human to human contact. A partnership of equals that starts with the surrendering of professional power and interest. Genuinely listening with humility to the lived experience of the person who is trusting you enough to invite you into their life.

Sheila’s social worker was worried about Sheila. When she met Sheila, she saw that Sheila was well fed and in good physical condition. But she also saw sadness. She wanted to know more. She wanted to learn about Sheila’s life story, about her friendships and best memories, her skills and gifts, about what made Sheila happy. Sheila chose to share her secret for the first time in over 20 years.

The care home were regarded by the local authority as one of the better ones. They were really upset that they hadn’t known about Sheila’s gentleman friend. They helped set up a phone call, and then a visit. He now visits Sheila regularly. Sheila is noticeably happier. She no longer sits alone in her room.

I don’t want to a social worker in my life who can’t talk about love without being embarrassed. Love is unconditional. It is the gift that makes life worth living. I want a social worker who gets that and wants to build lives worth living from there.

Till One by One They were Gone

purple balloonA few months ago, I was talking to a social worker. She was telling me about a man called Peter that she had worked with.  She told me that Peters relationship with balloons (as in the ones you see at a birthday party etc) is a critical feature of his life. She went on to explain how in agreeing the support plan with Peter they made the balloon central to everything. She then told me about when she had to articulate this support plan in Court and how she really got into her stride talking about the importance of the balloons and how without this Peter would very much struggle to function.  She explained to the court that without this relationship with balloons the restrictions on this person’s liberty would be so severe that they would, in her opinion, leave the person bereft, at risk of behaving in a manner which would challenge the service and prone to increased social control in response which would likely including two to one staffing being imposed on him.

The social worker explained how she had ensured that others in the multi disciplinary team recognised the importance of balloons to Peter, as strange as the concept was to them and how some had struggled with the idea of balloons and how some had tried to divert Peter from balloons for many years.  Peter had a good life and was happy but clearly he was happier because balloons where in his life. Yes, his life may be enhanced by a partner, children, increased social opportunities, and all that was for the social worker to continue working with Peter on. But for now, Peter, who was subject to a Deprivation of Liberty, was significantly emotionally attached to balloons.

The Judge listened to the evidence provided by the social worker and nodded throughout her testimony. At the end the judge said to the social worker, ‘If Peter’s world is, as you say, so wrapped up in the world of balloons, why then is there no mention of balloons by the Section 12 approved doctor and the Expert Witness, who is a psychiatrist?’. The social worker said ‘because they are both experts of Peter’s health condition. However my observation is that they have never taken the opportunity to get to know Peter as a person. If you know Peter, you know his world revolves around balloons’. The judge smile and said ‘quite’.

In my experience I have found it common for Social Workers to significantly struggle to articulate what they do. In the example of Peter and the balloons how do you wrap that up in a competency or a task or a function of a role? Understanding the relationship between an adult man and inanimate colourful, party accessories isn’t something that can necessarily be defined. In terms of our work across health and social care understanding the issue of Peter and the balloons and using that to help secure his happiness and minimise state intervention in his life does not neatly sit near a healthcare procedure, an assessment form or a three conversation model. The skill of social work comes from the critical understanding of the social worker, who is then able to explore the relationship to such an advanced level where they can passionately advocate for the protection and upkeep of that unique relationship in court is exactly the whirly and almost too abstract, just out of your minds eye, not quite able to put a finger on it, beauty of social work when we get it right.

Happy New Year to Everyone from all at Last Quango In Halifax and thank you for all your support, contributions, reads, comments and tweets over the year.

I want to break free

H is for HappinessOn the 13th March 2017, the law commission published their long overdue report on Mental Capacity and the Deprivation of Liberty Safeguards (DoLS).  The report finally arrived a week after news broke of the death of Rusi Stanev, aged 61.  The ruling on Stanev v Bulgaria by the European Court of Human Rights in 2012 was a catalyst for change in UK social care law.  Just two years later Lady Hale referenced his case when she set the acid test to determine what would constitute someone being deprived of their liberty in landmark Supreme Court Ruling on the Deprivation of Liberty Safeguards, which has come to be known as Cheshire West.

The Cheshire West ruling was a wake up a call to adult social work, reminding the profession of its roots as an academic discipline that promotes social change and development, social cohesion, and the empowerment and liberation of people based on principles of social justice and human rights.  The ruling reminded social workers that the most important letter in the DoLS is the letter S – it standards for Safeguards.  The first of these safeguards is the role of Best Interest Assessor, a professional qualification which social workers have embraced in huge numbers post Cheshire West.

A common confusion is that the Deprivation of Liberty Safeguards scheme is not there to deprive a person of their liberty.  The DoLS scheme provides a set of legal safeguards on behalf of the person to protect them by ensuring their right to speedy judicial review against the agency who is depriving them of their liberty.  The role of social work and social care commissioning is not to wrap the person in cotton wool in the name of adult protection, but is to enable people to experience life in the same way as anyone else would. This is a hugely important turning point in the role of social work and social care commissioning.

Take Paul (names have been changed). Paul has a learning disability.  He was 17 when people first became really worried about him being a risk to himself and others.  Professionals decided that it would be in his best interest for him to be moved 100 miles away from his family for his own protection. Anyone can talk up risk, professionalise the risk and then transfer it onto a support plan. There are plenty of social care providers who are willing for a price to offer to mitigate the professionally imagined risk.  In Paul’s case the risk related to him having been seen once, 10 years ago, in a kitchen holding a bread knife.  No one ever asked if he had picked the knife up because he wanted a slice of bread.  10 years later, despite no further incidents having been observed, he was living a life with hardly any independence and very little contact with his family.  As Paul says, if he’d been in trouble with the police and ended up in prison, he would have been released home years ago.  It took a talented social worker, using the Mental Capacity Act to challenge the assumptions being made about Paul and start the long, slow process of working with Paul and the provider to lessen the restrictions on his life and reconnect him to his friends and family.  Possibly, over time and with support, he may finally live an ordinary life, free from services.

And then there was Mary.  Mary’s Saturday treat has been a cream scone every week for as long as her daughter could remember.  At 86 Mary had advanced Alzheimer’s disease which had led to her moving to live in a care home.  The care home staff were very worried about Mary’s love of cream cakes.  They called in the community matron who agreed with them and called in the dietician.  The dietician agreed that these were bad for Mary and wrote a long and detailed explanation of the risks associated with cream cakes which made clear Mary must not be allowed ever again to have one.  Mary’s daughter asked for help from her social worker who took the very sensible decision that in keeping with Mary’s previously known wishes and feelings the home should uphold her right to continue to make the decision which health professionals deemed unwise to eat a cream cake every Saturday for as long as Mary wanted to do so.

The Law Commission have recommended that the Best Interest Assessor role should be made even stronger through introduction of Approved Mental Capacity Professionals to be the safeguard of people’s rights and wellbeing. What greater opportunity can there be for all those social workers who came into the profession saying at their interview to get on the course that they wanted to make a difference?  The challenge is there to social work professionals to raise the quality of capacity assessments.  The bar in law is rightly low.  It’s our job to make sure it stays there and maintain people’s control over how their care needs are met.  After all, the only person who really knows what goes on in a care home or hospital at 3am when the lights are off is the person who experiences the hands on personal, intimate care or otherwise that care worker provide. As Professor Harry Ferguson has found in Children’s services – it is too easy for the person to become “invisible”, their voice unheard, their rights ignored as the social worker becomes overwhelmed by the complexity of the circumstances surrounding them.

Social workers are uniquely privileged, carrying a title protected in law, to access the person, their history and insist that other professions listen when they speak.  This is especially true when it comes to the person objecting – not kicking off, we all recognise that – but quietly resisting the attempts to persuade them that they can never go home but now must accept the decisions that professionals are making about them. Recognising, understanding and acting on objection is the sign of an outstanding social worker.  Objection still isn’t understood well enough.  A person could be objecting quietly but not be regarded as doing so because unless a relationship is built with the person, you might never learn that they feel resigned to their fate, afraid to raise their deep desire to go home, not wanting to upset their family.  Slow social work practice, based on relational practice is the answer here.  The more we recognise objection, search out and encourage people to be open and honest with us about their feelings, the more we can engage in mediation, advocating on their behalf to secure better outcomes. The success or otherwise of the Law Commission recommendations will ultimately turn on this.  Every morning Stephen Neary greeted the manager of his care home with the song – I want to break free – spotting objection and acting on it, is at the heart of safeguarding liberty.

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

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>