Day 67: The clients are revolting #107days

Day 67 was adopted by Amanda, pictured here with her daughter, Jazz.

Jazz&Amanda

Amanda is founder of The Open Nest and in this post she shares her own thoughts, feelings and experiences as a professional, as a mother, and as a supporter of #JusticeforLB.

When I was a social work student I specialised in working with groups of people who needed to access social care but were often voiceless or suppressed within the system. As with all those who seek state support these people were referred to as ‘clients’ of the services. This is actually where it began to irk me. Clients as a word suggests business. Not as is in ‘clients have a strong voice and will not be messed with’, but rather clients are one cog in the big wheel of the business and the huge industry of care that we seem to have developed in this country. By a twisted world upside down effect it seems those in need can now be quite comfortably viewed as a bit of a problem, a glitch or even a drain on the ‘care’ industry.

As part of my practice based learning. I devised a ‘Clients Committee’ model. The purpose was to facilitate an independent user led group made up of adults with learning disabilities (another label that now irks me seeing as I’ve met many social care managers who seem to find it harder to learn than their clients). Anyway, the dude ‘clients’ attended an adult training centre and once a week I would take their meeting minutes for them based upon their conversations around changes in the support services they felt were needed. A lot of the talk centred around rights to have relationships, to choose their own individual style and to have more funding for the meeting to get better sandwiches. Nothing changed. It was an ‘interesting’ experiment, a token gesture. It was still a shit sandwich.

After proceeding to work with ‘clients’ of women’s refuges, traveller sites, drug and alcohol projects and HIV services, I had seen enough. In almost every area of social care I saw the ‘clients’ often remain static in their position of powerlessness and unmet need whilst workers gained power, very often by being the agents of budget control and the keepers of the status quo.

Some things I have experienced in working practice, although seemingly small, stand out. I was once given the job of making sure ‘clients’ with HIV or AIDs who came into a drop in centre could access healthy and nutritious food. The budget to feed up to 12 clients per day was £12. I became a master at fresh vegetable and fruit shopping. One day the big bosses from the NHS were coming for a meeting. As well as my usual £12 for the ‘clients’ the manager of the project gave £50 that day for a meeting ‘buffet’. I felt furious. When I questioned this I was met with a wry smile (a manager’s special) and a response that patronised me as being a quaint but outdated revolutionary.

Incidents of this nature were not rare and led me to feel personally unable to work inside such systems. Subsequent academic study led me to analyse, once again, how certain groups of people are marginalised, although this time it was culturally through the mediums of the popular press and television.

Everything I experienced led me to a life changing decision to become an adoptive parent to a very young dude (whose mum was also a dude) and who needed some full on support and advocacy.

In that process my daughter and I both, like her birth mum, became ‘clients’ of the social services as well as the health authority. In the eyes of the care system I became just ‘mum’. Declawed and unprofessional. My daughter became a person talked about in her presence as if she were invisible and whose name they could never spell right in her correspondence no matter how many times she told them.

When Mencap were eventually wheeled in to support my daughter they covered the backs of the poor practitioners whose incompetence eventually caused her serious harm. Even a National charity for dudes is not beyond bending or editing the truth, of selling their ‘clients’ out if commissioning is at stake. And they are not the only ones.

There had been a gap of many years between my training to work with social care ‘clients’ and my becoming one myself. I thought things would have moved on and ‘lessons would have been learnt’. More fool me. Despite the annual reporting of abuses in social care settings and harm coming to clients of the health and social services being featured on news items and documentaries, poor practice, tokenism and budget led interventions seem still to prevail.

Some practice failures may be small but when on the receiving end they can be the proverbial straw. My personal ‘shit practice gong’ of this month goes to a health visitor who rang one of my family members at home to congratulate her on the birth of a lovely baby daughter and to arrange a hello visit. Would have been a thoughtful gesture if her baby hadn’t been still born the previous week.

But now to Connor. I didn’t know him or his family but I have felt personally touched by his appalling and avoidable death and the strength and bravery of his family and friends in the darkest of times.

Initially the shock was in hearing he had died. This shock became compounded by the response from Southern Health to his death and to his mothers grief. It is truly incomprehensible to me.

I cannot pretend to feel the grief or have any true understanding of what Connors family are going through. But I know I genuinely feel empathy, a sense of there but for the grace of god go all of us and a really huge feeling of anger.

My daughter was on the verge of being admitted to an assessment centre not very long ago and the conversations with me around this potential intervention chilled me to the bone. She would not be able to have contact with me initially nor could she take in her security pillow, her phone or any familiar objects from home. The inference from the start was that ‘we need to see how she is away from you because it’s probably some family or home issue that is the real problem”. I read with horror Mark Neary’s recent blog about his sons anxiety at being severed from his place of safety in the name of a professional assessment. But our children didn’t die.

I know there are great and emotionally intelligent expert professionals in both social work and health care and I know professional bashing is a hard stance to take in times of low resources and outsider aims at ‘criticise to privatise’, but how could Southern Health be so cruel.

You can’t buy or train in truth, empathy and remorse anymore than you can illicit forgiveness and understanding via a cold bureaucratic and funded PR fob off.

The response to this case from Southern Health bosses shows the emotional maturity of a small child who is denying they ate the chocolate when it’s clearly all around their mouth. I find it embarrassing.

The people who support Connor and his family are collectively angry. We don’t feel like being particularly polite or forgiving of the unavoidable death of a healthy young person through negligence and poor practice. This isn’t something that happens to all of us but the lead up to it, the ignorance and pseudo care that allowed it to happen is recognised by many of us in our experience of being a ‘client’ or the relative of a ‘client’.

Southern Health can accuse Sara of being difficult to handle, suggest she might perhaps move on now, infer that Connor was just another ‘client’ who sadly had an unfortunate accident, that those seeking justice for him and other dudes are akin to internet trolls, but it won’t wash. Its bigger than them. We are far too revolted and Sara’s strength as a campaigner in love and honour of her son means she is now leading what could easily become a significant and broader revolution in how society views, talks about and supports all dudes in this country.

I for one am living in hope of significant cultural change being instigated by this campaign. No matter what Southern Health do to discredit the integrity of Connor and Sara’s experience, no matter how much they cover their eyes, ears and especially their backs, it wont change that.

You still have time to get involved with the #107days campaign if you wish to join Amanda, and so many others, revolting for a better society. Next weekend, Sat 31 May, is the party night to end all party nights, and it would be great to see some of our online supporters in the flesh!

Day 37: When care goes missing #107days

Today’s post was written by Sally Donovan who adopted Day 37 to share a blog post on absent care and compassion.

Last summer I shared a table on a train with a man I’d never met before. It was a quiet carriage and he wanted to engage in conversation. I’m ashamed to admit that at first I was a bit reticent. I was travelling with my two children and between us we are used to attracting a bit of attention. I didn’t want to risk attracting any more.

He was a confident man, an academic who was interested in people. He immediately engaged with my children and was unphased by them. He was someone I’d have liked to have had a proper, loud conversation with, but we were in the quiet carriage and people were tutting.

I can’t remember how we got on to the subject, but he shared with me his experiences of visiting his mother in Stafford Hospital. As he described it, her care had been both severely lacking and delivered with conscious cruelty. He had been left unable to explain the lack of humanity in those supposedly caring for her and other patients and in those whose job it was to safeguard patient safety and communicate with the relatives of those who had suffered. What he described was not only an absence of care, it was planned cruelty and those who dared to argue otherwise were represented as being misinformed, unhinged and working against the common good.

Misrepresenting and discrediting those who act as advocates for vulnerable people is a theme that plays out with depressing frequency in the health and social care systems in this country. We the parents, the carers are misinformed, we are wrong, we are hysterical, we have got things out of perspective, we are awkward, we are standing in the way of normal service, we are disloyal, we kind of deserve the life we have.

Sara, the mother of LB (Laughing Boy) has found herself in this situation. I started following her blog just as LB entered the assessment unit where he would die either from ‘natural causes’ or from lack of care, depending on (in my non-expert opinion) who pays your wages. I was attracted to Sara’s blog because she writes with clarity, humour and compassion and because her photographs are lovely. Families of vulnerable children and young people get used to things being a bit crap, a bit worn out, a bit out-of-date and so it was refreshing to see something presented with style and grit. Little did I know that what I was following was a human tragedy about to unfold.

One of the ironies of health and social care is that when a tragedy takes place, a son dies, a mother is left unfed, the horror is then often made so much worse. Firstly, it seems that those with a professional role to play find it difficult to appear to care. They may care, but what matters is acting like you care, demonstrating it. Where ‘care’ is demonstrated it is around spurious things like reputation, PR and ‘patient confidence’ and I guess probably careers and budgets and funding. Underneath the guff, no matter how much of it there is, is the waste of a life and a family left in grief and loss. When the family try to get answers, the ‘bureaucracy’ effectively then tortures them by locking up communication and acting defensively in bizarre and cruel ways. It has systems which don’t lead anywhere, tests which cannot be passed, the simple and obvious is made complex and cumbersome until everyone apart from those grieving have all but forgotten what the original tragedy was. It leaves one wondering when personal morality became so negotiable.

Strong men and women, who lead a whole other life outside being parents and carers, who are perhaps professionals, experts in their field, well-practised, well-respected in what they do are stripped of all that as though it is of no import at all. Take off your robes of experience, your education, your talents, your knowledge and leave them in the bin at reception. From hereon in you are a nobody, you know nothing, you stand for nothing.

I was brought up to do the right thing, to tell the truth, to respect authority and to generally think the best of other people. I thought that ‘society’ generally acted in the best interest of its citizens and if you found yourself outside its protective walls then it was probably your fault.

Some years ago I went to the NHS for help. Our adopted child was displaying some extreme behaviours and to me (a non-expert) and to our Social Worker, was clearly traumatised and in need of some kind of therapeutic intervention. I sat in a crappy reception area, not yet realising that I had left the best of me in the bin at the door. We were seen by a consultant who either discredited or ignored almost everything I said and who steam-rollered over issues I had expressly asked him to take care over. In my opinion (as a non-expert), he was an egotistical, stupid, know-it-all, know-nothing rude little shit of a man and his conclusions were sloppy and entirely wrong. I walked out of that crap hole crushed but nevertheless resolving to never ever seek the help of the NHS on matters of child trauma and adoption ever again. I should have complained, but those who have a caring or an extra parenting role will perhaps understand why I didn’t have the energy to do so. An earlier visit to our GP had resulted in the word ‘depression’ being used. Not only was I ill informed, I was mad too. I had fallen through the protective walls of society. It had been incredibly easy.

Since I’ve come out of the fog of exhaustion and secondary trauma that can come with caring for children who are deeply traumatised by their pasts I have connected on social media and in real life with many parents and carers of children and young people with additional needs, including Sara and have discovered that many of us find ourselves living outside the city walls.

How does this happen? How do job-holding, tax paying, law-abiding citizens, advocating on behalf of their vulnerable loved ones find themselves cast out and their loved ones on the receiving end of poor quality care?

Here’s my (non-expert) take on it.

  • Experts and I guess I mean health and medical experts in the broadest sense here are designed to give information and not to receive it. Some of them are egotists. Egotists are not that great at valuing the talents and knowledge of others. It’s a classic power game – I have the power over you, you are the recipient of my wisdom.
  • The NHS is apparently sacrosanct and staffed not by fallible humans but by angels. Criticise its angels at your peril. They can do no wrong. Wrong is in the eye of the beholder. This lack of critical thinking around any service is dangerous.
  • Without strong and challenging leadership, tribes flourish in enclaves in health and social care, just like they do in other organisations. Tribes look after their own and don’t like to be encroached upon by ‘outsiders’ (the vulnerable people they are meant to be caring for and their parents). ‘You are not one of us. This is not how we do things around here. You are not welcome.’ Some of the members of the tribes are poorly paid and poorly educated, but I’m not convinced that’s an excuse for cruelty. Tribes operate under their own rules and codes of morality where it kind of becomes acceptable not to care and not to do things properly. If you’ve ever worked in a big organization, with lots of departments, you’ll know what I mean. Sometimes groups ‘go tribal’ because the organisation they are part of doesn’t value them. Sometimes it’s because its members enjoy being awkward and lazy and moaning about everyone else and they all egg each other on. They need to be encouraged to find alternative employment. When a tribe is in charge of booking out conference rooms it is annoying. When it is given responsibility for caring for a vulnerable person it is dangerous.
  • There is no ultimate case to answer. When a young person, or an older person dies unnecessarily in the care of the state no one is in fear of being sat in a dock and they should be. When the state fails to point the finger it is tacitly saying it doesn’t take cruelty or lack of care that seriously. Threat of legal action focuses the mind when morality and care have gone missing. Those who disagree with me claim that the threat of legal action would only encourage cover ups and discourage whistleblowers, like the current state of affairs doesn’t.
  • When vulnerable people are excluded from society to such an extent that ‘normal’ people never have to come into contact with them, they become something ‘other’; annoying to care for, or dangerous. It becomes acceptable to treat someone who is seen as somewhat less than human with a lack of humanity.

I asked the man on the train what if any conclusions he had come to about what causes some people to act in such a careless and cruel way towards those in their care. He shook his head. Everything he had thought he’d understood about people and compassion and care and morality had been over-turned.

You can read Sally’s blog here.

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