Day 101: An animated, poetic call to act #107days

Day 101 is another shared day, this time between David and Trish.

This is what David had to say about why he chose to support #107days and #JusticeforLB:

When I first enquired about sponsoring one of the 107 days I wasn’t quite sure what I was going to do, I just felt compelled to do something. Having agreed to prepare a prezi with Sara for her slot at the 3 Lives Event earlier in the year and then meeting her and listening to her speak, for me this was a no brainer. Why? Well, because aside from the sheer frustration I felt at hearing Connor’s story,  seeing Sara hold it together whilst presenting in order to get everyone to sit up and recognise that this actually happened. I was also very embarrassed. Embarrassed by the fact this could happen, embarrassed that this has happened so many times before, and embarrassed that I am part of system that has let Connor and so many others down so badly.

When I think about my own career and what has driven me to want to do more, make change and challenge this very system; I cite three core experiences all of which resulted in the self same feelings of embarrassment, annoyance and at times times anger. I offer these here, for the reader to contemplate, digest and act; yes to act. Just in the same way you have taken action to arrive here at this very site, to read these very words and to want to make change and denounce any form of abuse, neglect or infringement of rights.

So, number one. In 1987 whilst working in a residential care setting I accompanied four people with learning disabilities to visit a local pub. Sadly, no sooner had we purchased our drinks, the manager beckoned me over and said ‘no disrespect mate, but I don’t want them in my pub’. I had to go back to the people I was with and ask them to ‘drink up’. We were made to leave and all eyes across the pub tracked our departure as we were ushered out. The next day I complained to the brewery and went to the local press. The community revolted and the landlords reputation was besmirched. Justice.

In 1991 whilst undertaking my nurse training, I observed two members of staff assault one of the residents of the home where I was on placement. I wont go into the details, but lets just say this happened out of the blue. On their part, I never really got to know if this was some random act of boredom, a show of their status or prowess, a reminder to the people who lived there to ‘know their place’ or simply ‘a game’ like the ones staff described  during the panorama footage. When I spontaneously reacted during this event, I was taken by the two staff members (interestingly both of them were ex military personnel) and dragged outside in the snow and into a closed courtyard. I was given a clear message that I ‘better not mention this anything to anyone, or else’. The next day I made a formal complaint and reported what I saw. An investigation ensued and the two thugs were later dismissed. Justice.

In 2001 I supported a gentleman with learning disabilities to attend a hospital appointment in relation to the chronic ulcers on his feet and legs. During the course of the appointment the Consultant, without asking, led seven medical students into the cubicle and proceeded to talk to his protégé’s about this gentleman’s ulcers and his ‘mental subnormality’, bestowing on them, what he evidently thought was of scientific value. The gentleman, as the patient, dealt with this by pulling the jumper he was wearing over his head. The Consultant quite oblivious to this continued his oration, going on to make the announcement that the ‘best thing for this patient is to amputate his left leg’. I was incensed, outraged and again, embarrassed. The next day I wrote a letter of complaint to the Chief Executive of the Acute Trust, but instead of merely relaying my annoyance, I proposed a solution. This was gratefully accepted by the Chief Executive and as a result, my colleagues and I developed a package of awareness training for both existing hospital staff as well as medical students.

David feels strongly that sometimes we all need to act. In fact I’d go as far as to say (personal view) that by not acting, we are all endorsing this dire level of status quo, therefore we should not just feel embarrassed, but also culpable. David chose to act in Connor’s name too. He has crafted a very personal interpretation of what happened to LB. It has taken many hours of time, and much love and persistence (whatever you’re imagining double it, including one version becoming corrupted hours from finishing requiring him to start again). David could have very reasonably quit at that point but he persisted and produced this for you all to enjoy, and act on:

Sometimes assertive action is required, it’s a response to these kind of episodes, its not often the way you would have wanted things to go, but instinctively you feel you just have to do something, make change, denounce abuse or uphold peoples rights. The animation is my interpretation of Connor’s journey through the Assessment and Treatment unit. #JusticeforLB? I hope so.

David’s animation is accompanied today by another creative endeavour to act as a prompt for thought, reflection and action. Trish had this to say about why she is supporting #JusticeforLB and #107days:

I am shocked and horrified by LB’s death and by the 1200 premature deaths per year of learning disabled people in our care, that’s our care, public provision. And by the determination not to look too closely into those deaths (no review board to help find and fight underlying causes). Including the death before us – missing brain tissue? Optional pathology guidelines?

We need to speak, don’t we?

Trish has penned this poem in memory of LB:

Learning Disability 2013: in memory of LB

A child, my father, playing in the fields,

needed the bathroom in his old friend’s house,

took a wrong turn – opened another door –

came face to face with a much older child

he’d never seen before.

He is long gone, I don’t know what they said.

 

Bewilderment and awe played on his face.

How many families hid a child? he asked,

not spoken of, perhaps the doctor knew,

perhaps the priest. Why silence, was it shame?

more likely fear – there wasn’t any help.

Except the institution.

 

DON’T

say it couldn’t happen here!

Don’t say we offer treatment, pay for care,

When all too often there is no-one there,

urgent requirements must wait weeks or months,

and information’s scattered on the wind!

Stop the bus!

You have the wrong driver –

roaring us back to the horrors of the past!

 

Skilled carers with the families could ensure

the bus is going in the right direction.

To a place of joy, space and old buses,

to the farm for days of work and giving,

home to parents, brothers, sisters, rest.

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 35: ATUs, autism and anxiety #107days

Louise adopted Day 35, to share some of her thoughts on assessment and treatment units and their suitability (or not) for people with autism. She wrote a blog post to share her experiences and thoughts that is shared in full below:

I am a Nurse who works with individuals with Learning Disabilities. I was heartbroken to read about the avoidable death of Connor. I have worked in assessment and treatment since qualifying in 2009. Prior to this I grew up with a younger sibling who is on the autism spectrum and has complex needs and epilepsy.

I am currently taking some time away from this working environment after experiencing high levels of anxiety and a constant feeling that no matter how hard I try I feel frustrated that I am unable to provide care to those I trained so hard to support.

In this post I don’t wish to dwell too long on my own feelings about assessment and treatment units.  Despite my frustrations I have been so privileged to support lots of amazing people who have allowed me to support them when they are at their lowest. I was able to go home after my shift (very rarely on time) but I was never able to switch off from the frustration I felt.

I don’t believe the system that exists works in favour of those with autism. I believe that many people with autism who are admitted to assessment and treatment units live in a heightened state of anxiety during their inpatient stay. There are various reasons for this and in this post I would like to highlight a just few.

Environment

No matter how the service tries to be welcoming it is still a clinical environment, nothing like home, school or day services. Echoing corridors, lack of natural light, strange noises of people that are unknown to the service user, funny smells of hospital dinners, funny smells of other people, the clattering of the dinner trolley, the rattle of keys. Changing staff every day. Running about from one thing to the next. Screaming, shouting, and swearing. Sometimes it’s too hot and sometimes it’s too cold.

Communication

Ever been on holiday to another country and wished you could understand what was being said? In the inpatient environment non-verbal cues may be different for a person with autism. Staff may use a different regional dialect; the pictures used to communicate may not look like those you are used to.

Use of Seclusion rooms and PET

How terrifying would it be for ‘stimming’ behaviours to be misread as aggression, to be offered medication when it’s not time to take it? To want to stand close to the nurses and carers and smell them and feel them to make sense of whom they are to feel safe? For them to misunderstand this and the next thing you know loud bells are ringing and lots of people are running towards you holding you when you don’t like to be touched?

The seclusion room could be terrifying to a person with learning disabilities yet they are still used within mental health services to maintain a safe environment. Equally the seclusion room could be a welcome escape from the pressures of the ward environment.

Unpredictability/predictability

The atmosphere on the inpatient ward can change at any time. It can become very noisy very quickly. This can be frightening when you don’t know why.

Despite the quick changes in atmosphere the unit has an underlying ‘routine’. If you have autism and you stay on the assessment and treatment unit for a long time could there be a possibility that this ‘routine’ becomes your routine?

Could the change from the inpatient environment to community upon discharge provoke high levels of anxiety? Just as it did upon admission?

If the reason for admission and the prescription of PRN medications is for challenging behaviours linked to stress and anxiety how likely is it that an improvement in this behaviour will be observed within such a pressured environment?

Staff

The pressure placed upon staff in the inpatient environment is high. I have seen high levels of sickness, high turn-over of staff, agency staff coming and going, Low staff numbers and a mountain of paperwork. I have worked shifts when I have been unable to access the bathroom for long periods, get a drink or something to eat until the shift is over (12 hours).

I have worked with lots of very experience staff and have often wondered why do people not understand autism? Information is shared and training has begun to be rolled out to staff, yet behaviours are still misunderstood and seen as (at best) controlling and (at worst) rude and awkward by staff.

Failure to work with existing support networks

I know that when I was in hospital being around those who were familiar to me was a great comfort.

The way the inpatient environment is designed it is difficult (but not impossible) to utilise the existing support from families, support staff, schools and friends.

Due to the complexities of safeguarding/confidentiality staff nurses who are often not experienced in working with families during such a sensitive time often make decisions from their understanding of policy and procedure instead of seeking flexibility in the best interest of the patient.

Call for action

I strongly believe that change needs to happen, for service users and staff alike. With the privatisation of the services used by individuals with complex needs I fear that needs are now at risk of being overlooked. Care packages could be seen as a commodity and levels of support could be at risk of being reduced for all the wrong reasons.

I believe that it is essential that the government provide adequate funding to address the health needs of individuals with autism.

Staffing levels need to be increased and better support needs to be put into place for staff.

Autism awareness and how it relates to nursing practice should be mandatory to all staff.

Work should be done to ensure that established routines and family contact are maintained during any inpatient stay.

Families should be involved in care planning and information sharing.

Lead family liaison Nurses should work with the families to keep communication open and constructive.

Thank-you for reading, Louise

Screenshot 2014-04-23 05.56.04

Day 10: Hand in Hands with AL #107days

One of the aims of #107days was to raise awareness about #JusticeforLB and all young dudes and dudettes, about the reality that they face and some of the alternatives that should ideally be available. To some extent what happened to LB was due to the lack of appropriate provision available to him and his family as he approached adulthood. A number of people have got in touch to adopt a day for #107days to share some of the work they are doing to improve things. Day 10 was adopted by Michelle Dudderidge, this is what she had to say about why she got involved:

You can see from the images of LB he was a good-looking, happy young dude. He was tragically failed by the people who should have fully supported him and kept him safe from harm. #JusticeforLB is important to me as LB’s death needs to be acknowledged and those responsible need to be punished to ensure this doesn’t happen to anyone else!

This is Michelle’s story:

In 2011, following Winterbourne View, I established a supported living service, in Hertfordshire, Hand in Hands, to support vulnerable adults with Learning Disabilities and behaviours that challenge, to live independently in their own homes.

I always wanted the organisation to stay small, to enable us to make a difference to the lives of a few individuals and not compromise the quality of the support offered and ensure I remained in control. We now have three services in North Hertfordshire, each can be home to four individuals. As we have only recently opened the second and third services we currently have six vacancies to fill across both.

My aim was, and still is, to ensure those accessing our services have the quality of life that we ourselves would wish for, in a society free from discrimination.

…and this is AL’s story, Hand in Hands first individual:

AL Before

Our journey with AL began in November 2011, 4 days after his 18th birthday. He was living at home with parents who had seen a change in behaviours since he had left Residential School and were finding him increasingly difficult to manage.

In December 2011 AL was admitted, informally, to an Assessment and Treatment unit in Buckinghamshire. AL was in the ATU for 97 days, during which time we undertook a transition period to prepare him to be moved into supported living in March 2012.

Although AL’s Psychiatric Consultant was, and still is, very supportive of what we wanted to achieve for AL, the care staff (many of whom were agency workers), were not as optimistic. The staff told us as AL is non-verbal, “he will never be able to communicate effectively”. AL now uses picture cards and basic Makaton to ensure his needs and wishes are known.

The staff told us AL would not be able to live safely in the community, as he “required far too much PRN medication to manage his unpredictable behaviours“. AL has not had any PRN medication since July 2012. He continues to be managed on a 2:1 staffing ratio, as has been the case since day one, and he is also fully supported through a robust Behaviour Management Plan.

The staff told us he must live alone as he was “far too dangerous to live with others“. AL is now living quite happily with 3 others, and this has been the case since August 2012. They all understand each other’s personal space and are respectful of AL who ‘moved in first’.

The staff told us he would never “be able to go into the community unless he was in a car“. AL will go for walks with staff (on his terms). He is always more than happy to take staff by the hand and lead them to the ice-cream van where he will wait his turn before touching the picture of what he would like.

All of these things are huge achievements for AL in the development of his social and daily living skills and there is no way he would have progressed if he was still in the ATU. AL will always be unpredictable due to his diagnosis, however, I must say how proud I am of the staff team at Hand in Hands who continue to support him to further develop everyday.

AL After

The two photos in this post are before and after pictures of AL.

Look at the difference in his eyes, the unkempt, lost and scared man has gone and he is now a happy young dude who is being supported fully to make the most of his life as an equal in society.