Usual Suspects

Yesterday I saw a tweet about co-production, wondering if it was possible to get away from the same old suspects round the table. I think it is remarkable that anyone sits around a table now talking about anything to do with social care. Why bother?

For 24 years I was one of the ‘usual suspects’. The parents who alongside trying to raise a family and juggle a child with a life limiting condition, turned up for yet one more co-production meeting designed to improve a system that was originally designed to help.

I am no longer a usual suspect I have retired. I have passed that particular baton over to younger families, families who have not yet had the life sucked out of them, and families who feel that they can fight for a brighter future for our children with special needs.

To me co-production dances around the sidelines, it engages with the small things, it ticks a box and then the councils get on with doing what they would have done anyway.When we raise big issues like immigration, housing, adaptations, finance they ask us to focus on the job in hand, the immediate problem, the service redesign, the budget cut, the transport policy, the SEND reform, the college redesign, the survey, the form to fill in. In 24 years I have seen it all. After all families in this game are the ones with the institutional memory.

From where I sit after a very long Summer trying to recruit support staff to look after my lovely daughter all I can see is the ‘usual suspects’ portents coming true. The building bricks of good social care are missing, affordable housing is not available, a strong, well trained and caring workforce is not available and fundamentally there has been little shift in inclusion in the workplace or inclusion in society.

I have always felt that those on the frontline, us, families and people with disabilities are the voices that should be listened to first. We act as a filtration system shining an early warning light on the problems ahead.

I wish that our voices were welcomed. I wish that we were taken seriously. I wish that those other usual suspects lucky enough to be paid to be around the co-production table listened. I wish that the system was not broken and I wish the next generation of usual suspects all the luck in the world because -unless something changes in a massive way- the outlook is bleak.

The 80:20 Report: Reducing the Care Gap

Background to the 80:20 Report.

Figures released by Skills for Care in 2017 showed that at any one time there are 90000 vacancies in social care. As support workers make up 67% of the social care workforce it is estimated there is an approximate shortfall of 60000 support workers This is in line with what I hear every day with particular regard to the recruitment of PA’s (personal assistants, carers, support workers, assistants, supporters)

‘The last 2 years have been a nightmare’ said one man from the North of England, ‘I cannot find decent PA’s.’ In London there is despair, mothers at their wits end as they take once again to filling the gaps, putting up with PA’s they do not feel are up to the job in the knowledge they will not find anyone better, stepping into fill shifts, sleeping during waking hours so they can care through the night. ‘A vampire existence’ said one.

With a further identified £2.5Billion funding gap in social care it has become evident that it is time for drastic measures.

Key recommendation

All managers in social care including social workers, local government officers, national policy makers, charity managers, chief executives, board members, fundraisers, grant givers, department heads, national government officers and ministers for social care should stop doing the least productive 20% of their current job. This could include paperwork, meetings, panels, board meetings, procurement meetings, commissioning, report writing, report reading, filing reports or indeed burying reports. It is expected that this could cause some initial difficulty as much of the identified 20% will be shoring up status, unnecessary systems and outdated conventions. We believe, however, this is an achievable target with an additional buffer of non productive output. This simple action would free up the equivalent of 1 day a week when managers would be re-deployed as support workers.

Key Concerns

We have identified a possible skills gap between the proposed and existing workforce. We believe this can be overcome with a small but intensive training period while managers shadow existing support workers. Managers will reacquaint themselves with core values of patience, trust, fun, tolerance and empathy. Many of the proposed workforce will have entered the social care arena to help others live better lives. We see this at the heart of a good PA skill set.

We have identified further areas of concern including but not limited to sole working, self motivation, long hours and low pay. To ease the transition we propose salaries should remain the same in the probationary period. It is expected, however, that with the increased fulfilment from the new role and improved job satisfaction a reduced salary level will be acceptable. The anticipated savings could be deployed to narrow the pay gap between the new and existing workforce.

Key benefits

Workforce gap significantly reduced: The current vacancy level would drop by more than 50%. Conservative estimate of 247000 managers in social care, ( 20% of their time equivalent to 49950 support workers)

Increased Satisfaction: Managers address a problem directly rather than devolve or outsource to other agencies.

Increased Ownership: Managers involved in the day to day implementation of their plans and policies will be rewarded with an immediate feedback loop.

Increased Motivation: Managers feel a greater sense of connection to the people within their care

Greater accountability: Managers feel more accountable for mistakes as they will see the direct consequences on the people they care for.

Greater Cohesion: Managers more likely to stand alongside families and people they support to challenge funding levels, improve community integration, campaign for better pay and equal opportunities. Families will learn to trust those in management roles.

Efficient and Streamlined Services: Managers will start implementing simpler and more cohesive policies.

This transformative approach to care, whereby all those involved in the care industry would actually care, will have far reaching consequences for the industry as a whole and for the people it is intended to support.

Peer review
Advise to bury on a little known website, put it out on a Bank Holiday Friday and enjoy the sunshine.

An Inquest

Who would have thought inquests would be part of the vocabulary of parents with children with learning difficulties? The same vocabulary that has already been expanded to encompass a raft of meaningless titles, plans, initiatives, slogans and campaigns. Designed in the absence, all too often, of support, to make us believe that our children have a right to a fulfilled life, that they will be treated as equals and that they will be cared for and kept safe.

As our children with additional needs grow into adults with additional needs parents are chastised for being over protective, for making decisions for them and for interfering with their lives. All the experience we have built up over the years, all the knowledge, the love and care is pushed out of the picture as practitioners move to a position of power. Our voices become silent echoes in our heads.

My lovely daughter has epilepsy. So this means I have 24 years experience of epilepsy. I am an expert on her epilepsy. I know this as much as I know anything. That does not necessarily mean she will not die of SUDEP ( which seems to be a bit of a catch all and little understood phrase for the unexpected deaths of people with epilepsy).  

It does mean, however, that I will take all the steps I can to keep her safe. It does mean we have an epilepsy plan. It does mean we have emergency protocols that we follow. It does mean when it was suggested we have a sensor mat instead of a night carer I said no and when I was trying out a residential school with her and they turned down the night monitoring system because she was snoring I walked away, and when a hospice said they couldn’t check on her more than every half hour but they would leave her door open by the nurses station, then put her in a room down the corridor we didn’t go back.

So when I am reading the live tweets of the inquest into the death of 36-year-old Danny Tozer it brings up some pretty strong feelings. I see two loving parents having to challenge the home where he was living, questioning if they checked on him every 10 minutes and whether they were providing adequate supervision as agreed in his epilepsy plan.

When the people they are challenging are Mencap it is no longer just disturbing – it is astonishing. Some years ago I went to see a possible ‘college’ for my daughter. It had just been set up by a small independent provider. I was so appalled by what I saw, a class where the sensory experience was passing around a plastic bag containing cold takeaway, young people with gastrostomies and broken pumps, no overhead hoists for children in wheelchairs, children unable to sit unaided sliding sideways from broken wheelchairs and a young man with autism left in an empty classroom while a member of staff dismissed him, It’s only Alex, he said.

I cried when I left. Then I came home and called Mencap. I wanted help, an inspection, a visit, even just a phone call. I toured the switchboard but no one could help. It was not on their patch they explained. They didn’t work in that borough. No, sorry, they couldn’t help. My pleas fell on deaf ears.  They suggested I called the local authority. I did. And I suspected then that this was not a charity for people like me or my family, for all their PR and promotion.

Parents today do not know which way to turn. We have lost our voice. We are scared to speak for our children in case we offend the many people with disabilities who can speak for themselves. We are scared to complain in case what we have is taken away or a worse option is given as an alternative.  We are scared to ask for more assistance when we know there is so little to go round. 

We understand that our young people are adults, that they need space to breathe – but we also know that what keeps them safe is us and that no-one cares about them like we do. I have often said that I can keep doing what I do until I get to retirement age. But I realise, like the Tozers, there will be no stepping back.

At the Tozer inquest we heard that Danny had epilepsy and like any epilepsy it was unpredictable so Danny had a plan that said he needed ten minute checks. In Danny’s plan it should not have had to say that Danny also needed kindness and care, but it took an independent consultant – paid for by Danny’s parents – to point this out to staff. It didn’t say that when staff shortages meant Danny couldn’t do the things he loved that his parents had to step in. And again when the same staff shortages made Danny unsafe that they had to pick him up and take him home, but they did anyway. The same parents that tried again and again and again to make things work were the same parents who were blamed for not doing enough and the very same parents who made Danny’s life worth living.

It is a bleak day for all of us when support workers have to be taught to be kind, to build rapport. It is a bleak day when epilepsy is so misunderstood that an epilepsy plan is not followed to the letter. It is a bleak day when the parents of a 36 year old man, with 36 years of accumulated knowledge and wisdom, are sharing that knowledge and wisdom at an inquest examining the premature death of their son. It is a bleak day when their adversary is a leading charity that positions itself as the voice of people with learning difficulties and their families. It is bleak day when it takes an inquest to uncover mistakes, everyday sloppiness and establish accountability in a system littered with people who could have done better.

I have made mistakes along the way as a parent of child with special needs. I have learnt things the hard way. I have faced my own failings and I know they may come again. But I have learnt from my mistakes, I have admitted my mistakes, I have learnt from the good people around and I will continue, I hope, to learn. That is all that we can hope, to do our best, to share knowledge, to be humble and to learn. If this approach had been taken by Mencap and it’s staff when Danny was alive would an inquest have ever been needed?

I have learned lessons from the Inquest of Danny Tozer. There is much to do, to keep on doing, to keep on fighting and shouting and raising our voices to keep our loved ones safe.  Just as I wish that inquest was no longer part of the vocabulary of my world I would like to thank Rosie and Tim Tozer for having the courage and strength to pursue justice at an inquest so the rest of us can be reminded why it is worth fighting. And I hope that when all the witnesses at the inquest reflect on what they cannot now remember they will wonder as one good parent did last night, What more could I have done when Danny was alive?

The CaminoLB

A List

The rain, the pain, the joy, the laughter, the stories.
The sun, the mist, the hail, the dogs, the cows, the calves
the coats on, the coats off again.
The sweets, the nuts, the wine, the beer, the chips, the eggs
the coffee, the cake.
The doctors, the activists, the clowns, the mothers, the fathers, the sisters,
the grandmother.
The boots, the poles, the hats, the ankles, the blisters.
The tips, the trials, the teapots, the bayleafs, the bus.
The spirit, the fight, the screams, the tears, the prayers, the silence.
The monasteries, the cloisters, the dormitories.
The moss, the trees, the woods, the forests, the granite, the stones
the paths, the tracks, the roads, the mud.
The pride, the strength, the care, the love, the leaders, the loss,
the life, the earth, the living
And the dead.

Why You Can’t Rely On the News Media to Understand Disability

Here is a piece I wrote for UnHerd on the 15th of March

Twenty five years ago, I entered the twilight world of parents with children with special needs. My beautiful daughter was born with a rare genetic condition, CDKL5 that leaves her unable to communicate with words, see, walk or live independently. She needs 24-hour care to help support her complex epilepsy.  
I thought I was on my own before the advent of the internet and with no support network. I did not realise that I was among the hundreds of thousands of parents in the UK who have a child with special needs as almost all were out of sight and out of mind.  Shockingly, I was told by some well-meaning people it would be better to put her in a home and forget about her. 
Rarely did I read or learn about people like me and my family; we rarely featured in public dialogue.
This is changing but progress is slow. People with disabilities are appearing in adverts such as the latest McCains ad or in television programmes like Call the Midwife, but these are the exceptions rather than the rule. In news the narrative is closely focussed in three ways.
There are the extreme stories. The shock at the abuse at Winterbourne View; or the despair when a young man dies in a bath in an NHS Treatment and Assessment Unit, in Oxford; or the horror when a mother takes her life and that of her autistic child after she jumps off a suspension bridge. Once the initial furore is over, the fight for justice and change is often a battle left again to families.
Then there are the stories of heroics. This week the media celebrates the work of Stephen Hawking, that brilliant scientist, and focuses on how this was achieved despite his ‘desperate disability’, while almost every other person living in Britain with ‘desperate disability’ goes unnoticed.

And, lastly, there are the scroungers. The supposed parasites who live off the state, rip off the state and give nothing back seen fleetingly in headlines. 
Rarely, though, do I read stories I recognise. Stories concerning people like my family, and all those others I meet.
The everyday lives of ordinary people do not make great headlines, which is why the lives of people with special needs and their families go largely untold, unseen and unrecognised. And this is a problem.
It means the issue of a broken social service system is not addressed; the weight of paperwork and accountability required from families that far outweighs that which is demanded of corporates is not discussed; decreasing budgets for respite are not argued over; and the reality that for many people leaving school there is no future is not faced. 
At a recent meeting discussing “transition”, the intensely stressful period when young people move from children’s services into adult services, a third of the parents attending were in tears. They were learning there was no future for their child: no supported housing, no further education, no jobs and no support. Child services may be minimal, but adult services are almost non existent particularly for those with more moderate disabilities. 
Nowhere is this reported.
And so the fact that nearly a third of those in prison have a learning disability or difficulty goes unnoticed. So too does the fact that large employers, including local authorities and charities, fail to keep records of how many people with disabilities they employ, even as they ask others to make workforce accommodations. Who talks about the fact that the vital role played by the paediatrician suddenly halts at 18, and that no one oversees adult health? And what about how the money spent on bureaucracy is continually rising, while frontline services suffer?
There are seven million carers like me in Britain, an invisible taskforce taking so much strain off the state. Did you know that carer’s allowance is set at £62.70 for a minimum 35 hour week? And if a carer earns more than £116 a week, they lose that? Does anyone write about how carers are usually on call 24 hours a day? That their days leave them broken, exhausted and beaten till they themselves are in need of care. 
As a nation, we do not invite people with disabilities to our homes. We do not meet them in our workplaces. The tragedy is we do not really know them.
And because this reality is not recounted, the pockets of good practice – which if shared would raise hope and expectations for people with special needs – go unnoticed. So local arts groups working in a truly integrative way are uncommended. But I could tell you about Access All Areas, with projects like Spinning Wheel, in which people such as my daughter are seen as a vital part of the performance. Or there are the social evenings hosted by parents at Shoot Up Hill, north London, where families gather to share a meal around a table with their adult children. There are the cafes and the industries like Harry Specters , a wonderful chocolate company, set up by parents who otherwise could not see a future for their son or daughter. We do not see employment schemes such as ProjectSEARCH, through which young people with learning difficulties spend a year working in hospitals and hopefully graduate into employment. 

People with special needs and their families have been painted into a corner where they are invisible. They are treated with a casual indifference at the same time as the likelihood increases that we’re all going to need better care and support in the future. Only today I read a story that more than one quarter of all British adults are living with at least two long-term health conditions. What better way to find out how to make our currently malfunctioning system work than to examine what the world of disability already knows?
Mainstream media need to pick up on issues that families of children with special needs have been shouting about on social media for some time. For by ignoring these stories all our futures are damaged.
By embracing the world of disability and recognising the value of a perspective often untrammelled by normative behaviour we can find out things about ourselves that maybe we didn’t want to know. Perhaps we will realise that many of those things we strive for aren’t quite so important after all. It’s time our stories were heard.

All the Pretty Flowers

I always had a plot, a small plot. I grew pansies first, purple. Purple with deep amber eyes, then primulas, creamy yellow petals. Pansies, primulas, roses, pinks, all the pretty flowers, snowdrops too, pure white against hard frost, too early in the year, before we were really ready for them.

I can’t remember when I turned to ferns. The crown comes first, rust, tendrils unfurl, some delicate, some robust, lush with a damp cancerous smell. Sometimes I lie amongst them and feel what it might be like to die. Cold stone dead. In a coffin, closed. I like it, then it frightens me.

Gardening was what I learnt at the institution where I was sent when I was young. I was carrying the old priest’s baby. It was not my choice. ‘Shame, shame,’ they said and fed me pills and lies. When the government changed it’s plans I was the last to leave as they believed I was a danger to the community.

I have a house here on the Somerset levels where a cold wind drags across the marshes and the waters rise to the bottom of my window. It is not my house but they say that I can stay as long as I am no bother to any body. I smile at my neighbour’s son, but he says that I am soft and taps his head.

In the place where I lived they called me worse, retard, feeble minded, imbecile. I learned to close my ears to that and screams and jangling keys that locked us in. They said it was not a prison but we were not free to leave. It was strange at first living on my own. In the place where I was held we shared a ward, a room with fifty beds, one toothbrush and a bath with dirty water.

Now a nice carer comes and talks in words chosen not to make me cry. I take her to the library in a bus and trail my fingers across the books and look at pictures of things I’ll never see. I choose my clothes and keep them neat. In the home I thought I saw my ghost, it was only my friend Mabel wearing the dress that I’d worn last.

I visit the small church on the corner and feel the kneelers embroidered with the stations of the cross. I touch the blood below the crown of thorns and wonder why he had to die this way. I do not pray but I listen to the silence.

In the summer when the riot of sunshine and dayglo colours explode along the river and dogs bark and people come in boats and drink beer from bottles, I lie down on the dark bank. It is cool and safe and secret.

My baby did not live, she did not even cry but I still know the great pain of her birth. The midwife said, ‘It’s for the best, she’d have been stupid anyway’.

Now she visits me amongst the musky earth and ferns, I feel her cool breath on my back and the tendrils of her hair.

Deep Care

Earlier this week I read an excellent blog post from Kara Chrome, The Chair of Anthropolyatrics where she discussed the need for the role of an adult paediatrician, a conversation that has been rumbling around the world of families like us for sometime.
They would do well to look at the model working for our lovely daughter.

It is no secret that when she came back from residential school she spent a year of her life dying. I slept on her floor and the walls closed in around us. We were rescued from this desperate place by palliative care at Great Ormond Street under the guise of consultant Fin. She came to our house, she saw our distress, she arranged a psychologist for me and night care for Iona. We found a solution to allow Iona to go back to education and slowly life became almost normal. I can still remember my overwhelming distress when our lovely daughter a few years later had to move into ‘adult services’. The team that had provided us with warmth, understanding and deep care would be gone and once more we would be floating around in an unsupported alien world.

But the transition was managed. Fin came with me and Iona on our first appointment to the proposed adult neurologist. When I left in tears having encountered someone once again who knew best and didn’t listen, she found me the kind of neurologist I could work with, someone who listened, who cared and who put quality of life way over quantity of seizures. That next step was replacing herself.

She broke a new pathway to the adult hospice service and took me to meet two different palliative care consultants. I chose the one who made me laugh the most. He resides at the Marie Curie hospice in Hampstead. I go with Iona every 3 months for a visit, we chat, we laugh, sometimes I almost cry as he checks in with both of us. We develop new understandings and I sometimes learn new procedures. We talk about fears, exhaustions, holidays, bloods, bowels, sleep, drugs, skin, life and he always asks if there is anything else they can do to help. As much as I have come to hate hospitals I have come to love hospices.

Yesterday I sent a last minute email about a holiday I will take. A scary time.

This is what I got back this morning, ‘I have popped Iona’s name into a bed slot for the period that you will be away and I will let the team know of the process so please rest assure we will be here as a backup – I hope all is calm during that time –  and enjoy your well-deserved break :)’
This was my reply, Thank you so much. Your help just makes it all possible

It seems to me that when a person with learning disabilities becomes an adult they need a consultant who listens, who cares, who has access to specialists when they are needed, who has time and who takes time to find out who you are and what will help. There is little room for this in big, monolithic hospitals, and GP’s who need the support of paediatricians in childhood are unlikely to manage an overnight change as the young person celebrates their eighteenth birthday. People with special needs are dying younger than they should, their health care is not as it should be. It is time to stop talking, start applying common sense, and truly value the lives of people who have so much to give.

Full disclosure

There is something so wrong with a system that allows a young man with learning difficulties die of complications arising from constipation. Richard Handley went for a poo on average less than once a week in the 42 weeks running up to his death. When he was finally admitted to hospital they operated and removed 10kg of faecal matter.
I remember a conversation with a friend when she registered her shock that ‘care providers’ record bowel movements in people’s notes. Well not so big disclosure, we also record them in our lovely daughters diary. We, parents of a daughter with profound learning difficulties and low muscle tone, know the dangers of bowel obstruction and know that it can lead to premature death. Not only do we note bowel movements, we also record their consistency, the food she eats, and her use of regular laxatives and enemas. Too much information I hear you cry, well more, we, her family and her carers don’t just rely on notes we also talk in sometimes graphic detail, about the consistency and size, sometimes using words like explosion or at the other end of the spectrum, pellet. Sometimes we apologise to our lovely daughter for talking of such things, but not as much, as we would have to, if we ignored the issue and talked only of the weather and the colour of her clothes.
I have laughed in the knowledge that comes from shared experience with my fellow mothers of young people with special needs as we have sat in restaurants and over a bowl of pasta discussed the bowel movements of our offspring. But I would not be laughing now were I in the courtroom listening to this sorry tale, nor would I be laughing if I was one of those charged with supporting Richard Handley and failing, but most of all I would not be laughing if I was his mother and had trusted those people to look after him and keep him safe.


Yesterday I went to the Learning Disability England conference in Birmingham where the station is extraordinary and the venue more ordinary.
In a vast room, full and crackling with anticipation, there was much laughter, honesty, heckling and a smattering of sadness too.
Donald took to the floor shortly after lunch. He described himself as a man with learning difficulties and then taught us a lesson. He found himself some years ago with no friends and eaten up with loneliness. His fridge was full of milk he didn’t drink and bread he wouldn’t eat. He bought them to make himself feel validated, to prove that he existed. It was the only time in the day someone spoke to him. Things got so bad that the police were called.
He turned things around with support at work where they might just put an arm around him and tell him it will be ok on a bad day. He has also found his tribe at his beloved MK Dons, it is not just the football he loves but the people around him. Unexpectedly, at the old folks home he found a new passion. He was persuaded to join in a pamper session and loved the experience so much he now wants to train as a nail technician. He flashes his shiny black nails. What a man. I can’t help feeling that not only has Donald’s life improved but so has the lives of all the people that know him.
At lunch I met a lovely young woman, long flowing hair, deep eyes, who spent 7 years at college learning administration and volunteers at hospital in Nottingham. She longs for a part-time job as she wants to earn her own money. She is told she is either too over qualified or too under qualified. I would hire her in a flash.
What are we doing when we cannot see the extra stuff that people with learning disabilities bring to the workplace? We miss out not just on their skills but also their humanity, their honesty and their challenge to us to see the world differently. What are we doing when we exclude them from our perfect social circles?
Check out this video from Casa Carlota a Barcelona based design studio and see what might happen if we open our eyes to the possibilities of a good new world.
If you are not in a position to offer someone a job, take a tip from Donald. Say hello to someone you don’t know today. You might be the only person they speak to all day.

Justice For Laughing Boy

Justice for Laughing Boy By Sara Ryan

I remember it well. I was only too happy to hear my email ping and find the next bulletin of the Laughing Boy blog arrive. I opened it somewhat surreptitiously, sitting as I was in a busy but boring workshop, and read on. I read that Laughing Boy had died.

I felt physically sick. I left the conference hall  and cried.

I still think of LB often.

In Justice for Laughing Boy Sara Ryan tells the shocking story of how her son Connor, Laughing Boy, died in an ATU in Oxfordshire. He was a handsome young man with the future ahead of him, ideally involving a, ‘haulage company and a beautiful brown eyed woman’. He had learning difficulties and epilepsy and as some young men do was experiencing a hard time with anxiety and sometimes unpredictable rage. He was admitted to Slade House in Oxfordshire, an NHS Treatment and Assessment Unit, where he was under the care of a team of psychologists and ‘experts’. This is where he died, a young man with epilepsy drowned unattended in a bath.

This book is written with all the warmth, charm and humour that drew me to Sara’s blog in the first place. Many anecdotes stick with you long after reading. Many are laugh out loud funny. But what is not funny is that Sara has spent the last 3 years searching for accountability, apologies and justice. This is a story that starts with the joy, the unpredictability and the simple weirdness of living with a dude like Connor and moves on to the massive unrelenting task of fighting for justice 3 years after his preventable death.

Sara and her incredible band of supporters have waged war on a system that is convoluted, obfuscating and weighted against families. With resilience and tenacity they have stood their ground, they have pushed and cajoled as they fight to bring some kind of meaning to this awful and untimely death. Some of this has been played out in public meetings, court rooms and lawyers offices. Some of it on flags at festivals, on buses in Asturia and much of it on social media in a campaign that has caught the hearts of thousands.

But from every angle this has been an unjust war. Why should a mother have to fight so hard for justice when her son died in an institution charged to help him, in a bath.

This is a book that should never have had to be written, but it is a book that demands to be read.