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Whistleblower nurse who lifted lid on autism abuse scandal reveals how she felt powerless for 12 years – until she saw one victim being so violently restrained by NHS staff they broke his NECK. Article by Ian Birrell

  • A senior mental health team leader said she was asked to assist a cover up after staff restrained a patient with learning disabilities so forcibly he was paralyzed
  • The hideous story revealed by Elaine took place in an NHS psychiatric unit in the South of England six years ago
  • This newspaper has spoken to more than two dozen distraught families whose children have been stuck inside unsuitable secure units

A mental health nurse has revealed she saw staff in a secure psychiatric unit restrain a patient with learning disabilities so violently that they broke his neck – then left him lying in his own waste over a weekend.

The man was only taken to hospital two days later, after doctors intervened, and was found to be paralysed.

The senior team leader, who does not wish to be identified but I will call Elaine, says she was then asked to assist a cover-up at the NHS hospital but refused and quit her job instead.

‘I had to leave because this incident and the aftermath went against everything I believe in,’ she told The Mail on Sunday. ‘These places are horrific, they are barbaric – we have created a system that is simply geared to abuse.’

Four Hospital workers Struggling with a patient. A mental health nurse has revealed she saw staff in a secure psychiatric unit restrain a patient with learning disabilities so violently that they broke his neck

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Four Hospital workers Struggling with a patient. A mental health nurse has revealed she saw staff in a secure psychiatric unit restrain a patient with learning disabilities so violently that they broke his neck

The whistleblowing nurse, an expert in restraint techniques, stepped forward following our campaign to stop the routine locking up of teenagers and young adults with autism and learning disabilities. Last week, two other nurses and a senior carer blew the lid on what they called ‘shameful institutionalised abuse’ taking place behind the locked doors of a different institution, Meadow Lodge, a privately run unit in Devon funded by the NHS.

Ian Summers said he saw patients more often violently held down, attempt suicide and forcibly drugged while working in the unit holding vulnerable teenage girls than when he looked after killers and psychopaths at Broadmoor high-security hospital.

This newspaper has spoken to more than two dozen distraught families – some breaking gagging orders – who have told how their children have been taken from them for years and stuck inside unsuitable secure units that only lead to mental deterioration.

Much of their anger has been focused on private firms charging up to £730,000 a year for each patient – but the hideous story revealed by Elaine took place in an NHS psychiatric unit in the South of England six years ago.

The victim was a 36-year-old man with mild learning disabilities. ‘He was lovely if treated the right way,’ said Elaine, who is in her late 30s. ‘But there were four members of staff who did not like him, so they wound him up and he became abusive in response.’

She said the carers held him down before dumping him in a tiny seclusion cell. ‘Normally he would pace up and down in there but he lay on the floor in his own faeces and urine. They said he was putting it on and left him there for two days.

The hideous story revealed by Elaine took place in an NHS psychiatric unit in the South of England six years ago (file image) 

The hideous story revealed by Elaine took place in an NHS psychiatric unit in the South of England six years ago (file image)

‘Only when the consultant came in was he sent to hospital, where they found his top two vertebrae were broken. He was in agony.’

The man was left paralysed for two years, eventually recovering some ability to walk with sticks after intensive therapy at another hospital. Elaine claimed she was then asked to cover up the incident by colleagues. ‘I was supposed to say it was an accident and there had been proper restraint methods used. I refused, so they made it impossible for me to work and I quit.’

She was relieved to leave a system she had joined full of idealism, inspired by an autistic godson and a relative who killed himself, but came to hate over 12 years working in secure units and ‘short-stay’ assessment and treatment units (ATUs).

The nurse said there was frequent abuse and bullying of patients – one man with Down’s syndrome who loved drawing would have his crayons hidden by staff to infuriate him – and regular over-medication to sedate people. ‘There is this view that staff are normal people and patients are not, which leads to institutional abuse across these ATUs and secure units.

‘It is difficult not to get sucked in and become part of the system. I have worked in more than ten of these places and I wouldn’t put my dog in one. They should be bombed.

‘Everything is locked, there is lots of seclusion and restraint when six adults push someone on the floor. It’s horrible.’

The use of restraint in ATUs has soared in recent years, rising from 15,065 incidents in 2016 to 22,620 in 2017. There is also growing concern over use of long stretches in solitary confinement, with patients held in padded cells under permanent observation. ‘If someone shows signs of challenging behaviour they are secluded, which is awful,’ said Elaine. ‘Imagine being placed in a room 6ft by 6ft with a plastic mattress and no access to a toilet unless a full restraint team accompanies you.

‘You are fed through a hatch, spoken to through a hatch. How does this help anyone?’What is autism? By The National Autistic Society

  • She said such units were especially grim for people with autism. ‘None of them is a nice environment for such people since they respond well to routine, comfort, the security of a family environment. So this noise and chaos, with alarms ringing and maybe ten people in a ward all demanding help, is never going to go well for them.’

Families have complained that this kind of incarceration is ‘a spiral of cruelty’ since innocent people are shut in conditions that only serve to intensify their anxieties and stresses, which then makes it harder for them to win freedom.

Yet this latest whistleblower, who now works to free patients, said families do not have a clue what really goes on behind locked doors.

‘I tell parents they should never seek help from the system because they will lose control of their child,’ Elaine said. ‘Ask for help and you risk losing your child.’

This is a terrifying indictment of our public services. Yet it is one I have heard echoed by despairing families, such as one distraught man who asked for three days’ respite help only to have his autistic son locked away for three years so far.

Elaine believes a broken system is being fuelled by big profits, with private groups expanding operations despite Government pledges to move people with autism and learning disabilities back into supported living in the community.

There are 2,375 people with autism and learning disabilities held in assessment and treatment units at a cost of about half a billion pounds a year, with the number of children more than doubling over the past three years, and scores more are held in other secure units. One man is thought to have cost taxpayers £10 million after being held against his family’s wishes for 18 years.

More than half the patients in ATUs have been detained for at least two years, and almost one in six for more than a decade. ‘It is all about money,’ said Elaine. ‘Why else do they keep people in these conditions, costing maybe £7,000 a week, when other mental health services are struggling and community facilities crumbling?’

Elaine, who has helped extricate 13 people over the past five years working as a care partner with local authorities, added: ‘I once thought I could save every autistic person in the United Kingdom – but sadly I am only able to help a handful.’

We trigger 4th autism inquiry  

A major investigation into the abusive care of patients with autism is set to be launched by MPs – the fourth since The Mail on Sunday revealed how hundreds of teenagers and young adults are being locked up, forcibly drugged and violently restrained.

It is understood the Health and Social Care Select Committee, chaired by Conservative MP and former GP Sarah Wollaston, will examine the scandal and the floundering care system that leads to routine abuse and detention.

Westminster sources confirmed they were deciding on the scope of the investigation, which is likely to begin in the spring.

‘We are very keen to look hard at these issues,’ said one key figure.

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Health Secretary Matt Hancock has already told the health watchdog the Care Quality Commission (CQC) to investigate after admitting that he was ‘deeply shocked’ by this newspaper’s revelations that children as young as 13 were being incarcerated in secretive secure units.

Distraught families have told how relatives with autism and learning disabilities are locked in solitary cells, fed through hatches like animals, and forcibly injected with drugs to sedate them.

One man has been held for 18 years, and 40 autistic patients have died in assessment and treatment units since 2015, often in abysmal conditions.

But a group of cross-party MPs last week accused Mr Hancock of ‘backtracking’ over such ‘inhumane detention’ in the Government’s new ten-year plan for the NHS.

The plan only commits the NHS to reducing the number of people with autism and learning disabilities in hospital units to less than half the 2015 levels by 2024, despite previous pledges to end such detention.

The MPs – including former Liberal Democrat Minister Norman Lamb, Labour’s Shadow Minister for Mental Health and Social Care Barbara Keeley, and Tories Johnny Mercer and Charles Walker – accused Mr Hancock of abandoning a target to cut numbers held by up to half by March this year.

The Health and Social Care Select Committee, chaired by Conservative MP and former GP Sarah Wollaston, will examine the scandal and the floundering care system that leads to routine abuse and detention of people with autism 

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The Health and Social Care Select Committee, chaired by Conservative MP and former GP Sarah Wollaston, will examine the scandal and the floundering care system that leads to routine abuse and detention of people with autism

‘Those held in institutions, who could live independent lives with support, have their human rights breached in an unacceptable way,’ the MPs said in a letter to the Health Secretary. ‘We know the use of force is endemic in many institutions, which is a further assault on their human rights. There is also grave concern over use of medication on patients.’

Mr Lamb, who organised the letter, said he was horrified that the Government was effectively encouraging the NHS to ‘take its foot off the pedal’ to end abuse.

Mr Walker, who has admitted to his own mental health issues, called on the Government to act quickly. ‘This has been overlooked for too long and we can’t let this suffering continue,’ he said.

Harriet Harman, chairman of the Joint Committee on Human Rights, which has already started its own investigation, has also written to Mr Hancock over ‘perverse incentives’ that lead to detention in ‘inappropriate’ institutions.

She demanded to know if private providers had a ‘vested interest’ in keeping autistic patients locked up, which can cost taxpayers £730,000 per person a year.

Ms Harman also asked if divisions between the NHS and local authorities stopped patients being freed. ‘This is not a good use of public money given that community care is often less expensive than inpatient care,’ she said. Her letter followed questioning by the committee last week of three senior NHS and CQC officials. ‘They just spouted gobbledegook and theory,’ said one infuriated MP.

The Mail on Sunday has also discovered that a report commissioned by the Department of Health and Social Care before the Winterbourne View scandal in 2011 – which revealed abuse in a privately run Gloucestershire care home – warned that the model of private provision, funded on debt, would frustrate efforts to free those being confined.

After the Government refused to publish the findings, it was released by a think-tank.

Rob Greig, former national director for learning disabilities, who co-wrote the report, said: ‘I was very disappointed that they [the Government] showed little interest in what we were saying.’

Over the past decade, the proportion of people with autism and learning disabilities in privately-run beds has soared from one-fifth to more than half as new players muscled in and opened secure units despite Government pledges to close them.

Children’s Commissioner Anne Longfield is also investigating the scandal.

THE STRUGGLE IN SEND HURTS US ALL. IT’S A SIGN OF SOCIETY GONE WRONG By Tania Tirraoro.

Yesterday I was interviewed by BBC TV news about the Ofsted Annual report. It’s not an unusual occurrence, being contacted by various news organisations to talk about the crisis in SEND. It’s just depressing after more than a decade – and four since the “reforms” – I’m still having to say the same thing.

Almost every report that comes out of charities, researchers, Ofsted and the DfE’s own commissioned research  – many of which we have covered on SNJ — reports the same picture: Not enough money, not enough SEND in teachers’ training, too many children being excluded, too many poor outcomes for disabled children, rising numbers heading to Tribunal, not enough mental health support in schools, too high criteria for access to CAMHS, insufficient support in mainstream, too, too many children in crisis.

It physically hurts to keep writing about it. And I know, from having been there, how much it hurts families going through it. I want to give up and run away and do something that actually pays, now my boys are older (My eldest was 21 earlier this week, my youngest is 19). But those families still deep in the hell that is the SEND process, and those about to plunge, cannot walk away; indeed, they know they MUST not walk away despite the stress, the hurt and the fury that the system invokes.

Behind the Ofsted report headlines

The headlines of the report were covered in the press yesterday, who can jump on it early but whose reporters miss the depth of context, so I’m adding further quotes from the report here.

The BBC producer I spoke to yesterday for example didn’t know about the SEND inquiry. This is why, although it’s heartening that I’m constantly asked for help by journalists covering the SEND story du jour, the fleeting nature of the news cycle means it’s forgotten the next day.

“Something is deeply wrong when parents repeatedly tell inspectors that they have to fight to get the help and support that their child needs. And I’m not talking about middle class parents wanting extra time in exams for their child. I mean adequate support for our most vulnerable children with SEND, which is a basic expectation of a decent, developed society. We need to do better.

Amanda Spielman, Ofsted Chief Inspector

The Ofsted report was damning in the extreme about SEND provision – all it had to do was look at the results of its own (and CQC’s) SEND area inspections, where almost half of those local areas so far inspected have failed to meet expectations. And we’re still not even halfway through the first round.

“In the second year of our local area SEND inspections, we have seen a continuing lack of coordinated 0–25 strategies and poor post-19 provision. We have seen a continuing trend of rising exclusions among children and young people with special educational needs and/or disabilities (SEND). Mental health needs are not being supported sufficiently. The quality of education, health and care (EHC) plans is far too variable. Critically, the gap in performance and outcomes for children with SEND is widening between the best and the worst local areas.”

Ofsted Annual Report 2018

“We are still seeing too many local areas providing a sub-standard service when it comes to SEND provision. At the end of our second year of LA SEND inspections, we have inspected 68 local areas. Thirty of these have been required to provide a written statement of action.”

Ofsted Annual Report 2018

And, I might add, that any number of those areas who “passed” their SEND inspection should not have, according to local parents.

That translates to tens of thousands of disabled children being failed by their school, health service, social care and local authorities. And, as I said, that’s just from the areas that have been inspected so far. It’s sickening. Because these are not inanimate institutions, they are run by tax-payer-funded human beings who are systematically failing in their legal duties, and their jobs, to support vulnerable children.

It means children aren’t being assessed when they should be and when they do get an EHCP, it often isn’t legally compliant:

“… the quality of these (EHC) plans is far too variable within some local areas and across the country, and contributions from care services to EHC plans are weak. The areas that have successfully implemented the government’s reforms are jointly commissioning services that support parents and lead to good outcomes for young people….

…But many EHC plans have not been successfully implemented. As a result, the gap in outcomes for children with SEND continues to widen. Identification of SEND is weak and those who do not quite meet the threshold for an EHC plan have poor outcomes. Understandably, this leads to many parents feeling that to do the best for their children, they need to go to extreme lengths to secure an EHC plan, which of course not every child will need.”

Ofsted Annual Report 2018

Or at least they wouldn’t have needed and EHCP  if they’d had early enough intervention. LAs know early intervention works—and yet so many deny assessments at an early stage and have closed, or are planning to close, local Children’s Centres. They expect parents, often without cars, to be able to travel across or between towns via expensive or non-existent public transport – with children in tow – to get to their next nearest. Ain’t gonna happen.

“We are still seeing too many local areas providing a sub-standard service when it comes to SEND provision…Frontline workers are clearly dedicated and professional, but improvement in many local areas is often slow and inconsistent. In particular, in the areas we visited, we are seeing:

– a continuing trend of rising exclusions among children and young people who have SEND

– mental health needs not being supported

– children and young people who have autism waiting up to 2 years to be diagnosed; some were not being educated at all during this time

– a continuing lack of coordinated 0–25 strategies and poor post-19 provision”

Ofsted Annual Report 2018

Is funding to blame?

Yes, partly, but it’s far from the only reason. Lack of funding is integral, especially fully-resourcing the 16-25 year olds who were promised much, only to discover the Children and Families Act has played out like the proverbial Mercedes in the driveway but no food in the fridge. If that’s too obscure, it means it’s all show and no substance.

But it’s lack of culture change that is just as important. The very thing we have said from the beginning that was crucial to success. I haven’t heard much in the SEND inquiry about this specifically (though see more, further down).

Fine words about improving outcomes for children with SEND, as echoed in LAs up and down the land, have not, and are not, translating into changes in belief. It’s like their lips are moving but their heart’s not in it because somewhere, deep down, they think it’s either the fault of feckless or faulty parenting or, conversely, middle-class, sharp-elbowed parents “gaming the system”. I thought this attitude had disappeared, but I was asked this very question on LBC Radio just the other week. Yes, I gave him an ear-bashing, but the “hostile environment” brought by austerity and compounded by Brexit, has ramped up attitudes against anyone who needs to ask the state for some kind of help, against people with disabilities and against those from racial minorities.

Off-rolling, schools’ dirty little secret, uncovered (again)

Ofsted describs off-rolling as “the practice of removing a pupil from the school roll without a formal, permanent exclusion, or by encouraging a parent to remove their child from the school roll, when the removal is primarily in the interests of the school rather than in the best interests of the pupil. Off-rolling in these circumstances is a form of ‘gaming’’. 

This is not the same as a formal, legally conducted exclusion and Ofsted has identified around 300 schools with ‘exceptional levels’ of pupils coming off school rolls and not reappearing elsewhere, between Years 10 and 11. Ofsted acknowledges it’s the most vulnerable children who are more likely to be excluded or off-rolled. Its new education inspection framework (EIF) is aimed at changing this, by focusing more on inclusion as a mark of a good school, and less on league tables. Will it make a difference? Let’s keep watching.

Parents speak to the SEND Inquiry

At the same time as the Ofsted Annual Report was making news, six parents of disabled children were taking part in the SEND Inquiry hearings before the Education Select Committee in Westminster, three of whom represented parent carer forums.

The parents’ stories in the first half were bad and difficult to hear but not unique, far from it. They are stories we’ve heard repeatedly If you want to watch it all, you can do so here.

Earlier this week, the Inquiry published 600 submissions to the Inquiry and said it will still accept further submissions until the publication of the report.

To be honest, I’m not sure what else can be said that they have not already heard, unless it is more about how the lack of culture change has heavily impacted on these reforms. As we said at the start, there is little point in changing the structure of a system if those administering it are going to simply overwhelm it by doing the same things they’ve always done because ‘that’s the way they do it”

Taking up this theme was the stand-out speaker, for me, Penny Hoffman-Becking. Penny is from Kingston and Richmond where her PCF, SEND Family Voices, recently closedbecause the local authority was refusing to work with them, leaving them to conclude that co-production in that environment and culture just wasn’t possible.

I’ve isolated a few minutes of Penny speaking because what she says sums up the experience of many parents who have worked their guts out in PCFs, only to end up disillusioned and exhausted. I urge you to watch and tell us if that’s also your experience too.https://www.youtube.com/embed/nmp5vLbM-pU?version=3&rel=1&fs=1&autohide=2&showsearch=0&showinfo=1&iv_load_policy=1&wmode=transparent

The other issue is Brexit, yet again. If parliament is dissolved because of a snap election, the SEND Inquiry goes bye bye. And that really will be a tragedy.Advertisements

MANCHESTER EVE NEWS ‘An inquest heard that former sea cadet Jane Kavanagh, 33, killed herself the next day after struggling to get support from council and healthcare officials.

A single mother who killed herself after struggling to care for her disabled daughter called her GP to say she was suicidal – and was offered an appointment 12 days later.

An inquest heard that former sea cadet Jane Kavanagh, 33, killed herself the next day after struggling to get support from council and healthcare officials.

She had been a full-time carer to her 15-year-old daughter, who was autistic and suffered from the degenerative condition cerebral ataxia.

Her parents did offer support, but their house was deemed ‘inadequate’ by council officials in Rochdale – so Miss Kavanagh and the children had to move to a messy nicotine-stained property described by family members as ‘appalling’.

In a suicide note to her parents, Alan and Irene Farrar, Miss Kavanagh, who lived on her own with her two children, wrote: “I just can’t find a way to drag myself out of this f.cking sh.thole of a life, I hate myself. I want to die all the time, I have for a few months now, every day.”

She was later found by neighbours hanged at her home in Rochdale having earlier left the children with Mr and Mrs Farrar. Miss Kavanagh killed herself on Saturday, April 21, this year. It emerged during the inquest that on the Friday she had called her local GP surgery and explained that she had suicidal thoughts – she was offered an appointment for 12 days later.

Tests showed she had been surfing the internet for ways to take her own life.

At the Heywood hearing Mrs Farrar wept as she said: “Jane was 19 when her first child was born and she had some difficulty with getting assistance from the authorities and she became her full time carer.

“Her eldest was diagnosed with autism but it took a few years for the authorities to accept that. She then started having trouble with her leg, which got worse and worse, and she was diagnosed with cerebellum ataxia in 2015 – she was just 12 and had lots of hospital appointments in Manchester and one in London.

Jane Kavanagh

”We helped when we could and they all used to live at our house, but they conducted a review and moved them out to a bungalow and her daughter moved to a specialist school.

“Jane wasn’t getting assistance at weekends or evenings. She was offered no respite. Her other daughter had some assistance from her dad.

“She wanted help for in the mornings, getting them washed and dressed and ready for school. She was looking after two children essentially on her own and she struggled. At first she was staying with us and her two children and there were no adaptions to the house or anything.

”She then went to a rented bungalow, but there wasn’t enough room for them all, so she was told to go to this new address as they said there was nothing else available. It was a mess, the walls were covered in nicotine, it was in an appalling state. She had to paint it and clean it herself.

“There was nothing there for her daughter, no adaptations to the bathroom, the bedrooms were upstairs, there wasn’t even a grab rail for the stairs. She had to shuffle on her bum to get upstairs. She spent the last 15 months in that property.

”She lost a lot of weight and she sometimes rang up distressed and said she felt she would end up in a psychiatric ward. We were concerned about her drinking, she was drinking a lot. She had financial issues too.

“On April 21st we had her daughter stay over on the Friday night, Jane then came over the Saturday morning to pick her up. She got her about lunch time and then came back at teatime. She told us she had eaten, so she had something. She seemed to be in a happy mood.

Jane Kavanagh

“Jane then asked to go to her friends and promised she would be back for 8pm. She didn’t come back. We expected her to stay over. Her daughter rang her, but her phone was off.

”Now we now have the same problems Jane had. Her daughter can wheel herself around but she needs constant care 24/7.”

Mr Farrar said: “We were absolutely devastated. We knew she had financial difficulties but no idea how bad. I went to the bank the day after she died and found that she had been transferring money to different people over the previous six months.”

Miss Kavanagh’s GP Dr Ayman Ramadan said: “In March 2018 she was talking about feeling depressed and her mother came with her. Although she seemed well, she was low in mood and was encouraged to self refer herself to ‘Healthy Minds’ so she could help herself.

Watch: The Samaritans – talk to us…

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SAMARITANS: TALK TO US…

”She rang the surgery on April 20 and wanted an appointment. The receptionist used the triage system and made the appointment for May 2nd. At the time there were no red flags with how she was behaving.”

Recording a conclusion of suicide Coroner Nicholas Flanagan said: “Jane struggled to obtain support and assistance in her care of her eldest daughter. She had significant help from her parents who lived close by and they provided a lot of assistance.

“They initially moved into a bungalow but they did not have the sufficient space as Jane did not have a bedroom. She was supplied with a property, which was not adequate.

“There was no mechanisms for her daughter to go downstairs, get into the bathroom or go to her bedroom. Nothing was adapted. The property was not in a good state of repair. They found it difficult to live in there.

Jane Kavanagh

“This affected Jane’s ability to care for her children and the cause of her stress was down to the care of her daughter. In December 2016 she presented to have gone through a mental health crisis and she was prescribed medication to alleviate the depression.

“There is no evidence her medication was regulated or reviewed. She was advised to self refer herself to the appropriate services. On April 20th, Jane rang the GP again and she said she felt suicidal. She requested an appointment and was provided the next available date on May 2nd, some 12 days later. There was no evidence a GP or clinician considered Jane’s case following the phone call.

“There is no evidence other organisations were being called in or were called by way of explanation for how Jane was feeling. I find Jane suffered from depressive conduct due to her being the primary carer.

THE ROYAL PARKS HALF MARATHON 2018 LONDON IS DONE…THANKS TO ALL OF YOU WHO SUPPORTED ME FROM THE BOTTOM OF MY HEART.

I really struggled yesterday for various reasons but I did it!  Here are some photos of me dancing wildly with my medal  – very happy in the knowledge that I have raised nearly £5,000!  Every penny of which will go to brave families with autistic children.  Lx 

happy in the knowledge that I raised nearly £5,000 for all of the brave families with autistic children Lx

Lucinda is running the Royal Parks Half Marathon for The Fred Foundation on Sunday 14th October! Anything at all you can spare?

https://uk.virginmoneygiving.com/fredfoundation

“Across the country many autistic families are struggling as the extreme financial cuts in social care and education bite harder every day. Children and young people are not even getting the education the State is obliged to provide by law without a fight. Parents are often so worn-down by the day-to-day caring of their autistic children that they cannot fight a fight that often ends up in court”…please click my link below to read more Anything you can spare very gratefully received xx

UK.VIRGINMONEYGIVING.COM

Royal Parks Half Marathon

Help Lucinda change the world! Make a donation now?

‘I WAS A CHILD CARER’ – When you are a carer, it can be hard to relate to your friends, with their “normal” lives. You have responsibilities. You have to grow up very quickly. “You can’t muck about and be so carefree.

‘I was a child carer – it made me who I am today’

Rhiannon Lucy Cosslett and her brother

From the age of 12, writer Rhiannon Lucy Cosslett helped look after her severely autistic brother. Like hundreds of thousands of other young carers, she took on major responsibilities early – but says it made her the person she is today.

Being a young carer makes you different from your friends. This is one of the first things that you learn. You visit their houses after school and notice how different their lives are from yours. Their houses seem tidy, quiet and peaceful.

Mine was the opposite.

My younger brother is severely autistic. He was diagnosed when he was four, but we knew there were issues before then.

Even as a baby, he wouldn’t stay still when you tried to hold him – my mum, Anna, said he was like an octopus wriggling in her arms.

As a toddler, he was hyperactive. He tore through our house, leaving chaos in his wake. He would climb furniture and banisters, empty cereal packets and cartons of orange juice on the floor, scribble on the walls.

Rhiannon Lucy Cosslett's brother

He didn’t sleep. He didn’t talk. We knew our lives would be changed by his autism, but we didn’t realise by how much.

I am six years older than my brother, and cared for him along with my mum until I left home in North Wales at 18 (my parents separated when I was 12).

It’s been estimated that 700,000 children and young people across the UK, some as young as five years old, are caring for family members. But the true number is likely to be much higher, as many are hidden from view.

I know what an isolating and difficult experience it can be – growing up, I had no idea there were so many other children out there in similar positions, caring for ill and disabled relatives.

When you are a carer, it can be hard to relate to your friends, with their “normal” lives.

You have responsibilities. You have to grow up very quickly. You can’t muck about and be so carefree.

Rhiannon Lucy Cosslett and her brother

I certainly didn’t misbehave – I felt that my mum, who did the lion’s share of the caring, had enough to deal with, without me being naughty as well. My brother barely slept and she was exhausted most of the time from getting up more than four times a night. I would care for him while she snatched an hour of sleep and, as I got older, for much longer stretches so that she could go to work or spend the evening with her then partner.

I did have moments where I felt quite separate from my classmates, who were still having their dinner cooked for them when I was preparing meals from scratch. On the other hand, being able to cook stood me in good stead in the long run, as did many other skills and traits I learned from being a carer – responsibility, compassion, empathy, selflessness, multi-tasking, patience and generosity.

A sense of humour was a must, especially when it came to toilet trouble. Mum and I cleared up enough poo for a lifetime (this may be why, at 31, I am still not sure how I feel about having children).

It taught me basic plumbing – give me some string and a coat-hanger and I can fix a broken toilet – but also how to laugh when you’re up the proverbial creek. You had to, because otherwise you would cry. Then again, we did lots of that too.

We had two floods and a fire, and endless weird and embarrassing moments. People loved my brother – he was a very cute child with a huge goofy smile and big blue eyes, but his behaviour was – how can I put it? – unpredictable.

Rhiannon Lucy Cosslett's brother

Sometimes when we were out and about he would take his clothes off and run around while we chased after him, waving his trousers desperately like a flag. He was always falling into lakes and rivers, or reaching into people’s bags of chips and plucking them out.

He had no sense of fear so you had to be hyper-alert. He once ran into a field with a bull, which was terrifying. Thankfully we got him out in time.

He also had tantrums in public and people would stare and make comments. I always confronted them when this happened – being a young carer made me quite feisty. I had a keen sense of injustice from a young age and that has translated into my journalism, particularly when it comes to the hardship and discrimination that disabled people often face.

Schoolwork was difficult as sleep was disrupted, and the house was really noisy all the time.

I learned how to concentrate even if all around me was total chaos. I developed a love of reading and tore through several library books a week. In a way, being a carer is what made me a writer. When things were difficult, I needed a way to escape, and reading provided that, but it also made me interested in people.

Rhiannon Lucy Cosslett and her brother

You learn so much about humanity when you are looking after someone vulnerable and you need empathy, a vital skill when it comes to creating your own characters.

Teachers didn’t always understand. I’m not surprised that Carers Trust Wales have found that many children who are carers are not known to local authorities. Adults often don’t think to ask, or when you try to explain why your homework is late, or indeed why you are, they will just say that you are making excuses. I’ll never forget the horrible reaction of an after-school drama teacher who refused to accept that I had missed a rehearsal because I had to look after my brother.

Nevertheless, for every nasty person there were many more kind ones.

I had a couple of close friends who lived nearby – Hannah and Kate – who have always been there, and would keep me company when I was on my own with my brother at home because mum had to work or pick up a prescription. (Hannah is now a mental health nurse and says her experience looking after my brother helped inspire her to pursue that career.)

As I grew older, I opened up to more friends about my home situation. They were all really supportive, treating my situation as though it were no different from anyone else’s. Sometimes people act as though they are uncomfortable around my brother because of his strange seeming mannerisms and noises, but they never did. They helped me realise that there is no such thing as a normal family.

My mum trusted me, and in many ways that worked out quite well – as long as I made sure my brother was OK, I could have people over and she could benefit from finally having a bit of a social life. Often friends would help put him to bed, and I remember being particularly touched to find my friend Sam reading him a bedtime story.

Rhiannon Lucy Cosslett's brother

Leaving home was hard. By that time, my brother was in a special school, staying overnight during the week and coming home at the weekends. Yet I still felt like I was abandoning my mum, who was finding it increasingly difficult to cope.

My brother had grown very big and strong and she couldn’t control him any more. He had also developed epilepsy, which needed careful management and supervision, and his obsessive-compulsive disorder meant that taking him outside was more and more difficult. She became very isolated.

I missed them both terribly, because although things had been hard at times, we were a family.

I cried for two weeks, and I think the sadness and the exhaustion are with me even now.

Although I have a good job and a happy life, there are some days where I still feel very low.

When my brother was nearly 15, things became so difficult for my mum that he went into school full-time. He is now 25 and lives in a care home. He is very happy there – his carers are brilliant, and I see him as much as I can for walks on the beach and trips out for lunch.

Rhiannon Lucy Cosslett and her brother

I am grateful for how lucky we are – not everyone receives such good government support. If the help hadn’t been there, I might never have left home. I certainly wouldn’t have gone to university or have established a career as a writer.

Whenever I meet young carers, I want to give them a hug and tell them that I know what they are going through.

They should be given more support – both practical and respite care. I certainly would have benefited from some counselling.

No child’s education should suffer because they are looking after a family member, they should be encouraged by adults, and given the help they need.

Sometimes I am asked if I wish my brother had been “normal”. It’s a strange question, because it’s essentially asking me if I wish he were a different person.

Rhiannon Lucy Cosslett's brother

Obviously, I wish that he did not have to suffer, which he does as a result of his epilepsy and anxiety. But I love my brother for who he is, and looking after him has been the defining experience of my life.

Caring has made me strong as well as sensitive. It has made me a kinder person and given me the motivation to fight for social justice. But most of all I feel lucky to have felt such profound, unconditional love for my little brother. That has been a gift.

HIDDEN LIVES – HAPPY FATHER’S DAY!

Anyone can be a father but to be a Dad to a severely autistic young person is quite something else.  So, to all the unsung heroes who care for autistic loved ones and especially to the Dads who care for profoundly autistic young people and never have a day off from worry or strain. HAPPY FATHER’S DAY.  We see you.

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