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Laura Fitzgerald

Laura Fitzgerald

I was diagnosed with Epilepsy aged 12 having suffer regular seizures both Grand Mal/ Tonic Clonic and abscent seizures. I was medicated with the medication Epilim (Sodium Valproate) 
The advice given to me by my Neurologist, was always to take my medication as this would help control my seizures, so trusting the experts always done so. When I first got pregnant with my daughter, my husband and I decided to have my ante-natel care at my local hospital as that was also where my Neurologist was based. Throughout all my pregnancies my medical team were aware I was on Epilim, and the advice my husband and I was given, was to carry on taking my medication and to increase my dosage of Folic Acid.

The children were all born, over a period of 5 years however with them all they always seemed to be ill, were never reaching milestones, had delayed speech etc.

Laurens 1st bath - weighing3lb

Laurens 1st bath – weighing3lb

I was convinced something wasn’t right. It didn’t seem right that all my babies were showing signs of illness, delayed milestones etc. When I was pregnant with my 1st daughter my mum passed away very suddenly aged 42. I was devastated by this and was very quickly diagnosed with depression. Having lost my mum the GPs, Health Visitors etc thought I was being paranoid, over protective mum when I would voice my concerns over the kids. I was always being reassured the children were fine and they would catch up.

My family x x x x

My family x x x x

One day I saw on the news a lady talking about the dangers of Epilim in Pregnancy, how whilst pregnant it could affect the baby, which could result in the baby having a condition called FACS (Fetal Anti Convulsant Syndrome) I was speechless watching this. I knew there and then, the children had this condition. It was as if a light had been switched on, everything the lady was saying was exactly what I had been saying for years. I rang the news immediately and was put in touch with Janet Williams. To cut a very long story short after months of tests, Drs appointments my children were diagnosed with FACS SYNDROME – the medicine I was prescribed HAD affected my babies. As well as the diagnosis of FACS, my children also went onto obtain diagnosis of ;

 

• Facial Dysmorphic Features
• Cerebral Palsy
• Incontinence
• Valgus Foot
• Hypermobility
• Speech & Language Delay
• Autisic behaviour/Dyspraxia
• Athsma
• Noise Intolerance
• Deafness and more

In November 2013, along with Janet Williams I Co-Founded FACSA – a parent/family support group for families affected by Epilim and other Anti Convulsant medicines. At the same time we also started campaigning in Government and have since been named as Government Campaign Group for Epilim (IN-FACT)

Thursday, 18 February 2016 19:00

The invisible link between Autism and Anorexia

 

 

Louise Harrington was starting to doubt that she had anorexia. She knew she was shockingly underweight, and she desperately wanted to gain at least 30 pounds. She had no desire to look like a model. She had no phobia of fatness. She wasn’t afraid to gain weight. She didn’t have any of the typical body image worries that overwhelm many people with anorexia.

Instead, what trapped Louise in a haze of malnutrition and compulsive exercise for more than 30 years was that eating too little and exercising too much blunted the feelings of overwhelming anxiety that threatened to drown her. (Louise asked that we not use her real name.)

The psychologists and psychiatrists she visited couldn’t comprehend what was driving her behavior. When she was in her 20s, one doctor told her she couldn’t have an eating disorder because she didn’t have a fear of fatness. Other therapists said she was either lying or in serious denial. The assumption that her anorexia was necessarily driven by a desire to be thin further frustrated and alienated her, so she stopped trying to get help.

It wasn’t until she turned 40 and she was fainting regularly at work, and was in and out of the hospital with malnutrition, that Louise tried, once again, to get psychological help. For the first time, a psychiatrist connected Louise’s longstanding social difficulties with her rituals around eating, and brought up a possibility that no one had never mentioned: autism. She was diagnosed with autism shortly thereafter.

“The diagnosis has helped me to understand why I struggle so much with life,” Louise said in an email interview, her preferred form of communication. It also helped her understand her eating disorder, which functioned not as a way to lose weight but rather to feel in control of her anxiety and the world in general. In fact, if it were possible to under-eat and over-exercise without losing weight, she says, she would do it. The only thing Louise seemed to have in common with others who have anorexia was near-stratospheric levels of anxiety.

On the surface, autism and anorexia couldn’t seem more different. People with autism are supposedly not attuned to the emotions of others, whereas people with anorexia are commonly thought of as oversensitive young girls hell-bent on fulfilling cultural ideals of thinness. But strip off the misconceptions, and the two conditions are far more similar than anyone believed, says Janet Treasure, a psychiatrist at King’s College London and director of the eating disorders program at Maudsley Hospital in London.

“I must admit I was skeptical at first when I read about the links,” Treasure says, “but when we were looking at various aspects of vulnerability to anorexia, such as thinking styles and emotional styles, they were actually very similar.”

Emerging research shows that people with either condition have difficulties understanding and interpreting social cues, and tend to fixate on tiny details that make it difficult to see the big picture. What’s more, both groups of people often crave rules, routines and rituals. Genetic studies also suggest overlaps between autism and anorexia.

Anorexia is not the only eating disorder connected to autism. Although the majority of research on eating disorders in autism has been focused on people who routinely eat too little food, some women with autism may also turn to food for comfort.

Some estimates hold that as much as 20 percent of people with enduring eating disorders have autism. Because girls with autism are frequently underdiagnosed, it’s often an eating disorder that first brings them to clinical attention — although men and boys with autism can and do develop eating disorders, most of the research and clinical attention has focused on girls and women. This gender bias has led some to refer to anorexia as ‘the female Asperger’s.’

Recognizing that someone has both autism and an eating disorder is only the first step. Few psychologists have expertise in helping people who have both conditions. Historically, eating disorder treatment mandates group therapy, but people with autism often have difficulties with social interactions. This treatment also requires that the individuals make dramatic changes in their eating routines, often in a short period of time. But some people with autism find it challenging to meet this demand because of their insistence on sameness. As a result, many people who have both autism and anorexia find it difficult to recover from their eating problems, and are less likely to recover than those who have anorexia alone. Louise and others like her are demonstrating that although the overlap between autism and anorexia is more common than anyone realized, there are still few effective treatments for this dual burden.

A familiar pattern:

To explain anorexia, psychologists often point fingers at modern Western culture and its emphasis on an excessively thin female body. But skeptics point out that if this were true, the prevalence of anorexia would be a lot higher than 1 in about 100 people, which is what it is today in the U.S. and other Western countries. Early genetic studies in the 1990s showed that anorexia is strongly heritable and tends to run in families. Others began to link anorexia to personality traits such as anxiety, perfectionism and a tendency to get stuck on certain thoughts or ideas.

In the early 2000s, psychologist Nancy Zucker, who runs the eating disorders program at Duke University in Durham, North Carolina, wanted to better understand some of the social and cognitive difficulties many of her patients experience, in order to provide better treatment.

 

As she began to search the literature, she came across some studies on autism and was struck by the similarities between the cognitive profiles of the two conditions. In particular, she noticed that people with anorexia struggle to recognize the impact of their behavior on others. “They can be very empathic and have a great desire to be accepted by other people, but they also seem a bit impervious to how their starvation affects others,” she says. In that sense, she says, people with anorexia seem a lot like those with autism.

Zucker wasn’t the first scientist to make this connection. The first study on the two conditions was a 1980 case report of a young girl with ‘atypical’ anorexia and autism. Three years later, Swedish psychologist Christopher Gillbergpublished a British Journal of Psychiatry paper that hypothesized a link betweenautism and anorexia. Over the next 20 years, the field languished. But in the mid-2000s, Treasure, Zucker and other scientists picked up on this trail.

In 2007, Zucker and her colleagues outlined the potential links between autism and anorexia in a 31-page review article that revealed just how similar the two conditions can be. People with anorexia often have difficulties making friends and sustaining social relationships even before the onset of their condition. Because high levels of social discomfort and withdrawal persist even after they begin eating regularly and return to a normal weight, these social difficulties are not likely to have been caused by anorexia or malnutrition. The review pointed to numerous studies of people with anorexia that documented rigid patterns of thinking and behavior, an insistence on sameness and difficulty with change — all of which are commonly seen in people with autism. Lastly, neurocognitive studies showed that people with anorexia have trouble with what Treasure calls “seeing the forest for the trees,” and also with mentally switching between different tasks. These traits, the researchers pointed out, are also seen in people with autism.

A year later, Treasure’s group in London demonstrated that women with anorexia score significantly higher on the Autism Spectrum Quotient, a self-report questionnaire that measures autism traits, than controls do. A 2014 study in Molecular Autism found that although only 4 percent of the 150 girls receiving outpatient treatment for anorexia at a London clinic had possible or probable autism spectrum disorder, one in four scored above the cutoff for autism on a screening questionnaire. This finding suggested that the girls had high levels of autism traits, even if they did not have a clinical diagnosis. A separate study in 2012, also by Treasure’s group, found that the starvation brought about by anorexia exacerbates the autism traits clinicians and researchers see. Even after recovery, they found, women with anorexia continue to struggle in social situations and with cognitive skills, although not as much as when they are acutely ill.

“They were also incredibly rigid and inflexible, and there’s the idea that, perhaps, that part of the autism syndrome might be a particular risk factor for developing a restrictive eating disorder,” says William Mandy, a psychologist at University College London who was involved in some of these studies.

Mandy’s background is in autism, not eating disorders, and he wanted to investigate these links more fully. In 2015 he conducted lengthy interviews with 10 women who have eating disorders whose charts had been flagged for social difficulties or possible autism. He found that all of them had issues with social interactions and food that long predated their eating disorder.

Also in 2015, a large Danish study found that close relatives of people with anorexia have significantly higher levels of autism and related diagnoses than would be expected by chance, suggesting that the two conditions share genetic and neurobiological links.

Food for thought:

Highly restrictive diets are common among people with autism. Louise says that as a toddler, she wouldn’t eat anything but boiled eggs and bread with warm milk. At home, that wasn’t a problem, but when she started primary school at age 4 and was required to eat the school’s hot lunch, she refused. “These meals were so revolting to me that I developed a phobia of eating them,” Louise says. She also found it stressful to eat in front of her classmates. “I would go the entire school day without food.”

Zoe, a 22-year-old being treated for autism and anorexia as an inpatient outside London, had a similarly limited roster of foods. “When my mum served spaghetti Bolognese, I had her put the pasta in one bowl and the sauce in a separate bowl,” she says. She still can’t bring herself to eat anything with a sauce. (Several women in this story are identified only by first name in order to protect their privacy.)

Like many girls on the spectrum, Zoe and Louise had both coped okay through primary school, where friendships and play were more structured and social situations relatively simple. To camouflage their differences, they practiced and copied the mannerisms and gestures of other girls to navigate tricky social interactions. But as they got older, social demands increased, making them feel alienated and anxious.

“The other girls just seemed to know how to talk to people. And I didn’t. But I found if I stopped eating or made myself sick, I could at least be thin like them,” Zoe says.

Mandy says girls like Zoe may find that controlling food and weight is a way to either fit in with their peers or to alleviate their overwhelming social anxiety. When Zoe started starving herself, it made the anxiety seem less important and helped it pass more quickly, two key aspects of what psychologists call emotion regulation.

“It’s a chain effect,” says Mandy. “You’ve got autistic traits that are being untreated and unsupported that, by adolescence, are beginning to impact upon the well-being of a girl. One possible response to that, especially in adolescence, is to then start controlling food intake and weight.”

When a brain is starving, it is so focused on finding food that other emotions can seem less important. Physiologically, starvation decreases serotonin levels in the brain. Anorexia researcher Walter Kaye at the University of California, San Diego hypothesizes that people vulnerable to anorexia have an excess of serotonin in their brains that leaves them feeling continually anxious and uncomfortable. Starvation may alleviate this state.

Even positive traits that girls with autism may have, such as a strong will and dogged determination, can be hijacked to fuel a burgeoning eating disorder. “If you’re someone who’s very determined, who sets your mind on something and doesn’t budge from your cause, that can play into it when dieting trips over into something more sinister,” Mandy says.

And some people use food in a different way — overindulging rather than starving themselves — to suit the same emotional needs. Elizabeth, a 44-year-old living near Chicago, gained more than 100 pounds as a teen and young adult. She over-ate to quell the anxiety fostered by her difficulties with social cues, both at school and with her abusive family. As she got older, her quest to lose the weight and improve her health sent her spiraling into anorexia. “It was all about routine and ritual. Either I ate all the time because that was just what I did, or I didn’t eat and I exercised all the time,” she says.

Autism “might be a particular risk factor for developing a restrictive eating disorder.” William Mandy, University College London

Road to recovery:

It’s only over the past 5 to 10 years that researchers and clinicians have begun to recognize the overlap between autism and anorexia, so no one has yet been able to say with any precision how many people are affected. Jennifer Wildes, who directs the University of Pittsburgh’s Center for Overcoming Problem Eating, says the number of people with both autism and anorexia is likely to be small.

Although many of the people she sees in her practice do have difficulties making friends and meeting new people, these problems generally improve with recovery, she says, leading her to believe that the difficulties are caused by anorexia rather than autism. Wildes has seen thousands of people over the years, and says only a handful also had autism. “I really don’t think that having autism and anorexia is really all that common,” she says.

Zucker and Mandy also say the number of people with anorexia and diagnosed with autism is relatively small — somewhere between 5 and 10 percent of those who have anorexia. However, they point out, even in the absence of diagnoses, the level of autism traits, such as difficulty making friends and interpreting social cues, in people with anorexia is high — enough to affect a person’s chances of recovery.

In any case, little is known about how to treat the subgroup of people who have both conditions. Louise found that many of the psychologists she saw became frustrated and angry with her anxiety-induced meltdowns and inability to change. Believing herself defective and unable to make progress with her eating and exercise, she stopped treatment. It wasn’t until she found the psychiatrist who didn’t pigeonhole her into what’s known about anorexia that she was able to start the long process of breaking free from self-starvation.

Taking into account the distinct needs and characteristics of people with autism is key, says Craig Johnson, clinical director of the Eating Recovery Center in Denver. At their inpatient and residential facilities, for example, psychologists often protect children and adolescents with autism or other developmental difficulties by separating them from older, more chronically ill patients because their emotional and social maturity may lag behind their intellectual ability and age, Johnson says. The clinicians also rely less on group therapy for these children, emphasizing individual therapy instead.

“We always had this subset of patients who didn’t do very well in group therapy, and our response was, ‘Well, let’s put them in more groups,’” he says. “It just alienated them even more; now we know better.” Providing a small range of food choices, as well as clarifying rules and expectations, also tends to help people with autism and eating disorders recover successfully, he says.

When the treatment doesn’t account for the presence of autism, it can potentially be harmful. For example, a genderqueer 26-year-old from Atlanta who goes by the name Rabbit was hospitalized in 2013 for an eating disorder. When at home, the physical repetition of fidgeting with keychains, hand-flapping or doing sit-ups had helped to slow down Rabbit’s thoughts and ease anxiety; self-induced vomiting also had given Rabbit an ‘empty’ feeling, devoid of emotion. Rabbit knew that the vomiting, along with exercising excessively and not eating, was harmful, but that didn’t make it easier to stop. The bathroom doors at the hospital were locked, and the hospital staff confiscated Rabbit’s beads and other sensory stimulation toys, leaving no good way for Rabbit to cope with strong emotions. Instead of providing empathy and support, they treated Rabbit as defective or naughty, which only amplified Rabbit’s fear and frustration. “The only way I could find to cope was to run over my foot repeatedly with my wheelchair until I did quite a bit of damage,” Rabbit says.

New insight:

How well someone recovers can vary with age. Adolescents who have both autism and anorexia are just as likely to recover as those with anorexia alone, according to a 2015 Swedish study, although they are more likely to struggle with ongoing psychiatric difficulties.  Conversely, adults with autism and anorexia are significantly less likely to recover — perhaps, as Treasure points out, because their anorexic behaviors have become so ingrained.

Still, even if the information comes later in life, it can be valuable. Holly, 41, was diagnosed with autism roughly two years ago after a lifelong struggle with anorexia. Like Louise and Zoe, the Illinois-based mother of two was fussy about food as a child and, as a result, markedly underweight. As a child, she found that skipped meals brought her a sense of calm and control.

“It wasn’t until I got to middle school or high school that I had the cognitive development to understand that I could bring this state on deliberately,” Holly says. It was as a teenager that she began regularly skipping meals.

When a friend read a book by Temple Grandin, the well-known scientist with autism, she recognized similarities between Holly and Grandin. So Holly began to investigate, and her discovery that she, too, had autism changed her life. She had spent the past several years in therapy gaining and losing the same few pounds and never really making progress. After her diagnosis, she and her therapist worked together to help Holly tackle her eating disorder using a new approach. Instead of focusing on increasing the variety of foods she ate, they agreed to have her increase the amount of the food she did eat. They also reviewed their plan, point by point, at the beginning and end of each session. As a result, Holly began to gain weight and, just as importantly, not lose it later.

It wasn’t an entirely positive experience. Being labeled with autism left Holly with a profound sense of grief; she says it felt as though her lifelong efforts to be “normal” had failed. She is also angry that eating disorders are viewed as a quest for thinness rather than potential signs of deeper issues around food and social interactions. “Everyone just wrote off my quirks as ‘Holly being Holly,’ and I think all those years of starving myself have really changed my brain,” she says.

Still, the knowledge had an impact that went beyond her own life. As she went through the autism assessment, she recognized many traits in her then-10-year-old son. He, too, was later diagnosed with autism. Around this time, he also developed many of the habits that Holly had had as a child, such as picking at his food and eating only a few bites before declaring he was full. As a result, his previously robust frame shrank to skin and bone.

“I had to use what I had learned to help him learn to eat regularly even if he didn’t feel hungry or got full. I taught him how to read labels to make sure what he was picking had enough calories. It took a year, but now he’s back to growing as he should be,” Holly says. “No one ever did this for me.”

For that, and for finally having the tools to understand herself, she is grateful. “Without that diagnosis, I wouldn’t be where I am today,” she says.

Louise, too, is ultimately grateful for her diagnosis because it proved that she wasn’t defective, just different. It also helped her understand why her eating and exercise rituals were so hard to break. Instead of completely eliminating these routines, she worked to develop new ones that would enable her to reach a healthy weight, which she did last year for the first time in 40 years. Life remains difficult for Louise, due in large part to her autism and severe anxiety. But the eating disorder she once had, at least, is no longer part of the problem.

 
Thursday, 18 February 2016 11:10

Karen Askham

Having worked with parents and carers of children and young people with Special Educational Needs and Disabilities (SEND) since 2003, I have extensive and in-depth knowledge of how the SEND system works and how services operate.  With an excellent reputation of being a hands-on, local advocate of Children’s and Carers Rights I have a track record of going the extra mile to get the best results for families.

For 10 years I was involved with a Parent Carer Forum, developing the organisation and supporting a management committee of parents and carers to make it a success.  I managed many projects and enjoyed watching our families and the organisation grow up!

I then developed the Yorkshire and Humberside Family Support Service for the national, award-winning charity Caudwell Children.  I helped families in crisis to get the support they deserve through services, community groups and my team of hand-picked Volunteer Supporters who were from a wide range of backgrounds. 

I then went on to be an Independent Supporter, helping families to understand the changes in the statementing process and providing hands-on support to get the best possible Education, Health and Care (EHC) plan for their child.  Having been involved with the pilot for this new system I was keen to help families from the outset.

I am also involved with several other organisations which are dedicated to supporting and informing families of disabled children and young people – Bringing Us Together, Visits Unlimited and Justice Together – a new project from Bringing us Together that seeks to make information and support available to families whose children and young people have been detained or are at risk of being detained against their wishes.

I am part of national network of parent activists and professionals and if I don’t know the answer to something, or the right way to help someone, I can usually find someone who does.

Wednesday, 17 February 2016 13:28

-George Julien/Mazars/Blog

Psychic families and prophetic consequences #JusticeforLB

This weekend I watched an old film Silent Minority recorded in 1981 (thanks Saskia and Sara for the tip off).

 

It was filmed 25 35 years ago (thanks for those who noticed it’s even longer than I thought, by ten years), and yet some of the voiceover could as readily apply to what we’ve seen and heard about the failings at #SouthernHealth in the last few years. People left in beds or on beanbags because no-one had the ‘wit or wherewithal’ to imagine a future for them, to support them, to see them (as fully human). Lives lived and arranged around staffing tea breaks (motivational tea party anyone). Incarcerated people doing everything they can to subvert the system (or just trying to communicate – next step PBS bootcamp).

In many ways I think we’ve got nowhere in the intervening 25 years, and that is our responsibility, each and every one of us who make up our crappy society with ideals of containment, paths of least resistance and a discomfort of the sight, sound, smell of difference.

So we pathologise, and label, and snub out any hope or optimism or belief. We create a hell on earth with no imagined future and a sort of living purgatory for anyone who is different and those who love them.

In the last six months, since Southern Health had the Mazars draft, a number of families have complained that they were not listened to. While Southern Health have been orchestrating their PR operation to get some good press and apparently transform their substandard care death reporting for people with learning disabilities or mental illness, here’s what families with the most recent dealings with them, had to say:

  ‘I think lessons need to be learned all around, the communication has been terrible for us to phone nine times about our concerns, I can see there is a lot of people talking in circles and not facing up to the truth that there was not a crisis care package for her and that was one of the reasons for her not being here today’ Doris Cranmer’s family

  ‘Southern Health failed to take into account the very strong feelings of the family that Emma was a suicide risk, particularly as the Easter Sunday was a significant anniversary for her. as it was the 20 year anniversary of her daughter’s death and She had shown signs of severe mental stress and had discussed feelings of suicide with them. Southern Health ignored the family’s concerns and released Emma home with the guarantee of a phone call at seven o’clock that evening. The phone call never materialised and Emma tried to commit suicide four hours later’ Emma Connell’s father, Peter Stuart

This builds on previous incidents too, in 2011 Victoria Nye’s father desperately pleaded with Southern Health:

  ‘Her death sparked a top-level inquiry by health bosses into care given to Victoria and the decision to allow her to return home, despite the desperate pleas of her dad, Graham, who warned she would be dead within hours of her release’

Teresa Colvin died in 2013, and despite the lessons apparently learned by Southern Health by then:

  ‘The hearing heard that during her stay staff failed to tell her husband about the severity of two incidences where she escaped the unit and the coroner accepted that Mr Colvin should have been fully informed…. Mr Colvin insists that “the signs were clearly there” to indicate that she was at real risk of harming herself and believes that Southern Health NHS Trust, which ran the service that has since been closed, “fatally let her down”… I have heard nothing that gives me any doubt that the risk assessment and the quality of management of my wife’s care over the weekend of her admission was inadequate and directly led to her fatality’

The following year, 2014, Jason Kelly died while under the ‘care’ of Southern Health:

  ‘Even on the morning of his death Mrs Kelly says she pleaded to have her son sectioned under the Mental Health Act’

Like LB, Eddie Pearse was only 18 when he died. He too had crossed the magic invisible threshold into adult [non] services, that within Southern Health seemingly equates to completely ignoring any family concern or involvement:

  ‘Once he turned 18 his care was transferred to Southern Health’s adult team meaning his dad was no longer informed of the issues affecting his son and prevented him from taking part in sessions… as soon as they hit 18 they are considered adults, there is no transition… there should have also been a much better handover between the youth and adult mental health service. The paperwork was passed across but there was no meeting’

These parents and family members were all psychic it seems, prophesying what would come to pass and completely sidelined and ignored by staff and systems at Southern Health. Sara predicted what would happen to LB, her greatest fear realised 44 days after she wrote it:

  ‘The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe.  I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t’

Not only did Sara predict it, she did everything in her gift to make sure Southern Health staff knew and could care for LB. Sara spoke to staff, she called them, she emailed them, she wrote a blog about it (and we now know her blog was being monitored for reputational risk purposes) and still it was no use.

Despite all of the (false) reassurances about learning lessons, families are still ignored, patients are still just collateral, an inconvenience.  The worse thing is that this plays out in broad daylight, not a sniff of accountability, nothing. 25 35Geeorge Julien/Mazars/Blog years since Silent Minority, our most vulnerable are as vulnerable as they ever were.

 

About

Wednesday, 17 February 2016 13:03

Mazars report/ scandal says Rob Greig

‘A learning disability scandal is being swept under the carpet’

Rob Greig, former Department of Health director for learning disabilities, says the silence on a damning review of Southern Health is worrying

 

By Rob Greig

The Justice for LB campaign is widely, and rightly, viewed as one of the most successful examples of the mobilisation of public opinion to challenge service failure.

For those not familiar with it, Connor Sparrowhawk, a young man with learning disabilities, died while under the care of Southern Health NHS Foundation Trust in July 2013. Given the trust’s failure to accept responsibility, Connor’s family and friends launched the Justice for LB campaign (Laughing Boy, ‘LB’, was Connor’s nickname).

The trust initially said Connor died of ‘natural causes’ but an independent investigation found his death could have been prevented. Last year, an inquest jury found that neglect contributed to his death.

‘Failure of leadership’

Before Christmas, there was a sense that this campaign was leading to real change. Most notably, the findings were revealed from an NHS England-commissioned report (the Mazars review) into Southern Health’s handling of patient deaths.

The report described how the trust had, among other things, failed to investigate hundreds of unexpected deaths of people with learning disabilities or mental health conditions. It blamed a “failure of leadership” and warned investigators had “little confidence” the trust fully recognised the need to improve.

Strong words were said by people in authority. Health secretary Jeremy Hunt was “profoundly shocked” by the findings. Simon Stevens, NHS England’s chief executive, spoke of the health service being at a “cultural turning point” at which it must change the way it responds to families.

Lack of changes

However, since Christmas, far less has been said. It is also hard to identify any significant change to emerge from the litany of criticism that followed the Mazars report. What has happened to permit the silence that now surrounds this scandal?

Real change should be identifiable in three main places:

1) National policy: The reports and inquest provide learning about diverse issues. The rights of families. Staff training. How NHS trusts are allowed to merge and how their services are regulated. A new government ‘learning disability action plan’ is being developed. The version I’ve seen addresses none of the issues arising from Justice for LB.

2) General NHS practice and behaviour: One of the most disturbing statements in this saga came from Southern Health’s chief executive. She said that what was happening at Southern was no different to other NHS trusts.

A joint NHS England/CQC response to the Mazars review committed to action to find out if this is the case, but that involves a fair bit of shutting the stable door after the horse has bolted.

Improving investigation of deaths is good – but the key issue is stopping those deaths in the first place. That requires action around factors such as recognition of rights, family engagement, staff skills and applying real person-centred practice and leadership. The national action around this would be politely described as hard to see.

3) Southern Health: All the indications from Southern Health suggest they are still more concerned with denying responsibility than instigating fundamental change. The initial failure of the trust has been compounded by a persistent failure to accept responsibility. Accepting input from Monitor on how to improve death recording is not a cultural and quality improvement plan.

A fresh start is needed

Many observers remain baffled as to how the trust and NHS England cannot see the need for a fresh start to create that culture.

I’ve never been one to pillory individuals, but it took Connor’s young brother standing up in public to get Ms Percy to apologise directly to the family.

Effective leaders can see when they get things wrong – without needing a series of external reports to speak of ‘failure of leadership’. Out of self-respect, if nothing else, how can the chief executive and other leaders in the trust not accept their responsibility and recognise the need to move on?

Compare and contrast this with what happened after the Mid Staffordshire hospital scandal. There, neglect was considered to have caused fewer deaths than went uninvestigated in Southern. Yet senior people lost their jobs, staff were struck off their professional registers, families received compensation, a public inquiry was held and the government placed new, explicit expectations on the NHS, for example around staffing levels.

You cannot help but conclude that government is ascribing a different value to the lives of people with learning disabilities and older people with mental health problems (whose unexpected deaths also commonly went without investigation).

Why the lack of action?

In a recent blog, I described how, during my time as the government’s national director for learning disabilities, a very senior NHS manager said his non-delivery on institutional closure was acceptable because “no-one loses their job for not delivering on the learning disability agenda”. It is time to tell another anecdote.

Over 10 years ago, when the abuse of people with learning disabilities within NHS services in Cornwall was about to be exposed, I argued within the Department of Health (DH) for a robust action plan in response – if only because there would be a strong public demand for one.

A very senior DH official told me this wasn’t needed because “DH gets attacked in the media about the NHS every week. We take it on the chin, apologise for a couple of weeks, and then move on while the media forgets about it because it is attacking us about something else”.

Fortunately, he lost that argument and a task force was sent in to sort things out in Cornwall. However, that mentality remains in key places.

One of the strengths of the Justice for LB campaign is that the family, their friends and allies are not going to forget and move on. There is a need for government, NHS England and Southern Health to show that they have heard and acted on the need for real and discernible consequences and change – and demonstrate that Connor’s death, and those of others, has made a difference for other people with learning disabilities and their families.

Rob Greig is chief executive of the National Development Team for Inclusion. He was the Department of Health’s director for learning disabilities from 2001 to 2008.

dla  Guide to claiming DLA for children with disabilities - 

This guide is for anyone, parent or professional, who is considering making a claim for Disability Living Allowance (DLA), on behalf of a child under 16 years of age who has a neurological or   neurodevelopmental condition. This includes conditions like autistic spectrum conditions, ADHD, cerebral palsy, Down’s syndrome, epilepsy, learning difficulties, global developmental delay and acquired brain injuries among others.
Covering such a wide range of conditions means that, inevitably not everything in the guide will be applicable to all children. The intention is that you can use whatever is most appropriate and expand on it with your own examples.

jayne knightWe are very proud to announce that You Know's founder Jayne Knight has been shortlisted for Northern Power Women's Person with a Purpose. The winner is to be chosen at an award ceremenoy on 3rd March at Hilton Deansgate, Manchester and, needless to say, we are all rooting for Jayne to win!

From the Northern Power Women's website: "Northern Power Women is celebrating and showcasing role models who take positive steps towards transforming organisation culture in the north of England to benefit the talent of the future.

These are the only awards that celebrate the amazing women and men working towards creating gender balance in organisations and passionately supporting gender equality in the north.

Whether they’re working in the north or from the north, these awards will recognise the people leading the step change we need in business and raise their profile as role models to inspire current and future leaders. "

Go on Jayne - we're all behind you!

 

Disabled children: a legal handbook is an authoritative yet accessible guide to the legal rights of disabled children and their families in England and Wales. The authors expertly navigate the many, often overlapping, sources of law, explaining the difference between what public bodies must do to support disabled children and that which they may do.

The handbook aims to empower disabled children and their families through a greater understanding of their rights and entitlements. It is essential reading for the families of disabled children, their advocates and lawyers, voluntary and statutory sector advisers, commissioners, managers and lawyers working for public authorities, education, social and health care professionals, students and academics.

Each chapter has been adapted into a PDF for you to download for free.

Click here to view download links for each chapter (opens in new window)

I've worked with many people in different end-of-life and palliative care settings, from 10-year-old children to a woman who lived well into her 98th year. My aim as an end-of-life doula is to create an environment where the sorts of questions that no one has felt able to ask are broached and discussed.

No matter what someone is asking, the most important thing is that they are heard. That their pain and anguish, their hopes and dreams, their worries and their fears are all given a voice. When a person at the end of their life is talking, the greatest gift we can give them is to listen. Here are the most common questions I'm asked, and how I respond.

Read the full story with all 11 questions by Anna Lyons on the NetDoctor website (opens in new window)

Terminally ill patients are to be encouraged by an NHS Trust to write their own 'end-of-life plan' instructing doctors, nurses and family about their wishes for their final months, days and hours.

The document is based on birth plans that pregnant women commonly draw up with their midwives, and takes the form of a single-page grid detailing the personal wishes of the patient about every aspect of their care.

Subsections include: 'What will be important to me...', 'How to support me and those I love...', 'What MUST happen...', and 'What MUST NOT happen...' when the patient has months, weeks, and then just days to live, at the time of their death, and then afterwards.

Read the full story on the Daily Mail website (opens in new window)