The author of the following article is a freelance journalist, writer and campaigner. It is the story of how a local authority systematically destroyed a very disabled child's carefully managed care by dedicated family and trained carers. While Elly Chapple, Ella's mother, eventually succeeded in reversing the disastrous intervention, the damage done can not be undone. You can find the story and other work by the author on her website, georgejulian.co.uk.
Ella's story is sadly far from unique. PAR is aware of many such stories of parents of disabled children in Scotland who have suffered equally devastating interventions by local authorities who remain unashamedly unaccountable for the damage they cause. A complaint about one such case which was pursued by PAR was upheld in full by the SPSO and was considered so serious that a report about the failings of Moray Council was placed before the Scottish Parliament. (https://www.spso.org.uk/investigation-reports/2020/august/the-moray-council) However,we continue to try to help in very similar cases where disable children are forced to experience terrifying separations from their parents and families, and experience neglect and harm as a result. We cannot fight every one of them - but please help PAR by promoting our work, and by publicising stories like Ella's.
"In June 2018, which feels like a lifetime ago but is only actually 6.5 years, I met Elly Chapple for the first time. It was at Festable at National Star College, we’d been connected online for a while, but on that day I heard her talk about her daughter Ella, and the lessons she had taught them as a family. Elly was a force, one of those relentlessly positive and kind humans, a bundle of energy and wit and togetherness.
Ella was 11 at the time. She is DeafBlind, has learning disabilities and a very rare syndrome called WAGR. Elly talked about how Ella had lost her personhood and her (already limited) sight after she was restrained at school. She talked about how “slowly, slowly, we glued her back together”. She also pointed out how much she wanted to be positive about Ella, and all of her achievements and the lessons she was teaching, bringing people together and focusing on the human.
The following year, Elly recorded a brilliant Ted Talk called The Shoeness of a Shoe. Before reading any further you might like to watch it.
I’ve remained in touch with Elly since that sunny day at Festable. Ella has recently turned 18. She is a remarkable young woman, with the most amazing curls, who has continued to find her way in the world and is at the centre of her family.
Ella’s Human Rights Claim
Last month, Ella was at the centre of an Article 8 European Court of Human Rights Claim that was settled out of court. The other party were Northumberland County Council who were responsible for her care and education. The court order found the council had unlawfully issued care proceedings, that required Elly and Ella’s siblings to leave the family home, whilst care proceedings were ongoing.
It also records changes were made to Ella’s bespoke care and education package, whilst the care proceedings were ongoing, having a negative impact on her, and causing her significant distress.
I applied to the court to access the Particulars of Claim and wish to share what this case was about.
In August 2017, back when Ella was 11, the SEND Tribunal ordered Northumberland County Council to provide her with a bespoke package of provision during her waking hours, to help her manage her daily routines. This waking day curriculum was provided to Ella between 7am and 7pm, year round, and she was supported 2-1 during those hours. Ella was entitled to, and received support from, a team of 11 intervenors who were skilled in supporting children with multisensory impairment, who at a minimum had Level 1 training in BSL.
This approach met Ella’s needs. A note of the February 2019 EHCP annual review, recorded her parents Elly and James, reporting Ella had “made significant progress” following this approach and they wished for it to continue long term “to support Ella’s complex care needs being met within the family home environment”.
This arrangement continued until March 2020 when Ella was admitted to hospital with life threatening pneumonia just as the pandemic broke. Ella had been unwell for about a week when she started struggling to breathe, following the advice of a 999 call handler, Ella’s parents took her to hospital. This was the first hospital admission due to respiratory difficulties Ella had in over a decade.
Elly and James stayed by Ella’s bedside throughout what turned into a 6 week hospital stay, travelling every day and night into hospital from home, while the whole country was on lockdown due to the pandemic.
Two days after Ella was admitted to hospital, on 20 March 2020, a Social Worker from Northumberland County Council and a Paediatrician from the hospital held a strategy discussion, which started a 4.5 year nightmare for Ella and her family.
“The Defendant has stated that following the Claimant’s admission to hospital, they received “a number of reports from staff” that highlighted alleged concerning behaviour by Mrs Chapple” Particulars of Claim
What followed was months of scrutiny of Elly, with a devastating impact on Ella and the whole family.
Whilst Ella was in hospital, fighting for her life intubated in PICU, there was an Initial Child Protection Conference held that her parents attended. The main concern appeared to be that Ella’s parents had not taken her to hospital soon enough, even though it was recorded they had sought advice from their GPs on more than one occasion on the day and had sought advice from 999 and followed all advice they were given.
The meeting minutes record the Chair was clear Ella’s parents “had fulfilled their parental duties” but the meeting had to consider “whether there was a delay in the Claimant receiving emergency treatment and whether this was neglectful”.
This meeting, held on 14 April 2020, concluded with most attendees deciding Ella should remain on a Child in Need Plan. Ella was not placed on a Child Protection Plan, and it was agreed there was no requirement for care proceedings to be initiated.
The following day the person responsible for coordinating Ella’s support team, himself subject to employment disciplinary proceedings in relation to alleged safeguarding concerns and who had handed his notice in a week after Ella was admitted to hospital, contacted Children’s Services to raise concerns he said he felt unable to raise in the meeting.
“These included concerns that Elly Chapple was overfeeding and over-medicating the Claimant and also that Elly Chapple had bullied staff and mismanaged the hours provided under the Claimant’s care package” Particulars of Claim.
It appears that these claims were simply accepted, there was no proper investigation or scrutiny of them by the Social Worker or any Local Authority staff.
On 20 April 2020, the Sensory Support Team from Northumberland Council submitted a retrospective report, written by three staff members including two who had attended the meeting the week before. It concluded Ella should remain on a Child in Need Plan, “with robust changes”.
The following day, on 21 April 2020, a strategy meeting took place.
“At which 18 professionals recommended care proceedings were issued with a view to removing the Claimant from the family home” Particulars of Claim
The minutes note that a number of people who 7 days earlier had been in favour of a Child in Need Plan, had now changed their minds. The views of the intervenors who worked daily with Ella “were not meaningfully canvassed or represented in the strategy meeting”.
“It was also noted that the Local Authority “would not continue to fund [the] care package as insurance will not cover concerns for Ella and her interventors” Particulars of Claim
On 28 April 2020 an emergency health care plan was put in place for the first time. The next day, whilst Elly was waiting for Ella to be discharged from the hospital, the Social Worker contacted her by telephone.
“To inform her that the Local Authority would be issuing care proceedings and that she should not return home other than to collect a bag of belongings. Mrs Chapple left the family home on this day” Particulars of Claim
On the day Ella left hospital to return home, 29 April 2020, having just survived life threatening pneumonia, Elly had to leave home with Ella’s siblings. The same day the Social Worker sent an Immediate Issue letter to Ella’s parents stating Northumberland County Council:
“Is extremely worried about your care of Ella. We told you about some of these concerns during the Initial Child Protection Conference held on 14 April 2020, and will share further information about the current concerns in due course. We have tried to work with you to help you improve your care of Ella but unfortunately, things have not changed”.
Care proceedings were issued by the council the following day.
Northumberland County Council were unable to identify any work that had been attempted in the short space of time between the meeting on 14 April, and the decision to issue care proceedings taken on 29 April. Throughout this time Ella remained in hospital.
The Social Worker met with Elly to discuss proceedings and the meeting was joined by the Human Resources Manager of Ella’s care package. She explained to the Social Worker serious concerns had been raised about the behaviour of the person who had been coordinating Ella’s support team (who had contacted the council the day after the decision was made not to issue care proceedings). The Social Worker said she would contact the HR Manager for the concerns to be shared with her, and to arrange to speak with the intervenor team working with Ella. Neither of these things happened.
On 4 May 2020, Ella was made subject to an Interim Care Order.
On 15 May 2020 the Family Court agreed contact that allowed Elly to return and visit Ella for 2 hours a day. This was increased to 5 hours supervised contact from 22 May 2020.
By the time the local authority transferred Ella’s staff to their own employment, on 1 June 2020, well over half of her original team of intervenors had resigned.
“By this date, the remaining team compromised only five, or possibly four, according to contemporaneous documentation, intervenor staff, from a team of 11 at the time the care proceedings were initiated” Particulars of Claim
Ella’s intervenors were also told to call themselves Residential Support Workers from this point onwards.
“On 26 June 2020, the Local Authority secured waking night supervising staff, meaning Mrs Chapple was able to return home on a full-time basis. This was the end of a two month period where Mrs Chapple had not been living in the family home” Particulars of Claim
The court paperwork details numerous concerns being raised about the impact of the changes on Ella. It makes for a devastating read.
Ella’s father, James, who had been allowed to remain at the family home with Ella, reported concerns that the Local Authority staff who had been brought in to oversee Ella’s care were not equipped or trained to communicate with her.
He raised concerns that Ella was not sleeping, noting she had 6 bad nights out of 7, which was extremely unusual for her.
In the weeks that followed Ella was tearful and upset, signing the word “home” and displaying self-injurious behaviour due to her distress including head banging, scratching and biting.
When Elly returned to the family home Ella communicated her concerns and confusion about what had happened to her mum.
“The Claimant continued to talk about “home now” and would grab Elly’s wedding ring, saying “married”. The Claimant continues to date to talk about her parents being “married”. This is not something she had spoken about prior” Particulars of Claim
An Educational Psychologist preparing a report on 2 July 2020 for the annual review of Ella’s EHCP stated:
“Ella is also aware when people are talking about her rather than to her and unsurprisingly dislikes this”.
She also noted the disruption to Ella’s life in the recent months, and the lack of consistency of implementation of support for Ella or monitoring of her progress.
The court documents detail numerous further changes for Ella. A staff member brought in to support Ella by the Local Authority raised concerns with their manager, including the following:
“I am here to find the best solution for EC and give her a good quality of life and the whole emphasis has shifted from that to discrediting everything the Chapples do and say” Particulars of Claim
The staff member warned if changes didn’t happen, all Ella’s original staff would be lost, which would be devasting for her.
By the end of July 2020, only 2 of Ella’s original intervenor team remained in post.
The court documents detail instances of Ella communicating her distress through headbanging and other self-injurious behaviour. These instances were numerous and increasing in severity throughout the time period. From reading the court documents it appears clear Ella was distressed by events, and clearly communicating that distress through her behaviour.
On 5 August, the manager from the Local Authority expressed concern that Ella’s grandfather had taken a photograph of her, with injuries from headbanging in distress.
“…the Claimaint’s maternal grandfather had taken a picture of the Claimant’s bruising. This was recorded by the Defendant as “undermining staff”.Mr Chapple attended a supervised visit with the Claimant on 5 August 2020 and noted she had severe bruising around both her eye sockets” Particulars of Claim
On 8 August 2020, the local authority made an application to move Ella from her family home, into a residential placement. When taken to visit the placement for a second time on 16 August Ella cried and communicated ‘mummy’.
“On 25 August 2020, the Court ordered that it expected “the LA to address practical arrangements for Ella’s care immediately and to explore the options in order to manage the placement at home” Particulars of Claim
On 4 September 2020, the annual review of Ella’s EHCP took place. Four days later the MSI Teacher who had been working with Ella for a number of years since she lost her vision, emailed the Local Authority and Elly’s education solicitor, raising safeguarding concerns relating to comments the Local Authority staff member now managing Ella’s care, had made in the review.
She was concerned the staff member had suggested Ella was easily able to adapt to new situations, had no problem using verbal communication and was ready to manage in a class of children with disabilities. The MSI teacher detailed her concerns:
“In fact EC’s current package of care flouts the norms for supporting learners with MSI/deafblindness and is not based upon any assessment of need of EC as far as I am aware.In summary, the implications of this are likely to impact on the social and emotional wellbeing of EC and undo several years of rehabilitation and developmental work that I have been commissioned to do by and alongside the local authority” Particulars of Claim
The Social Worker asked the MSI Teacher to put her concerns in writing. Once she had done so, the Particulars of Claim state the Local Authority expressed concern about “collusion” between the MSI Teacher and Ella’s parents.
A report compiled by a Court Appointed Expert in Deafblindness referred to in the Particulars of Claim, also contains some gravely concerning information, in terms of the impact on Ella. It highlights support provided to her had not been consistent and many of the communication approaches used previously with Ella were no longer being used.
A staff member brought in to assist in providing care to Ella had devised a plan for dealing with Ella’s behaviour, without the involvement of Children and Young People’s Service or Ella’s parents, without any previous experience of supporting DeafBlind children, and despite only just meeting Ella. This ‘Physical Intervention Protocol’, introduced on 12 August 2020, “advocated that restraint, nose pinching and lip pushing should all be used on the Claimant” Particulars of Claim.
The Court Appointed Expert also observed the newly appointed manager’s approach was also distressing Ella, and causing her behaviour to escalate:
“…approach of ignoring the Claimant when she displayed challenging behaviour “does not work, and in fact only causes the behaviour to escalate”” Particulars of Claim
This manager claimed Ella’s behaviour deteriorated when Elly was around. The Court Appointed Expert noted she did not observe any such change.
On 30 September 2020 an internal case discussion led to the Local Authority agreeing they would no longer seek for Ella to be removed, as the legal threshold for doing so was not met.
On 27 October 2020 an order was issued to discharge the Interim Care Order.
Ella’s parents appealed to the SEND Tribunal, securing an order in their favour on a number of issues in dispute with Northumberland County Council.
“Although the Defendant at times in the appeal appeared to be arguing that the Claimant should attend a residential special school, by the date of the hearing the Defendant agreed that a bespoke specialist package at home was required to meet the Claimant’s needs.On 11 December 2020, Mrs Chapple returned to the family home permanently” Particulars of Claim
In April 2021 Ella issued the claim about the infringement of her human rights, with civil proceedings served in May 2022. The Particulars of Claim details the traumatic impact on Ella of the approach taken.
It references her being separated from her mother, when she had not previously been apart from her for more than 7 days in 13 years.
It highlights all but one of her trained intervenors have left.
The combination of these two changes was devastating on Ella. As referenced by the Court Expert above, the approach to ignoring Ella’s distress, only sought to escalate it further.
The Particulars of Claim states the replacement carers were unable to communicate to Ella why her mother and siblings were absent, or why the other changes had been made.
It also details the replacement carers ignored Ella’s behaviour when distressed and that they adopted “inappropriate approaches when caring for the Claimant such as referring to her as a “stroppy teenager” and treating her as though she was “naughty””.
Commentary
I cannot imagine just how distressing this must have been, and still be for Ella. I can only guess that she must have felt that her family had abandoned her and that she was somehow being punished by those who were meant to be supporting her. She can’t see what is going on, she can’t hear what is going on, all her routines are altered and the number of people she can communicate with is drastically reduced. She would have been physically depleted after invasive treatment at hospital and still recovering from pneumonia, a condition that takes months to recuperate from, even in the best of circumstances. Her whole world must have felt like it was closing in on her, and she has no idea why.
The claim details Ella will still repeatedly ask for home on a daily basis (despite living at home), she will frequently ask when she will see family members and calls their names when they are not with her. Ella will still shout “Ella, behave, no” at times to this day when she is distressed, and she repeatedly signs that she is worried.
Outcome of the case
On 11 November, we heard in September 2024 the parties reached an agreement that Ella’s human rights were breached by Northumberland County Council unlawfully issuing care proceedings, and the changes made to Ella’s care package, as well as the council’s requirement that Ella’s mother and siblings leave the family home while care proceedings were ongoing, had a detrimental effect on Ella and caused her significant distress. A damages settlement of £50,000 was agreed.
Commentary
I’m left wondering how a council, who is concerned enough to initiate child protection proceedings, can so gravely lose sight of the child at the centre of them. The unlawful actions of Northumberland County Council, not only breached Ella’s right to a family life, but it also caused her considerable harm, which is highly likely to shape her future.
How can it be that a girl who was so loved by her family, and very much at the centre of family life, could be jettisoned from them seemingly on the word of a single member of staff, themselves under investigation for alleged safeguarding failings, which was accepted without question?
How could it be that the Social Worker’s focus was so heavily upon Elly, who had herself given up work years earlier to support Ella full time. Why were the intervenors who worked with Ella never interviewed, and their opinions not sought? Instead over nine months a staff team that had been carefully built around Ella’s needs was dismantled, with life changing consequences for Ella.
Wider context from recent research
Unfortunately, we know what happened to Ella and her family is not unique.
In February 2021, the Chief Social Workers for Adults and Children in England published a report following small scale research in 4 Local Authorities between June and September 2019, relating to support provided to autistic young adults: A spectrum of opportunity: an exploratory study of social work practice with autistic young adults and their families.
The relevant finding from this report is that the line of sight is skewed so that child protection, and by inference judgement of parenting, is front and centre, so much so that some families may not seek help when they need it:
“Even where the sole reason for contact with children’s social care was because of the social care needs of an autistic child, there was a tendency to use the social work assessment as an opportunity to judge parenting capacity through a child protection lens rather than through a lens of social care need. This has long been a complaint of families caring for disabled children. The most common context for support in children’s social care is child protection, so even when that is not the necessary focus, it can influence broader practice approaches. Fear of being labelled a bad parent or worries about being blamed as failing as a parent, may limit families’ willingness to seek help”.
A few months later, in July 2021, the summer after Ella’s life was turned upside down, Luke Clements and Ana Aiello published a research report called Institutionalising parent carer blame.
Their research looked at the experiences of families with disabled children in their interactions with English Local Authority Children’s Services departments. They analysed the assessment protocols of 143 Local Authorities and conducted a survey of 92 parent carer-led support organisations in England.
Their findings, which resonated strongly with many families of disabled children, found that parent blame was not in the heads of families, but was built into the systems activated when parents sought support to enable their disabled children to live a good life.
“National and local social care policies in England create a default position for those assessing disabled children, that assumes parental failings. This approach locates the problems associated with a child’s impairment in the family”.
Their research found that the national guidance, Working Together to Safeguard Children (2018) was “not fit for purpose and arguably unlawful”. Its focus on safeguarding children from parental neglect and abuse, “fails to address the distinct assessment and support needs of disabled children for whom there is no evidence of neglect or abuse” and it also “contains no requirement that those assessing the needs of disabled children have any expertise or experience in a particular condition, so that the needs of the disabled child are accurately identified”.
In October 2021, Mr Justice Hayden issued a judgement in which he described parents of sick and disabled children being drawn into “high octane conflict with the raft of professionals who seek to support their child’s care”.
Mr Justice Hayden offered two possible explanations for why these scenarios of conflict between professionals and parents of profoundly sick or disabled children occurs:
“Many judges, over the years, have speculated why this scenario arises with such regularity. Sometimes, it may be a displacement of loss and accompanying anger which lands upon the medical and other professionals in the absence of any other target. Often, it may reflect a parent’s sense of powerlessness”.
He warned against treating parents of disabled children as difficult or obstructive, and sought to encourage the application of the law by situating parents’ experiences within the circumstances they find themselves.
The relevant legal framework is the Children Act 1989, Clause 31, 2:
A court may only make a care order or supervision order if it is satisfied –That the child concerned is suffering, or is likely to suffer, significant harm; andThat the harm, or likelihood of harm, is attributable toi. The care given to the child, or likely to be given to him if the order were not made, not being what it would be reasonable to expect a parent to give him; orii. The child’s being beyond parental control.
Mr Justice Hayden particularly focuses on the interpretation of reasonable, stating:
“It is important to emphasise that the provision “not being what it would be reasonable to expect a parent to give” is not to be regarded as an abstract or hypothetical test but must be evaluated by reference to the circumstances the parent is confronting i.e. what would it be reasonable to expect of a parent in these particular circumstances, recognising that in a challenging situation many of us may behave in a way which might not objectively be viewed as reasonable. The test is not to be construed in a vacuum nor applied judgementally by reference to some gold standard of parenting which few (if any) could achieve. On the contrary, it contemplates a range of behaviour, incorporating inevitable human frailty. The reasonableness of the care given requires to be evaluated strictly by reference to the particular circumstances and the individual child”.
It is hard to imagine how the care provided to Ella by her parents could be considered unreasonable, perhaps that is why the council settled out of court.
Just last month the Childrens and Families Truth Commission, which describes itself as “the first ever parent-led and human rights focused investigation of child protection in the UK” published its report evaluating children’s social care through the eyes of children and their families. It’s report Eroding the right to family life: Human rights violations in Britain’s child protection systems shared the findings from over 600 responses to two surveys of families’ and children’s experiences of children’s social care and support, including the extent to which contact with parents and carers was supported while children were in the care system.
“This report draws attention to several key areas where families’ human rights are being violated and their right to family life is regularly being denied.Those rights are contained in the Human Rights Act 1998 and the UN Convention on the Rights of the Child.The findings also suggest that there are serious and routine violations of the Children Act 1989, and its key principles. In particular local authorities’ duty to provide services to families in need and support them to stay together”.
Last month research was also published by West Midlands ADASS (Association of Directors of Adult Social Services) collected in an Autism and Parental Blame projectcommissioned by NHS England in the Midlands “in response to complaints from parents who felt their child’s autism had been missed or misdiagnosed due to professional bias or misunderstanding”.
Whilst Ella is not autistic, the project’s final report Blamed Instead of Helped: How parents of autistic children experience parental blame when they approach services for support appears to have much wider applicability.
“It highlights the need for more awareness, training, and collaboration amongst professionals and services to ensure that parents are treated with respect, empathy, and understanding … by addressing the issue of parental blame, we can create a more positive and supportive environment for autistic children, young people and their families” Project Report
The project found parents feel judged rather than listened to, dismissed and disbelieved by professionals.
“Blame from professionals manifests as accusations of poor parenting, disbelief in parents’ accounts and accusations of neglect or Fabricated and Induced Illness (FII)” Project Report
It also found that the impact of parental blame was long lasting and detrimental, including families experiencing post-traumatic stress disorder.
Ella’s parents’ perspective
I spoke with Elly after the settlement was agreed, to try and understand how she had found the whole experience. I think she’d agree she was nervous and somewhat reluctant to share.
“Part of me is changed. The fiery fearless woman I was is slightly damaged”
I completely understand why Elly would be terrified to speak out, given the way Ella and their family have been treated. The fear of repercussions isn’t an abstract one, it is situated in the trauma that has been inflicted upon them, and the fact that Ella will always need support from the Local Authority.
Elly described the experience as “9 months of utter hell”. She is reflective, balanced and fair. She describes how the whole experience changed her as a person.
“I find myself questioning why people did what they did. What I can’t understand is what makes people do these things, why they don’t believe families. What makes you follow a protocol that causes so much harm?What did I do that really upset them? I’ve done a lot of self-reflection. If I’m totally honest the system makes you into a really difficult, challenging, angry person at times. That’s not who you are, but you become this fighter, because you have to take it on all the time to stand up for your children’s needs.When you become that fighter, you inadvertently do hurt other human beings, I’m not easy to be in a meeting with. I definitely upset professionals who took things personally. I’m not proud of that. Everything you say and do that upsets people, it has a way of coming back around.I don’t do that anymore. I have a different way of approaching things. It’s widened my capacity to hold space”.
It pains me to hear Elly describe herself in this way, I am worried she has internalised the blame. Elly says to subvert a system that “thrives on conflict”, she is focusing on listening more and saying less, holding space for a more human way.
I questioned whether the focus was really about Ella or whether it was more about Elly. Elly describes it as “death by a thousand paper cuts” and said it was “terrifying to have such a target on my head; it didn’t feel it was ever about Ella; it was about putting me to bed”.
This feels so familiar. It reminds me of how Sara Ryan, Connor Sparrowhawk’s mother, was treated whilst pursuing justice after Connor’s entirely preventable death. I’ll come back to that.
Elly described feeling violated on every level by the process, she said her medical records and financial records were pored over.
“The attack on me personally, I’ve never known anything like that in my entire life, it was utterly cruel. It was designed for maximum impact. Psychologically chipping away at me on a daily basis. Everything I did was analysed; it was assumed I was not telling the truth”.
Elly then shared a powerful example of the impact of proceedings and the resultant self-doubt she experienced. She said people doubted that she was deaf, despite being deaf since a child.
“They questioned whether I was really deaf or not. I had to go and have a hearing test, I had to get it tested, I know I am but what if I’m not? I was left questioning my own identity”.
Elly described the support they have received from friends and how they have been such a poignant and powerful part of healing. She is also full of praise for the legal professionals who took their case, Shaun Livingston, Steve Broach KC and Tor Butler Cole KC.
Elly said at times, in her home, she couldn’t contain her emotion. She said when she burst into tears, it was suggested that she was doing so to manipulate staff.
Just the other day her own mum was ironing and burst into tears. Elly’s mum had to watch her daughter, watch helplessly as her granddaughter went through this experience. Elly is grateful to her parents who tried to hold things together while she “was falling apart”. She is clear events have had a massive impact on both of her parents and the wider family. The ripples run far and wide.
James, Ella’s father, had this to say about the family’s experience:
“I feel it was a contrived witch hunt by the Social Worker and the Manager brought in, leading to false accusations throughout. We were guilty and punished, until proven innocent, with no factual evidence”.
JusticeforLB and mother blame
What has happened to Ella and Elly, James and their family is not unique. Most of my reporting is from coroners courts, often following the premature and preventable deaths of learning disabled and/or autistic people. There are so many parallels in The Chapple Family’s experience and the experience of bereaved families.
Over the last decade I have been intimately exposed to the most vile mother blame as my friend Sara Ryan campaigned for accountability following the entirely preventable death of her son Connor in July 2013.
Connor spent 107 days in an NHS Assessment and Treatment Unit before he drowned in a bath, unattended, while staff over the corridor completed an online Tesco order. This was despite staff knowing Connor had epilepsy, a learning disability and was autistic, and despite Sara’s repeated attempts to ensure Southern Health staff knew about Connor’s epilepsy and cared for him appropriately.
On Day 63 Sara wrote:
“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”
The day after Connor died the NHS Trust responsible for his care, Southern Health NHS Foundation Trust circulated a document called ‘Potential Media Interest – Background Briefing on mother’s blog’. The trust had been monitoring Sara’s blog, but still took no action when she shared her fears for Connor.
As part of the JusticeforLB campaign, people adopted one of the 107 days the year after Connor’s death to raise awareness of what had happened to him and to raise funds for the family’s legal fees. The following year, the focus was on exploring common issues, and in Week 4, Katherine Runswick Cole wrote a blog post about mother blame, including the following:
“But if you have a child with a learning disability things are tougher still. From the moment that your child strays ‘too far’ from the ‘normal’ developmental path, you are under additional surveillance, as the blame game begins – there will be no escape.You are simultaneously the problem and the solution. You have caused your child’s delayed development (through your inept parenting or your dodgy genetic inheritance, it’s your fault either way) but, at the same time, it is you who must lead the charge to move your disordered child as close as possible towards some sort of mythical norm. Therapies and interventions replace the simple pleasures of playing with your child “you must make him look at you!”When your child starts school, you find yourself characterised as simultaneously grief stricken and in denial. Your grief makes you unreasonable, tetchy, difficult, while being in denial leads you to make unreasonable demands on the system and on limited resources . You continue to expect that your child should have the same life chances as other children, how could you, s/he is learning disabled!When your child becomes an adult, you’ve guessed it, you are still the problem. Your low/high (delete as appropriate) unreasonable (no option to delete the ‘un’) expectations will not be met. Your demands for your adult child to have a life like any other: a home, friends, a job, or, even, whisper it now, a relationship, are more evidence of your failure to accept your child’s learning disability. Surely you should be over it by now? Oh, and by the way, as your child is an adult, don’t forget, they must make their own choices, as long as these are compatible with the narrow, zero-aspirational, budget-centred (not person centred) options on offer.And then a child dies, in the most horrific circumstances, a preventable death, surely then the mother blame game ends there? No. In the aftermath of LB’s death even Mother Nature got the blame in the over hasty claim for death by natural causes. Since LB died Sara has been surveilled, smeared and blamed for the crime of loving her son and seeking justice for him and other people with learning disabilities”.
Sara has written repeatedly about the many ways in which she has been subjected to mother blame, you can see a selection of her blog posts here. The JusticeforLB campaign was accused of hacking into Southern Health’s staff’s twitter accounts, accused of trolling staff, and accused of conducting a witch hunt that led to staff being too scared to go out with wearing their lanyards for fear of reprisal. In May 2016, Sara was left a voicemail by a member of Southern Health staff calling her a vindictive, unpleasant and nasty cow (you can listen to it here). The mother blame had tipped into a new dimension, the mask had slipped, and the culture at the Trust exposed.
It should not need saying but all these accusations were without any factual base. In the Health and Safety Executive prosecution of the Trust that followed Connor’s death (and the death of another patient Teresa Colvin) Mr Justice Stuart-Smith had this to say in his judgement:
“It is clear on the evidence that Dr Ryan in particular faced not merely resistance but entirely unjustified criticism as she pursued her Justice for LB campaign – LB being short for “Laughing Boy”, which was Connor’s widespread and affectionate nickname.It is right that I should pay tribute to those who campaigned but in particular to Dr Ryan at the outset of these sentencing remarks.It is also right that I should record the Trust’s public statement that:“The Trust fully acknowledges that Dr Sara Ryan has conducted herself and the Justice for LB campaign in a dignified, fair and reasonable way. To the extent that there have been comments to the contrary by Trust staff and family members of staff, these do not represent the view of the Trust and are expressly disavowed.”
Connor’s is not the only inquest I have reported where families are explicitly blamed, they are blamed for expecting too much, whilst simultaneously apparently not communicating effectively with staff. They are blamed for sending too many emails, and for not sharing information. They are blamed for sharing feedback, and also for not speaking up when they had concerns. The blame is common.
The future
Towards the end of our conversation I ask Elly how they are now and what she hopes for. She says their goal is to try and heal their family. I guess they are left for the second time in Ella’s short life, to glue her back together, and try to rebuild her trust, whilst dealing with the trauma that has been inflicted on them all.
By sharing their experience she hopes it “opens a door for others to say that happened to me, I can say it now, because someone has said it, then it’s in part done something positive”.
Northumberland County Council have been approached for comment and have not replied.
I’ll give the final word to Elly:
“I lost myself, I’m not sure I’ll ever get back to who I was before. I’m different, very different now. There are very deep scars.We just work to ensure our family feel safe on a daily basis and that we are together. Ella just needs us to constantly show up and let her know we’re here… she’ll ask “morro, morro?” and where her family are every day.She just needs to know that her mum and dad are here, her brother and sister are here, that she is loved deeply and we’re not leaving”.
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