Family tragedy shines penetrating light on failures of state care

Published by The Daily Mail (26th November, 2015)

The case of the Clarence family is one of the most harrowing to have hit the headlines in recent years: a loving mother who cracked under the intense pressure of caring for her three severely disabled children and smothered them to death.

It is impossible not to feel desperately sorry for everyone in that blighted family: the girl aged four and the three-year-old twin boys who lost their lives; the mother now detained in a psychiatric hospital, tormented by her deeds; the traumatised father left alone to rebuild his life.

This week saw publication of a 70-page report by Kingston Council into the killings last year at the wealthy family’s South London home.

The investigation found Tania Clarence became depressed and ‘overwhelmed’ by caring for her children. It also claimed she and husband Gary’s affluent middle-class status and assertiveness cowed social workers and ‘posed a challenge’ to professionals trying to help them. It concluded the deaths could not have been avoided.

But is this really the story of an arrogant, middle-class family who obstructed caring helpers – or of a devoted couple who weren’t trusted to judge what was best for their children with disastrous consequences?

For his part, Mr Clarence, an investment banker, said his wife’s struggle with depression was worsened by ‘constant pressure’ from as many as 80 medical professionals and social service officials – with profound disagreements caused by the couple’s determination to put their children’s quality of life before painful medical interventions.

At heart, this is a family tragedy of epic proportions, of maternal dedication turning into deadly despair. But it also shines a penetrating light into the behaviour of the state when involved in caring for people and their families desperately in need of help.

It raises troubling questions about incompetence, poor management and the reluctance of professionals to trust the opinions of families and patients. It raises questions, too, about the arrogance of doctors and a failure to support someone with obvious mental health difficulties.

Much of this is wearily familiar to me as the father of a daughter with profound and complex disabilities, a parent who has faced issues similar to some highlighted in the dry language of Kingston Council’s serious case review.

Like Mr and Mrs Clarence, like so many parents in our position, our struggle to care for a seriously-ill child has been compounded by the dogmatism, incompetence and inertia of some of the professionals paid to help us cope.

All too often the biggest challenge has been the system, not our daughter’s condition.

The Clarences, of course, faced far more intense problems. They had three children born just months apart with type 2 spinal muscular atrophy – a rare and incurable genetic condition that impacts on physical development and can shorten life expectancy.

Most parents of severely disabled children suffer what is recognised now as a form of mourning, with depression commonplace and some having suicidal thoughts. This is unsurprising given the instant shattering of expectations, the worries over the child, fears for the future and feelings of isolation.

Certainly, I suffered very dark days after my daughter was born 22 years ago; I was kept going at times only by the strength of my wife and thoughts of my son. My state of mind was not helped by my daughter’s anguish, her screaming and seizures – nor by years of long nights without sleep.

My daughter also has a rare genetic condition, although one that was only diagnosed five years ago. It leaves her needing 24-hour care, with complex epilepsy, blind and unable to walk or talk.

The diagnosis must have been shattering for the Clarences. And by late 2010, shortly after the twins were found to have the same disorder as their sister, experts knew their mother was struggling to cope.

No one can doubt that there was immense public sector input, with an astonishing nine health organisations, three local authority social care departments, two schools and one charity involved in their case. At times, there were more than 60 professionals involved with the family.

Yet, from experience, I can only imagine how confusing and annoying this might have become, with each expert asking the exhausted parents the same tedious questions over and over again about the birth, the family background, the daily life, the diet of their children. Few seem to bother reading records.

Yet scandalously, despite the involvement of so many officials, little seems to have actually been done to help the parents. Lots of talk, lots of meetings – but no real action.

Partly this was due to the lamentable confusion over who was the professional actually in charge of their case. Some officials thought there was no leading figure, others identified different doctors or a social worker.

Meanwhile, relationships deteriorated between the Clarences and the professionals assigned to care for the family. This can happen all too easily if you have the temerity to disagree with experts who think they know best.

Quite rightly, the Clarences wanted their children to have the best quality of life possible with minimal pain; the army of experts thought differently and struggled to handle the assertiveness and articulacy of this successful middle-class couple.

The battle partly focused on disagreements over a gastrostomy, an operation to insert a tube into the stomach for feeding or fluids. The parents feared this would cause their daughter pain but not improve her life significantly.

We faced similar pressures from professionals when our daughter’s weight fluctuated due to severe seizures. Like the Clarences, we resisted strong persuasion from doctors who wanted to perform the same operation on our daughter. We felt that food was one of her pleasures, as well as a form of communication allowing us to interpret her moods.

Watching her eat chocolate cake with enthusiasm today, I am glad we stuck to our guns. Just as we did when we refused to allow another doctor to place her on a complicated high-fat diet to prove a pet theory on diet and epilepsy.

We avoided a serious fall-out with these professionals by switching to other care teams, eventually finding sympathetic medics and officials we could trust – and who trusted us to know what was best for our daughter. They saved us from doom and helped us face the future.

The Clarences were not so lucky. They were scorned as pushy middle-class parents after rejecting advice from the professionals, leading to a breakdown in their relationship with them – and the most tragic consequences imaginable.

Like the Clarences, we have overheard comments from members of health teams about our affluence, as well as snide asides about our middle-class home. The implication, presumably, is that we don’t deserve support.

Such attitudes snobbishly – and wrongly – presume that working-class families fail to fight for their children as hard as those from more prosperous backgrounds.

The Clarence case report said social workers felt intimidated by the couple’s assertiveness, but this feels like an explanation for the tragedy that smacks of lame excuses. Meanwhile, child protection processes were delayed because it took so long to reach a consensus on what action to take among the vast group of professionals involved.

The fact is that there was a dismal failure from all these well-paid people to help a mother suffering a mental breakdown, and whose family was under extraordinary pressures despite its affluence.

As the report reveals, there was one social worker with whom the Clarences developed a good relationship. But, incredibly, this official was moved off the case in favour of someone told to take ‘a more authoritative approach’.

The struggling family were unable even to say goodbye to the first social worker with whom they were developing a trusting relationship.

Yet this is not unusual – I have heard from other families of how supportive social workers are moved after forming too close a bond.

Attachments are officially frowned upon; my own family has seen a constantly changing succession of staff, few of whom stay around for long.

Surely, it is utterly wrong to drive out humanity and friendship from a service that depends on good relationships between patients and carers to achieve difficult aims; it’s an attitude that also undermines the motivation of dedicated staff.

I spoke at a conference for people with learning difficulties last week and heard about a carer who was banned from inviting someone to her wedding with whom she had worked for a decade. How can we have decent care without trust and friendship?

The terrible outcome in the Clarence case could not have been predicted – but legions of bungling bureaucrats, dogmatic doctors and slipshod social workers should heed lessons from this heart-rending story. For it is hard to avoid the conclusion that a mother who turned on her children was crushed as much by the failure of the state and blinkered attitudes as by her tragic circumstances.

The phrase ‘mercy killing’ was used in her trial last year. Yet there was nothing merciful over those pitiful deaths of three innocent children with so much to live for despite their difficult condition.

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