Now there's a chance for families to avoid their own Ashya King anguish

http://www.theguardian.com/society/2014/sep/07/how-mediation-prevent-repeat-ashya-king-case-nhs

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Ailing five-year-old Ashya King is once again with his parents, Naghmeh and Brett, while the health team at Southampton general hospital continues to be muzzled by confidentiality. Meanwhile, questions concerning mismanagement of the case by the police, the Spanish and the British courts, the hospital and the Crown Prosecution Service continue to grow. There has, however, been little exploration of whether a different, more conciliatory path, could have been pursued that avoided the Kings' flight, kept Ashya's best interests firmly at the forefront and held the media circus at bay.

A two-year pilot on conflict resolution and mediation at the Evelina London children's hospital that ends in 2015 might help to point the way. Unique in the UK, the Evelina Conflict Resolution Project is training around 1,000 staff to de-escalate conflict and improve communication with parents. In addition, there is a service offering advice to families, an improved system of dealing with complaints ("When a parent reads a letter from us, does it say, 'These people care about my child?'" says Helen Holloway, joint head of nursing), and mediation to find a path through an apparently intractable situation.

"A mediator is impartial," says Sarah Barclay, a former BBC journalist, founder of the not-for-profit Medical Mediation Foundation, heading the pilot, who also devised the training programme, based on interviews with staff and parents involved with conflict. "A trained mediator can't decide what is best, but he or she can make sure that everyone is heard and seek a resolution with as little collateral damage as possible."

During a morning in Evelina, a group of half a dozen nurses and sisters are taught the pathways to conflict, using a traffic lights scheme of green, amber and red. Green involves insensitive use of language (describing a child as "moribund", for instance); professionals giving conflicting messages and a lack of understanding of the circumstances of the whole family, including difficulties with other hospitals. "A mother may have three other children, no help and no money," says one nurse. "That adds pressure."

Amber is when staff and family begin to take sides; staff avoid contact with a "difficult" parent and families take notes and question the expertise of the staff in granular detail. By red, the child is no longer the focus and conflict takes on a life of its own.

The training advocates open questions. A mother expresses concern about a child's operation. "What's worrying you?" is preferable to "Oh, she'll be fine."

Mediation costs around £1,500 a case compared with court cases that leave taxpayers footing tens of thousands of pounds for the legal bills of the NHS.

Victoria Butler-Cole, unpaid adviser to MMF, is the lawyer who acted as counsel for an NHS trust when the mother of seven-year-old Neon Roberts took the trust to court to challenge the need for her son's radiotherapy. "Courts would love more mediation," Butler-Cole says. "It's infinitely better than to go to court, where the judge sides with the health professionals nine times out of 10 and the situation is polarised still further."

Aspects of the King case are bound to be repeated with increasing regularity as parents push for cultural change in children's hospitals. The deference shown to doctors has diminished and many parents are amateur experts if they have access to the internet and are willing to go "doctor shopping". Hospital staff shortages and poor organisation also play a role, and medical decisions and a family's wishes are inevitably freighted with ethical dilemmas.

"What counts more: to live a little longer and suffer a great deal, or quality of life?" asks Dr Simon Meller, former director of the Children's Cancer Unit at the Royal Marsden hospital in London and a director of MMF. "It is a situation that's impossible for parents to solve on their own. What's so much better is a mutually agreed solution with a child, not the parents, always at the centre."

In three months this year, there were 68 instances of conflict at the Evelina – "the tip of the iceberg", says junior doctor Charlotte Sayer, research assistant on the pilot. The conflicts included communication breakdown (33), disagreement about treatment (23), unrealistic expectations (16), and families attempting to micro-manage (13).

Conflict absorbed 241.25 hours of staff time. In a survey of staff that had completed the pilot's training, 86% reported it had helped them to recognise the triggers of conflict and de-escalate it. Conflict affects families but it also results in staff sickness, work disruption, less time for other patients and divided health teams.

"A lot of staff assume conflict is just part of the culture," says Sayer. "In medical training we are taught about communication, but not about actively listening to what parents say."

In 2011, Henrietta and Andy Bonugli spent five unhappy months at Evelina with Isidora, now 15, known as Isi. She has Rett syndrome, a rare genetic illness that mostly affects girls. Symptoms include problems with breathing, walking and seizures. Stays at other hospitals had not been positive. "Isi doesn't have a voice, but that doesn't mean she can't communicate," Henrietta, 44, says.

"We could so easily have been the King family. At Evelina, I requested at least twice a day that Isi was moved to another hospital. I told the sister that I intended to take Isi – she said that if I did the police would be called."

Among the incidents, a tube feed was increased rapidly against Henrietta's wishes, causing severe vomiting. Isi's medical records say this was a "misjudgment". The medical team were "very sorry" and agreed the feeds should have been increased more gradually.

The differences between clinical judgment and Henrietta's knowledge of her daughter meant trust broke down. The couple recorded 36 hours of conversations with consultants because, they said, they received conflicting information on a daily basis and needed correct information to seek help from a US gastroenterologist.

Isi was eventually rushed to paediatric intensive care with respiratory failure. "In the ward we weren't consulted or listened to,"Henrietta says. "In the unit we finally felt safe. The consultants discussed it with us and together we found a way to improve Isi's health."

For the past three years, Isi has been successfully cared for at home in Kent, requiring tube feeding every half hour, by her dedicated parents and a multidisciplinary team. "Some doctors have a tendency to look at the condition but not at the child," Henrietta says. "That doesn't help."

One paediatrician involved in Isi's case was Dr Esse Menson, who was so concerned by the breakdown in communication that she called on the help of Sarah Barclay. Subsequently, they established the Evelina Conflict Resolution Project. "When your own children are ill, you realise how disempowering it can be," Menson says. "In paediatrics, conflict is less about shouting or violence, it's as if the staff and parents are talking two different languages, so nothing moves forward. If a child recovers but the family remain angry and upset, that's not success."

Alex Phillips is matron on the Neonatal Intensive Care unit staffed by 150 nurses. Twenty years ago, she says, the survival rate for babies born at 24 weeks was very low; now many more survive but often with extreme complications. Barclay helped to mediate with the team when a parent was divisive and refused mediation herself. "It's voluntary," she points out. "Not a punishment."

Phillips is a mediation convert. "In the past we operated in first gear, now we're constantly in fifth. It's crazy. It's easier to run into the drugs cupboard and avoid a challenging parent instead of talking – yet talking is what's missed."

Dr Hilary Cass, president of the Royal College of Paediatrics and Child Health and a consultant in paediatric disability at the Evelina, says: "Sometimes it's difficult for families and clinicians to reach a shared view … where it does escalate it's not good for anyone, particularly the child who is stuck in the middle. Based on the success of this pilot, we hope to see similar schemes rolled out in hospitals across the country."

Isi's mother has no doubts. "Sarah was brilliant," Henrietta says. "Mediation was brought in too late for us, but I saw it as such a positive intervention. I am 100% behind it if it can save families from the grief that we went through."