The inquiry into the deaths at Bristol Royal Infirmary has highlighted the need for communication between doctors, patients and relatives. Graham Clews reports on the new spirit of partnership...

Since then, parents and doctors have been working together to improve communication between the medical profession and patients. Sir Ian's Bristol Royal Infirmary Public Inquiry Report produced a list of almost 200 specific recommendation with the aim of improving paediatric cardiac services.

Although only ten of those recommendations were directed solely at improving communication between doctors and patients, much of the report's thrust was that increased respect, trust, honesty and openness on both sides must be the way forward.

Parents of children who died at Bristol formed action groups, initially to campaign for a public inquiry. After this concluded, they decided to take on boards lessons from the Bristol report and put them in place themselves.

Maria Shortis lost a daughter in Bristol an was one of the most prominent campaigners for a public inquiry. She was on the founding members of the charity Constructive Dialogue for Clinical Accountability, which has been piloting training sessions at health departments around the country with funding from the Health Department. So far, London's Greta Ormond Street, Liverpool's Alder Hey and Southampton General hospitals have benefited form the training sessions developed by Mrs Shortis. She says communication should be based on a triangle model, with the child at the apex and healthcare professionals and parents at the two bottom corners. She says it is important for information to flow along the bottom of the triangle, between doctors and parents, as well as upwards to the child. At the workshops, doctors, nurses, hospital mangers and parents portray each other in role play.

Mrs Shortis says: "This gets both parents and healthcare professionals to think about their communication, and it is enormously useful to think because they can get inside other people's feelings. One of the situations we used was patients leaving a GP consultation where they were told their child was okay, and then we moved on to a situation where the child was blue-lighted into hospital. Surgeons played the roles of the patients and it made them think.

"Too often doctors simply don't have time to look into the background of a case because they are too busy making a diagnosis. It is important that they have time to look at the bigger picture."

Maintain Relationships 

Mrs Shortis and her team went into the hospitals under the banner of Parents as Educators, a scheme where families were encouraged to take an active part in their children's education. She says this allowed hospital staff to speak more openly. "Many doctors and other staff have told us they felt they could not communicate because of the hierarchical situation in their hospital. Because parents were there, it meant the doctors were aware of the reality of what they were doing. The healthcare professionals said it was of great value to hear what parents thought, without the situation being confrontational."

Mrs Shortis believes the most difficult thing for doctors to maintain is a good relationship with patients' parents when something goes wrong. She says: "Doctors have to look at how to maintain that relationship with the family but keep being honest at the same time."

Both staff and parents believe the exercises have been a great success and they are planning to run similar workshops at other cardiac centres.

Mrs Shortis says: "It is all about raising awareness and getting people to realise their own strength and communication skills. If we can take people out of their intensive working environment and give them a place where they can laugh and think - and even cry if they want to- that can only help."

Alder Hey Children's Hospital care group manager Paul Hetherington says the two workshops held at the hospital were so successful that it is looking at running similar schemes for other specialities.

He says: "I can't stress too much how useful this was. It gave us the opportunity to take time out and think about how we deal with patients and their parents. We are doing things on a day-to-day basis but it is often difficult to get the parents' view because the issues are so complex. Speaking to bereaved parents gave us an insight into how they viewed their child's treatment. They were all enthused."

Great Ormond Street professor of paediatric cardiac morphology Robert Anderson, who is also president of the British Paediatric Association, described the Bristol inquiry as a 'wake up call'.

As long ago as 1999 he took up the task of establishing a dialogue with parents, having recognised that, in some cases, the trust essential for good relationships between doctors and parents had been lost. Professor Anderson admitted that at the time that some of his colleagues had reservation but says his actions were vindicated by subsequent event.

Along with representatives from the Children's Heart Federation, Constructive Dialogue for Clinical Accountability, and the Paediatric Cardiac Nurses Association he set up a working party to draw up guidelines on relationships between paediatric cardiac units and families.

The result, Children's Heart Services - a Guide to Care Standards, was published this month. The Health Department is currently reviewing its paediatric and congenital cardiac service and the new guidelines are expected to feed into that.

Advice to Staff

The government has welcomed this spirit of partnership. National clinical director for children Professor Al Aynsley-Green says it shows what can be achieved when doctors and parents work together. He intends to use the same approach as he develops the Children's National Service Framework.

The guidance gives advice to staff working in paediatric units and to parents all the way along their child's treatment pathway - diagnosis, awaiting treatment, the operation, post-operative care and discharge to continuing care.

It includes advice on consenting to surgery, transferring to adult services, and bereavement. It also looks at how communication can be improved by cutting jargon and ensuring parents understand what they are told.

The working party discussed the importance of doctors telling families the true position, no matter how difficult that might be for them to accept, to avoid accusations of paternalism and protectionism.

Professor Anderson says: "We believe that these guidelines will help build an honest and trusting relationship between the two parties, essential for optimising the diagnosis and treatment of children in our care. They will do this by providing parents with accurate, realistic and understandable information about their child's condition at all times."

Attitude Change

Children's Heart Foundation chairman John Spall, who was on the working party, says he has been pleased with the 'refreshing' attitude of the doctors who joined him on the working party. He says: "We won't be on the road to Damascus overnight but we are definitely heading in the right direction. Changing the culture is always going to take time and there remains the question of funding. The idea of a cardiologist seeing 30 sets of parents in two and a half hours is nonsense, so we shall be pressing the government for more funding."

Mr Spall says the guidance was not designed to follow the public inquiry's recommendations to the letter, but it takes into account the spirit of Sir Ian's advice.

Sir Ian says in his conclusion to the public inquiry report: "Patients in their journey through the healthcare system are entitled to be treated with respect and honesty and to be involved, wherever possible, in decisions about their care."

Mr Spall says: "We did not go through the Bristol recommendations on a 'tick box' basis. We started with a clean sheet of paper and, although we did not agree with everything the doctors said and they didn't agree with everything I said, I was pleasantly surprised with everyone's attitude."

The guidance has been sent to cardiac centres around the country. The intention is that parents will be given a copy of it as soon as practicable following the diagnosis of their child's condition.

Mrs Shortis says: "Hopefully we can bring something positive out of this tragedy. I lost my daughter 16 years ago and to see something worthwhile put into place has been marvellous."

Article first printed and shown here by kind permission of BMA news.