Feature

After the truth, reconciliation

The Bristol inquiry has reported, but can the NHS learn the lessons? Maria Shortis, whose daughter died after cardiac surgery, believes there is a way forward

On July 18 this year the report of the public inquiry into children’s heart surgery at the Bristol Royal Infirmary was finally published. Together with the annexes it runs into 12,000 pages and contains 198 recommendations that reflect the patient’s journey.

The report recognises much has changed in the NHS since the period under review, 1984-95. For the past five years, Bristol has run one of the most scrutinised clinical audit systems in both adult and paediatric cardiac surgery. It is now one of the safest units for heart surgery in the country.

This is large measure due to the efforts of Dr Steve Bolsin and other concerned individuals who campaigned jointly with parents to ensure that unnecessary harm inflicted through a culture of institutional arrogance and lack of insight would not impose itself on future generations.

For constructive reform to take place, according to the Kennedy report, ‘perhaps the most significant change we call for is one which does not attract a specific recommendation. This is the change that is needed in the culture of the NHS. We see changes to that culture as being a product of the recommendations as a whole. If the recommendations are implemented changes in culture will follow.’1

Entrenched patterns of behaviour are difficult to break. For years, the NHS has exploited the goodwill of its doctors and nurses. Professor Kennedy spoke of the Dunkirk spirit that still exists in the NHS.¹ Rightly or wrongly, the medical profession feels that it has been placed under intense media and public scrutiny and has undergone a doctor-bashing onslaught unprecedented in its history.

Both parents and health professionals acknowledge that the problem is, in part, due to the paternalistic and self-regarding attitude of some doctors which is reflected in their communication with patients/parents. It appears that some doctors refuse to understand that while patients/parents may come to consult them for advice, they also bring with them their own expertise, knowledge and ability to make decisions based on the information received.

Patients or parents may not have science A-levels or be medically qualified, but they nevertheless have some understanding of what is happening to their body and mind, or that of their child. As one parent said: ‘The days of “doctor knows best” are over and what is needed is partnership based on respect.’ Where the patient is a vulnerable child, a partnership needs to be created that recognises parents as experts in the care of their children and ensure they are an integral part of the decision making process.

The Kennedy report states: ‘The notion of partnership between the healthcare professional and the patient, whereby the patient and the professional meet as equals with different expertise, must be adopted by healthcare professionals in all parts of the NHS, including healthcare professionals in hospitals.’¹

Nurses in particular have an important liaison role between clinicians and parents. Senior paediatric cardiac nurses understand the journey that families undergo on all levels including the practical, physical and emotional. It is to be hoped that colleagues in cardiac services, who currently lack insight into the emotional level of support families require, will listen to and be guided by such skilled clinicians.

The journey from pre or postnatal diagnosis to either a positive or negative conclusion is one of emotional and physical survival. Imagine the carnage from a bomb exploding near a family with young children. Such images confront us only in television coverage of war-torn parts of the world. For families of children with a life-threatening illness, the bomb explodes at an emotional level, fragmenting bit by bit as another piece of difficult and potentially life-threatening information is received.

Recommendation 59 of the Kennedy report says: ‘Education in communication skills must be an essential part of the education of all healthcare professionals. Communication skills include the ability to engage with patients on an emotional level, to listen, to assess how much information a patient wants to know, and to convey information with clarity and sympathy.’¹

Active listening is, according to parents, the most important communication tool to be mastered by health professionals. Communicating with patients on an emotional level engages the health professional with the human dynamic of hope, fear and pain. Time, skilled supervision and support are an essential part of communication skills training. This will need a substantial degree of funding to effect the necessary changes outlined in the Kennedy report.

It is important to remember that the majority of children undergoing cardiac surgery survive and lead healthy and normal lives but a small number of those with a congenital heart condition will not.

Jacinta was such a child. I sought emotional support and clarity of information from the consultants in charge to enable us, her parents and brother, to prepare for her death. What I met was a complete inability to accept the inevitability of death.

Death was seen as failure and any preparation for it was seen as anathema. Any death is a tragic outcome but it is also a fact of life and it has to be faced. I did not want Jacinta to die, I did not want her to have five serious heart defects – but she did, and she was condemned to a short life. There was nothing that either we, or the clinicians treating her, could do about it.

But what they could have done – and failed to do – was to be honest and consistent in their communications with me. Because of their inability to deal with mortality, I received many mixed messages. It is vital that parents and professionals work closely together when it is clear a child is going to die. It is always a tragedy for the family and, in particular, the parents and siblings, but it is part of necessary grief.

I recently heard a parent describe how his daughter never regained consciousness after surgery and was kept on a ventilator for 13 days. Her chin had begun to rot and she was packed in ice, all but dead. In all that time postoperatively, he and his wife were not openly helped to prepare for their daughter’s death. Instead, they were distanced from the reality of what was happening and told not to lose hope.

My personal commitment to investigating the problems of Bristol stemmed from my experience of the inability of the senior consultants in charge to communicate effectively, the consequences of which inflicted an unnecessary strain on our family. Necessary grief is part of life, but what happened to many parents in Bristol was a story of unnecessary grief, late diagnosis, misdiagnosis, failure to give clear consistent information and of being given unrealistic and false hopes based on national average surgical outcomes.

The Kennedy report states: ‘Bristol was awash with data. There was enough information from the late 1980s onwards to cause questions about mortality rates to be raised both in Bristol and elsewhere had the mindset to do so existed. Little, if any, of this information was available to parents or to the public. Such information as was given to parents was often partial, confusing and unclear. For the future, there must be openness about clinical performance. Parents should be able to gain access to information about the relative performance of a hospital, or a particular service or consultant unit.’¹

It is vital that Bristol’s legacy to the next generation is that of a culture predicated on honesty, openness and transparency. So what steps are being taken to implement positive change?

Constructive Dialogue for Clinical Accountability (CDCA) is a charity set up as a result of the constructive dialogue I had with members of the health profession during the campaign to persuade both the General Medical Council and the government to hold inquiries. Its aim is to repair trust between the NHS, the medical profession and patients, with a view to making both NHS users and providers accountable.

Later this year the CDCA, together with the British Paediatric Cardiac Association (BPCA), the British Paediatric Cardiac Nurses’ Association and the Children’s Heart Federation, intend to publish model guidance for paediatric cardiac services nationally. A joint working party was set up 18 months ago through the efforts of the BPCA that recognised that it had effectively lost the trust of patients and parents.

The model guidance is a proposed minimum standard that a patient and family should expect from the cardiac services team. Much of the guidance is already in place in units nationally and will hopefully reflect the practical, physical and emotional journey undertaken by families with a child with a heart defect.

It is important that the surgical outcomes from each paediatric cardiac unit in the UK up to April 2001 are published as soon as possible. Without this information parents will continue to suspect that there is something to hide.

In reality, figures for paediatric cardiac surgery in the UK show it to be of an appropriate and safe standard. Continued publication must rely on robust funding from the Department of Health to provide accurate data collection at local unit level. It will ensure that, in future, parents of children with congenital heart defects will be able to rely on cardiac audit as a tool of patient safety and clinical excellence.

Openness and transparency can only significantly reduce suspicion, repair trust in a battered medical profession, increase clinical standards and reduce the emotional trauma for everyone involved in caring for children with congenital heart disease.