Leeds Teaching Hospitals NHS Trust Overarching report about paediatric cardiac surgery A report for NHS England October 2014

All NHS organisations need to give the accuracy and completeness of their data a high priority, for their own assurance and to assure patients, regulators and commissioners that their information can be relied upon.

When important discussions are held, important decisions are made, and irreversible actions are taken, medical records should be written so as to pass the ‘pick-up’ test: that a colleague (or investigator or reviewer) with no knowledge of the case could pick up the file and understand why and how decisions were made, not simply know that they were made. This is not necessarily a bureaucratic or time-consuming process because it can be included in a simple template, checklist or aide-memoire that ensures all relevant information is captured.

Written guidance for carrying out and recording risk-assessments and decisions at Multi-disciplinary Team meetings should be prepared, in the interests of consistency and clarity. This applies across the NHS. These need not and should not be bureaucratic or time-consuming but should distil the existing best practice of decision-making at the centre. The pro forma for these meetings should reflect the process.

Centres should develop written clinical care pathways for the various congenital heart disease conditions of the patients they treat. Written individual treatment plans should be prepared for each patient by reference to the clinical care pathway. They should be regularly updated and given to and discussed with the patient’s parents or carers. The pathway should be open about the many variables that influence treatment options but create a framework to help ensure consistency, clarity and open communication.

Leeds should review its communication policies to ensure that they meet current patient expectations. This should include how to give families an opportunity to raise concerns anonymously because some families fear that anything construed as a complaint may affect their child’s care. Resources should be put into this because dealing with the consequences of poor communication is inevitably upsetting for parents and clinicians. The cost of doing so would be better spent on improving communication.

We recommend that NHS England should give consideration to having a service-wide discussion about referral policy, so that common standards can be agreed, or, at least, that the differing policies at different centres are understood by all centres.

We recommend that any centre that accepts self-referrals develops and publishes a protocol for managing the transfer of care. Such a protocol should include notifying the hospital previously treating the patient.

Regulatory bodies should consider including evidence of robust referral protocols and their effective use as markers of quality services.

Where families raise concerns other than by way of complaint to the relevant provider trust, those receiving the concerns should establish whether the families are looking for answers or raising quality concerns. If the former the concern should be investigated as a complaint. If the latter the family should be invited to raise concerns with the appropriate regulator and if they are willing to do so with the relevant trust.

Any review that leads patients or their families to reasonably believe that clinical advice from a doctor could be coloured by his or her self-interest is not well structured. We recommend those setting the terms of reference of such reviews should be alert to this risk.

Where such anxiety by parents is expressed or is likely, staff at both hospitals affected by the review have a duty to minimise it. They should anticipate the possibility of such fears and offer convincing reassurance that all advice is given simply in the interests of the child. Leaders in the organisation should anticipate such problems and prepare for them.

Those making decisions where reconfiguration is being considered have a responsibility to ensure that relationships between medical and nursing staff at ‘competing’ trusts are not damaged. This should be built into the systems and processes.

Managers at affected trusts also have a responsibility to ensure that strong, respectful relationships are maintained between staff at ‘competing’ trusts.

During the course of any review, consultation or implementation of reconfiguration a trust’s management must give a high priority to minimising the understandable anxiety in staff likely to be affected.

Professionals should make clear when they pass on concerns about other professionals whether those concerns are their own or those of patients or families. Before professionals pass on the concerns of patients or families, they should establish whether the patient or family has complained formally to the trust concerned. If the families have complained, the professionals should include any response from the trust when they pass on concerns. If they have not complained, the professionals should find out why, and provide that information when passing on the concern.

NHS England should publicise the fact that all cardiac units in the UK undertake sufficient numbers of operations for safety, as currently measured. This should help reassure families that their children are not being treated in units with sub-optimal numbers.

NHS England should act to dispel the “almost morbid sense of spectatorship and foreboding that hangs over these services”, ensuring that all stakeholders, service-users and their families are involved.’ This could be done during, and as a part of the New Review1. The leaders of trusts containing these services also have an important role in providing accessible information about the safety and quality of their service. We recommend that they work together on this, to avoid any element of competition that would give rise to the very worries they should all be trying to dispel.