Robbie Powell case leads to medical records review

THE tragic case of a Swansea Valley boy whose disease went undiagnosed has prompted a review of how our medical records are kept.

Robbie Powell, of Ystradgynlais, died of Addison's disease, which affects the adrenal glands.

Addison's is a treatable disease, but no-one knew the 10-year-old had it when he died, despite a hospital consultant suggesting he should be tested for it.

A new Welsh Government report into Robbie's death in April 1990 said his case raised "some fundamental points".

Health Minister Lesley Griffiths told AMs yesterday: "I am determined to ensure we do all we can to make further improvements in our systems to improve patient safety and care.

"Today, therefore, I want us to look forward and ensure we build on the report's recommendations."

Mrs Griffiths's report made 12 recommendations, and concluded: "If the position had been as recommended…then Robbie would have received appropriate treatment."

The recommendations focused on areas including better communication with patients and families, and medical record access. One of them said GPs must have access to a patient's medical notes prior to a consultation — and that they must read them.

"Robbie was seen by five different doctors on seven occasions in 15 days," said the report. "The notes were accessible on three of those occasions and only on one of those occasions were the notes read."

Another recommendation said close family members should be told of relevant facts and the intended further treatment on discharge from hospital.

"This did not take place," said the report. "Had Mr and Mrs Powell been informed then the need for an ACTH test (medical test relating to adrenal glands) and Addison's' disease would, no doubt, have been very much in their minds at the beginning of April 1990."

William and Dianne Powell discovered after Robbie's death that Addison's disease had been suspected — and that a test had been recommended.

Mrs Griffiths's report said health care "will never be a perfect system" but that improvements such as computerised medical records — and a raft of clinical governance guidelines — had taken effect since Robbie's death.

Mrs Griffiths said children must be seen as patients in their own right who could give consent to or have an input in decisions.

She has promised nine points of action, including a review of the existing arrangements for accessing and storage of medical records.

Darren Millar AM, Shadow Minister for Health, has called for a public inquiry.

"Robbie was badly let down by a series of failings to diagnose a treatable medical condition," he said.

Plaid Cymru AM Simon Thomas called for an independent judicial review, adding: "The Powell family has been thwarted by a barrage of organisations they have turned to for the last 23 years."

Read the full statement made by Health Minister Lesley Griffiths in the Senedd:

Today I am publishing the Welsh Governments response to the recommendations following the Independent Investigation into the lessons to be learned from the death of ten year old Robert Powell - known to family and friends as Robbie. Assembly Members will recall the statement made by the First Minister in July. I know we were all saddened to hear of the catalogue of failures and missed opportunities surrounding Robbie’s tragic death. This pain has been made all the worse for his family by the subsequent events and investigations, none of which have brought satisfactory answers for them. Today our thoughts and sympathies are again with Robbie’s family and friends.

Sadly, we cannot turn back the clock. However, I am determined to ensure we do all we possibly can to make further improvements in our systems to improve patient safety and care. The purpose of this investigation was to identify learning for the NHS. Today, therefore, I want us to look forward and ensure we build on the report’s recommendations. This also provides an opportunity to focus on the needs of children in accessing healthcare, ensuring their voice is heard and they are fully engaged in decisions about their health and healthcare.

Clearly a great deal has changed in the NHS over the past twenty years. The advances in healthcare to enable better diagnosis and treatment through technology, drugs and treatments are unrecognisable from the 1990s. The introduction of clinical governance towards the end of that decade, has ensured we have the systems and processes in place to identify areas for improvement and to take action when things go wrong. This includes clinical audit, incident reporting systems and better complaints procedures.

However, we can never be complacent. There is and always will be room to improve. Healthcare never stands still.

The report makes 12 recommendations. Many of these are overlapping, therefore, I am proposing to take forward the learning in the following key areas:

Better communication and involvement with patients and their families

Accessing and managing medical records

Improving communication to ensure continuity of care

Dealing with concerns and complaints following the death of a patient.

I have taken into account work already underway in these areas to ensure we build on existing developments, particularly with ongoing and rapid advances in the use of information technology to improve communication and facilitate continuity of care through the NHS Wales Informatics Strategy. I have also identified some specific areas for attention:

The current guidance on ‘Copying Letters to Patients’, originally issued in 2006, will be subject to a full review. This will include looking at the range of options for better communication with patients and not just through letters. Sadly, poor communication remains a common theme running through the complaints and concerns we hear about health services. The review will especially focus on looking at the needs of children and how best to involve them and their families and carers in decisions about their care. It is therefore crucial we involve children directly in this review to ensure we get it right.

We also need to ensure our governance systems are robust. Therefore, I expect all Health Boards to conduct a thorough review of the processes they have in place for assuring the quality of primary care and the interface with hospital care to promote continuous improvement. This assessment with be shared with Healthcare Inspectorate Wales who will undertake a rolling programme of reviews and spot checks to both test these processes and facilitate the sharing across Wales of good practice.

I am commissioning a review of the arrangements in place for accessing and storing medical records in general practice following the death of a patient. This is with a view to updating the existing regulations which govern this area, taking into account the developments in information technology and the now routine use of electronic records in primary care.

It goes without saying that doctors are pivotal to delivering high quality healthcare services and it is essential that everyone can continue to have confidence in all of our doctors. I am pleased, a lot of work has been done in Wales to prepare for the new process of revalidation for doctors which has been designed to ensure that licensed doctors are up to date and fit to practise.

The detailed plan I am publishing today sets out the full range of improvement actions I expect to be taken by Health Boards. I have tasked the National Quality and Safety Forum to track and report progress to me at regular intervals.

So there is much we can do to make our existing systems more robust. However, we must also remember each and every day thousands of people receive excellent healthcare. The National Survey published just last week shows over 90% of people were satisfied with the care they received from their GP at their last appointment or with their last appointment at an NHS hospital. Our clinicians and healthcare staff work tirelessly to do their very best for the people of Wales. A service as complex as healthcare can never be perfect. Sadly mistakes occasionally will happen. However, when this happens we must ensure we take every opportunity to learn from those mistakes.

I sincerely hope the actions I have outlined today provide some comfort to Mr and Mrs Powell and their family. I too want to say sorry for what they have had to endure. Sadly, however, I realise no amount of effort by the Government will ever be able to make good their loss. We can only realistically hope to learn from this tragedy and remain vigilant for our patients in the future.