Scots families seeking answers from the NHS after the death of loved ones have told of medical notes going missing, health boards “closing ranks” and being accused of paranoia.
A study found that “open communication and disclosure” with relatives after medical blunders is continuing to fall short in the health service.
Researchers referenced high-profile cases including Scotland’s worst ever outbreak of Clostridium difficile, which led to the deaths of 34 patients at the Vale of Leven Hospital, in Dunbartonshire.
Families waited almost seven years for an apology from NHS Greater Glasgow and Clyde after an inquiry found there were serious failings in management, patient care, nursing and infection control.
Patients and bereaved relatives who have experienced adverse and “near miss” incidents were asked to share their experiences of the complaints process for a study led by Healthcare Improvement Scotland (HIS) and NHS Education for Scotland (NES).
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Participants described a struggle to have their voices heard and a review process that was long and arduous, which added to an already traumatic event.
Those who felt listened to and supported in a compassionate way were more confident about the safety of the healthcare system and were less likely to seek legal action.
Some families told of feeling as if the review was a tick-box exercise.
One woman who was interviewed as part of the study after losing her son said she was told an inquiry was being launched and she would be sent a leaflet.
She said: “I’ve just lost my son... we’ll send you a leaflet, it didn’t feel helpful at all.”
Another said: “Complaining... gets me nowhere, people shut down, notes go missing, people close ranks. And then you’re not heard, and you’re not believed and actually they put the blame on me and say, oh, no, you’re paranoid or whatever. I’ve had the whole works.”
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There was frustration over the length of time for reviews to be completed and lack of communication from health boards.
One participant told of sending a detailed letter about the death of a family member and, after failing to get a response, having to write another letter.
Relatives and patients said that, when there was no response to questions asked, this led to suspicions of a cover-up.
Barriers to transparency about mistakes within the medical profession include fear of being blamed, reputational damage, negative media coverage and litigation.
Researchers said tackling this required the fostering of a “just culture” where individuals are not held accountable for system failings.
However, one family member said they were told by a senior healthcare leader that individuals should take more responsibility for incidents.
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The study makes eight recommendations for a more person-centred, compassionate approach that “redresses the power imbalance” between families and the NHS.
It comes after a report into maternity failings at The Shrewsbury and Telford Hospital NHS Trust, which was published in March, found that 201 babies could have survived with better care.
The Ockenden report was critical that families were not listened to.
Donna Maclean, Head of Service at HIS, said: “Lots of good work is already under way to ensure that adverse events are appropriately reviewed and learned from.
“This study emphasises the importance of a consistent and meaningful approach to engaging with patients and families, placing them at the centre of the review process.
“We will continue working with NHS boards and NES to achieve a standardised approach and will be delivering national guidance and templates for engaging with patients and families, while the compassionate communications training has seen an unprecedented uptake across NHS boards in Scotland, with the first two cohorts currently under way and evaluation taking place also.”
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