New NHS guidelines for England have called for bereaved families and carers to be given a “clear, honest, compassionate and sensitive response” after the death of a loved one.
The guidance, published on Wednesday by NHS England, sets out different stages following a death and asks trusts to involve families throughout. It states that bereavement support, advice and advocacy support should be provided to all bereaved families.
“Families’ insights and experiences have shaped the guidance”
National Quality Board
More than 70 families and carers worked with NHS England to help create the guidelines by attending events in November 2017 and via ongoing input through email updates.
According to the document – titled National Guidance on Learning from Deaths – feedback from families at the events included that “families should be told clearly what’s happened, how it happened and what will happen next”.
Developed on behalf of the National Quality Board (NQB), the new guidance sets out eight principles that families can expect to occur after the death of someone in NHS care.
They include treating “bereaved families and carers as equal partners following a bereavement”, giving the bereaved “clear, honest, compassionate and sensitive response in a sympathetic environment”, and informing the bereaved of “their right to raise concerns about the quality of care provided to their loved one”.
The principles also outline how bereaved families and carers should “receive timely, responsive contact and support in all aspects of an investigation process, with a single point of contact and liaison”.
“My deep gratitude goes to every family member who has contributed”
In addition, they state that families and carers should be “partners in an investigation, at whichever stages, that they wish to be involved”.
NHS England said the guidance formed part of the Learning from Deaths programme being led by the National Quality Board.
The guidelines come after a report from the Care Quality Commission stated that families’ experiences and insights were a valuable source of learning, and that families and carers should be treated as equal partners to identify opportunities for improvement.
The quality board said it believed these principles would “help trusts and commissioners to identify where they can make improvements in how they engage with families”.
“Families’ insights and experiences have shaped the guidance. Some have spoken of not being treated with respect, sensitivity and honesty at the worst point of their lives,” noted the board.
“This is especially the case in circumstances where there may have been or were issues with the care provided” it added.
“We have had guidance before. It needs to be made to stick”
Professor Jane Cummings, chief nursing officer for England, said: “My deep gratitude goes to every family member who has contributed in shaping this instrumental guidance.
“The families involved have shown huge commitment and a desire to help bring about improvements in the way trusts and families work together,” she said.
Professor Cummings also said that understanding the families’ perspective would help trusts to enable “meaningful engagement and a consistent quality approach across England”.
However, the charity Action against Medical Accidents (AvMA) cautioned that the guidance would need to be supported by further action to have an impact.
By itself, guidance “will not address the strategic and cultural issues in the NHS which allow far too many avoidable deaths to occur,” said the charity.
AvMA chief executive Peter Walsh said: “The guidance is welcome but we have had guidance before. It needs to be made to stick.
“Families need to be equal partners in investigations or inquests into their loved one’s deaths,” he added.