It has been common knowledge for decades that people with learning disabilities and mental health problems are dying prematurely, yet a Government review has found hospitals are still not bothering to investigate these deaths.
The report ‘Learning, candour and accountability’ commissioned by Health Secretary Jeremy Hunt and carried out by the Care Quality Commission, calls on NHS hospitals to urgently prioritise learning from patient deaths and to include families more when they carry out investigations.
A national framework is also needed so NHS trusts have clarity on the actions required when someone in their care dies, according to the CQC.
In response, campaigning charities Mencap and the Challenging Behaviour Foundation said the culture of NHS trusts needs “radical change”.
This England-wide review of the way NHS trusts review and investigate the deaths of patients was sparked by a review of all mental health and learning disability deaths at Southern Health NHS Foundation Trust from April 2011 to March 2015, after Connor Sparrowhawk died.
Connor, who had a learning disability and epilepsy, died in 2013 while receiving care. He drowned during an epileptic seizure in the bath at Slade House, a learning disability unit, run by Southern Health NHS Foundation Trust. The family was told he had died of natural causes however an investigation found his death was entirely preventable and neglect had contributed to his death.
Very low numbers of investigations
The investigation into his death revealed that Southern Health NHS Foundation Trust only held a review into one per cent of deaths of people with learning disabilities over a four-year period.
In the report, Professor Sir Mike Richards, Chief Inspector of Hospitals, said: “We found that the level of acceptance and sense of inevitability when people with a learning disability or mental illness die early is too common. This may often be due to unidentified or unsupported health needs that, in many cases, will offer even greater opportunity for learning.”
He added: “There can be no tolerance of their deaths being treated with any less importance than other patients.”
Families treated poorly
The way their families are treated is also poor, according to Dr George Julian, special advisor on Family and Carer Experience at the CQC, who said: “When a loved one dies in care, knowing how and why they died is the very least a family should be able to expect. Yet throughout this review process we have heard from families who had to go to great lengths themselves to get answers to these questions, who were subjected to poor treatment from across the healthcare system, and who had their experiences denied and their motives questioned.”
He added that health and social care professionals have a moral and legal duty to be open and honest with families following a patient’s death.
He revealed that not all healthcare staff were kind and compassionate, with families describing some staff as being “incredibly kind”. Yet the same families also reported being ignored by others and feeling their questions were left unanswered.
Professor Dame Sue Bailey, chair of the Academy of Medical Royal Colleges said the report “is not about blaming individuals, but about the health service learning the lessons from this report”.
In response to the report, Jan Tregelles, chief executive of Mencap, and Vivien Cooper, chief executive of The Challenging Behaviour Foundation, said: “This report recognises radical change is needed to transform a culture across NHS Trusts where learning from mistakes that led to deaths is not currently a priority. Over 1,200 people with a learning disability die avoidably in the NHS every year. It is deeply concerning that many of the NHS Trusts visited did not understand the specific support needed by people with a learning disability.
Families need respect and compassion
“Losing a member of your family and finding out their death was avoidable is devastating and traumatic. Families need to be treated with respect, compassion and need direct and transparent involvement in investigations as to why their loved one died.”
They added: “The recommendations in this report need to be urgently taken forward. This requires a change of culture, attitude and processes to end a healthcare system that is currently failing people with a learning disability and their families.”
This learning from patient deaths must include end of life care, according The National Council for Palliative Care (NCPC).
Claire Henry, chief executive of the NCPC, said “This report makes it clear that we cannot improve people’s care in the future if we do not learn from current deaths. It’s essential that this investigation includes the end of life care the person received. Even though end of life care does not prolong life or hasten death, the way someone dies has a big impact on the family and carers left behind. This must include not only the care received, but also any issues that were raised or requested but not addressed.
“We need to make sure people are safe right until the end of their lives; this means ensuring they get the care they need at the right time in the right place, and the voices of relatives and carers must be listened to in this process. This isn’t about blame; it is about improving the care and treatment we receive at all stages of our lives, including the time when death is inevitable. Everyone has a right to good quality end of life care, and we applaud the CQC’s commitment to improving this.”
Health Secretary Jeremy Hunt made a statement to Parliament in the wake of the report, where he paid tribute to Connor’s mother, Sara Ryan and her “persistent and determined campaigning for a proper investigation”. He said: “Mr Speaker, the culture of the NHS is changing following a number of tragedies. But this report shows there is much progress to be made in the collecting of information about unexpected deaths, analysis of what was preventable and learning from the results. Only by implementing its recommendations in full will we honour the memory of Connor Sparrowhawk and I commend this statement to the House.”
He revealed that from next year the UK will become the first country in the world to publish data on avoidable deaths at a hospital by hospital level.
To read the review go to http://www.cqc.org.uk/content/learning-candour-and-accountability