Patient experience: who is listening?

The story behind Martha’s rule is depressingly familiar. A parent raising significant concerns about their daughter’s ongoing care only to be ignored with tragic consequences. Unfortunately, this feels like the latest in a long line of incidents where the NHS has failed to heed warnings from patients and their families about the quality of their care.

Sir Robert Francis’s inquiry which examined the failings in care at Mid Staffordshire NHS Foundation Trust between 2005 and 2009 found that ‘patients and relatives felt excluded from effective participation in the patients’ care’.  The Keogh review in 2013 found there was a limited understanding of how important it was to involve patients and families in their care in the 14 trusts investigated because they had had higher than average mortality rates. More recently the Ockenden review into maternity services at the Shrewsbury and Telford hospital NHS Trust found that ‘For far too long, women and families who accessed care at the trust were denied the opportunity to voice their concerns about the quality of care they had received.’ There are many more examples I could have chosen to make the same point. Despite these and many other reports, inquiries and reviews, the NHS, at all levels, whether in clinical care or at board level, is still too often not listening to people who use its services.

The King’s Fund has recently been working with the Heads of Patient Experience network (HOPE) and a story we heard has stayed with me since we were told it. A head of patient experience in a hospital had been tasked with providing patient stories to present at the board meetings of their trust. They did this, but after a few of these meetings, they were told that the board needed to hear more positive stories in future. The negative stories are still being collected but they were not being heard, leaving the head of patient experience feeling alone with them. Again this is not new, the Francis inquiry found ‘An institutional culture which ascribed more weight to positive information about the service than to information capable of implying cause for concern.’

'National initiatives were put in place on treating people with dignity and respect and involving people in decisions about their care and treatment.'

From the early 2000s until the middle of the past decade there was a huge amount of work both at national and local levels to ensure patient voice and how people experience services were far more central to how the NHS runs. National initiatives were put in place on treating people with dignity and respect and involving people in decisions about their care and treatment. Large-scale patient surveys were set up to measure people’s experiences so the NHS could understand where improvement was needed. Lord Darzi, in the 2008 report High-quality care for all, put patient experience on an equal footing with safety and effectiveness in the definition of quality and the NHS Constitution, first published in 2009, sets out rights to which patients and the public are entitled. The early years of NHS England continued this focus and in 2014  The five year forward view devoted a whole chapter to ‘A new relationship with patients and communities’.  I remember the huge amount of activity at this time and it felt like real progress was being made.

'But over the past few years it feels like things have gone backwards.'

But over the past few years it feels like things have gone backwards. The proportion of patients feeling involved in decisions about their care or treatment has been falling in recent years. There is still good work going on but increasingly we hear from staff who feel powerless to act on what they are hearing and tell us that patient experience is slipping down the agenda both nationally and locally. Clearly the increasing pressures on the system, lack of staff and now industrial action are having a significant effect on the system’s ability to listen but to not do so is short-sighted and, as we have seen, can have tragic consequences. Yes, services are busy, yes people are stretched but listening to a patient or carer is not a ‘nice to have’ – it is part of the fundamentals of delivering not only care with dignity and respect but also high-quality safe and effective care.

As I read about Martha’s story and the tireless work of her parents to ensure people learn from the events that led to the death of their daughter, I wondered who is not being heard? How many other patients, carers and families are not being listened to but do not have people to advocate for them who know how to make themselves heard?

'At the heart of all this there are disturbing themes around culture, hierarchy, power imbalances and institutional defensiveness.'

At the heart of all this there are disturbing themes around culture, hierarchy, power imbalances and institutional defensiveness. Simply put it is about patient voice not being sufficiently valued. This has to change or it will be just a matter of time before we will hear about the next incident where patients and their carers are ignored with fatal consequences.