I’ve been watching the desperately sad story unfold of the awful, untimely, preventable death of a young man with learning disabilities. Only those most closely involved can comment on what led to his death. But what happened afterwards has become extremely public.
Having done the job I once did, I feel the need to share some thoughts. I know this may provoke strong reactions. But to be silent suggests complicity about unfair discrimination of vulnerable people, lack of compassion and the opposite of openness in how the NHS too often deals with mistakes. And I am not complicit.
The media, including social media, can be a massive force for good. The media can shed light on things that need to be uncovered, especially where the interested parties are far apart. And in the case of campaigning journalists like Shaun Lintern, they can help families eventually get to the truth. Although they really shouldn’t have to.
The NHS is at long last waking up to the fact that the public understand bad things can happen. The public know that the NHS is staffed by humans who, by dint of being human, make mistakes. And that there are risks inherent in almost everything that the NHS does or doesn’t do. They know some mistakes occur because staff are careless or stressed or tired or overstretched or poorly trained or badly led. And they are realistic; they also know that a small number of staff do terrible things deliberately. But the NHS still needs to appreciate that the public will not accept cover ups.
Below are some of my lessons on running services for vulnerable people, learned the hard way, by experience. And by not getting things right myself all of the time.
- Running NHS services is very, very hard. The hardest part is when things go wrong and patients are harmed or die in circumstances where this could have been prevented. It is what causes those in senior positions, like the one I once held, sleepless nights and to question our own fitness to lead. If leaders don’t have sleepless nights like this, they are almost certainly in the wrong job. Being a decent leader in one of these very hard jobs starts with having respect and compassion for those we serve. And the humility to admit mistakes.
- Leaders in the NHS need to be curious and ask questions. They need to seek the truth, however hard this may be. They should surround themselves with others who are curious too and not afraid to challenge their leader. They need clinicians of the highest integrity with deep knowledge of the care they are responsible for to advise them. And although NEDs and governors who pose difficult questions may occasionally be wearisome, good leaders know that such people are invaluable at questioning what might seem obvious and to upholding core values. I may not always have shown this, but it is what I truly believe.
- Some time after I left, I noticed that my old trust had been criticised for apparently taking too long to complete serious incident reviews. And I recalled my own occasional frustration at the length of time it took to receive outcomes from a review when I was desperate for answers. But now I’m thinking again. Investigating something properly takes time, especially when extremely distressed people are involved. Those investigating must be open minded and objective. They need to be released from other duties. They must not take everything they are told at face value. And they need the remit and backing to do whatever is needed to get to the facts. Timeliness is important, but not at the expense of uncovering the truth.
- I recall an attempted homicide by a patient. We were so concerned to find out whether we risked a recurrence that, rather than an internal investigation, we immediately commissioned a specialist independent organisation to investigate and report to us, with no holds barred, on the care and treatment of this patient. This informed us about some changes we needed to make. This approach was later commended by the coroner. But when a statutory independent review was eventually carried out more than three years after the incident, the reviewers devoted space in their report to criticising us for having commissioned that first report, even though they broadly concurred with the findings. There is no rule book for NHS leaders. You must work out what to do yourself. And often only learn with hindsight whether you got a decision right or wrong.
- The media onslaught that can occur after a serious incident can be all consuming and deeply distracting. The worst thing that can happen is that you are diverted from the real job, of providing good care and rooting out any that is less than good, into so-called “media handling”. I have been very close to getting badly distracted myself on occasions. My saving grace was probably having been a nurse first. But I don’t think that being a clinician is by any means essential to being a good NHS leader. Caring about what happens to patients is the only essential qualification.
- Apologising is never easy. But it can mean so much. Apologies should be sincere, whole-hearted, unqualified and platitude-free. They may not be accepted initially. They may have to be repeated, sometimes many times. The hardest meetings for me and those I worked with during my 13 years as an NHS CEO were with families whose loved ones had come to harm in our care. But I am so grateful to those people for giving me the opportunity to listen really carefully to them and to apologise to them in person. It may take a long time to achieve such a meeting, and sometimes several are needed. The effort is really worth it.
- The NHS is a microcosm of society and is institutionally discriminatory towards those who experience mental illness or have a learning disability. This is manifest in poor staff attitudes, low expectations, inadequate investment, silo thinking, paucity of data including comparative benchmark information on incidents, and the negative way the rest of the NHS treats those who raise concerns about such things. I’m doing my tiny bit as a volunteer to improve matters but there is so much more for all of us to do.
- Talk of “numbers” without benchmarks and other good quality comparators can also be a distraction. Every unexpected death of a vulnerable person needs to be investigated to see if it could have been prevented. And that takes resources, which are in short supply in mental health services these days where the brunt of cuts have been made despite all the rhetoric about “parity of esteem”. Coroners are also overwhelmed; it often takes years before inquests into such deaths are completed, which is agony for the families.
It really shouldn’t matter whether the person who died was young, talented, beautiful, courageous, funny or anything else. They were a person who mattered. My heart goes put to anyone who has lost a loved one, and especially to those whose deaths were in some way preventable. You have to live with “if only” for the rest of your lives.
And that is the hardest thing of all.
If only, yes, if only I had fought harded to have my voice heard, my son might still be alive too!
Thank you very much for sharing this excellent article, which clearly highlights your personal empathy and compassion for all who suffer from a medical error. It is written with integrity, knowledge and understanding. I lost my 10 year old son, as a consequence of medical negligence, in 1990 and then endured a cover up, which continues to this very day. :”(