by Dr Zoe Brummell (University College London Hospitals NHS Foundation Trust)
I was working (on secondment) at NHS improvement between August 2017 and August 2018, one project which I chose to work on was the Learning from Deaths programme with the patient safety team. It wasn’t one of my main workstreams but interested me the most out of all the work the patient safety team were doing.
I was invited to attend an event in November 2017 attended by many bereaved harmed families, NHS organisations and representatives from charities. I remember it vividly. The event was overflowing with heightened emotions, sadness, disbelief, anger and pain. I sat on a table with Melissa Mead (@amotherwithout). Her son William died from sepsis in December 2014; his death was preventable. As I listened to Melissa talking and others that day, I remember thinking this is awful, and I was relieved when the day came to an end.
I left with a huge sense of injustice for the families involved, huge respect for the NHS England staff who were leading the patient and public engagement work on the Learning from Deaths programme and several more people to follow on Twitter. As my time continued at NHS Improvement, it became obvious to me that many policies, programmes and workstreams which are launched, with good intentions, do not reach their full potential. I wrote up the notes from the December 2017 ‘Learning from Deaths – one year on’ and collected ‘good practice’ Learning from Deaths case studies from trusts and I wondered who is actually reading these and does anyone who actually works with patients and their relatives know that this programme even exists.
I attended an NHS Improvement event in the spring where I heard James Titcombe talk about his experience at Morecambe Bay. I felt ashamed and angry that a grieving family had to go to such lengths to try and find the truth. I read his book Joshua’s Story and I thought one person has done more to improve a hospital than an entire management team.
I read Sara Ryan’s book Justice for Laughing Boy: Connor Sparrowhawk – A Death by Indifference and this really confirmed to me that nothing will change without the involvement of bereaved relatives. (I wonder if Sara would argue that nothing changes even with the involvement of bereaved relatives).
I read more and more about the outcomes of various enquiries such as Morecombe bay and mid staffs and thought is anyone in the NHS actually learning, is change really happening or are the same mistakes happening over and over again. It all seemed awful and terribly disrespectful to the patients who died and their families who thought things might change.
At around this time I was in conversation with my supervisor for my next job at University College London Hospitals in Perioperative Medicine, who asked if I would like to undertake an MD and advised that it could be about something that I was interested in and didn’t have to be directly related to perioperative medicine. I straight away thought I would like to evaluate the implementation of the Learning from Deaths programme, to show that the implementation of health programmes/policy is not done as well as it could be, to try and enable better Learning and Action as a result of patient deaths and to raise the profile of the programme as a whole.
I hoped this research would enable the Learning from Deaths programme to be successful, to ensure that learning and meaningful change occurs when a patient dies due to a preventable cause and to inform improvements in the design and implementation of future health policy.
There was no doubt in my mind that I would need to form a steering group involving bereaved harmed relatives and that this would need to be done before I had too many fixed ideas about the design of the study. My experience at NHS improvement had taught me that involving bereaved relatives was crucial to making this research successful, to ensure that their voice was heard.
I spoke to Marie Boles who was heavily involved in the National Learning from Deaths Relatives steering group to gain knowledge from her experience and she enabled me to attend one of their steering group meetings, where I first met Rosi Reed, Josephine Ocloo, David Smith and Peter Walsh. I knew that setting up the group was the right thing to do, even if it might not be easy. I also felt strongly that there should be a wide range of individuals involved in the group including those who might not have the same baseline views and beliefs as me and could be viewed as difficult to work with. I appreciated that this might make running the group more difficult for me but did not appreciate that it might impact on other members of the group.
My experience at the event in November 2017 and what I had seen on Twitter by the increasing number of bereaved harmed relatives that I had come to follow made me very apprehensive about our first meeting. I was concerned about anger directed at me and also about doing more harm than good. My anxiety was lessened by the involvement of one member of the group who was not a bereaved harmed relative but was a retired nurse by background who had worked on the Learning from Deaths policy in a hospital.
Again looking back, I regretfully did not appreciate that involvement in this group might be difficult for her. I had lots of uncertainty about how we ‘should’ introduce ourselves and the reason we wanted to be involved to the group and uncertainty about how long the meeting should be and would everyone be okay with setting ground rules, etc.
Involving family members has (I hope) helped to ensure that this work is relevant to the people who are truly invested in making it successful. It has confirmed to me the importance of involving families in this type of research and highlighted the tokenistic nature of much patient and public involvement work. The group has told me that I needed to involve bereaved relatives in the research interviews (which I wouldn’t otherwise have done) and have helped to ensure that this is managed sensitively. Having Dorit Braun help revise the first paper looking at Learning from Deaths reports was incredibly useful, to ensure that it was meaningful to harmed bereaved relatives.
I have personally enjoyed working with several of the group members and they have spurred me to carry on despite obstacles (such as lack of funding) and the ever-present pressure of clinical work.
Some people are easier to work with than others; this is true for all work. Not everyone involved in the group is able to contribute at the same level, but I still believe that all people have the right to be heard and to contribute where they can. However, I am still not sure that this is the best thing for the group as a whole. An additional difficulty has been finding funding to ensure that I am able to run meetings as frequently as I would like to. I have spent many, many hours writing grant applications for patient and public involvement, only to be rejected.
It is a tragedy that the Learning from Deaths programme board closed (following a final meeting in June 2019) and that much of the oversight of this programme has been drastically reduced (apparently absorbed into the medical examiner programme). I personally feel that it was easier for the new Secretary of State for Health to pretty much close this programme, but IT WAS THE WRONG THING TO DO! We the frontline NHS staff have NOT learned from deaths; mistakes will be repeated and the harmed bereaved relatives involved in establishing the Learning from Deaths programme such as those at the November 2017 event have been further harmed by this. Absolutely despicable to raise hopes that things will change and to then throw it back in their faces.
I hope the Learning from Deaths: Learning and Action work will raise the profile of the Learning from Deaths programme and help ensure oversight is fully reinstated. I hope we can try and establish how individuals and organisations can best learn from deaths and the best way/ways to ensure change occurs to prevent future deaths. I hope we can help the individual NHS hospitals involved in interviews to strengthen their Learning from Deaths programmes. I hope lessons are learned about how best to implement healthcare programmes/policies. I hope I have undertaken meaningful engagement with harmed bereaved relatives and that we eventually produce work the group is proud of.
On the whole other healthcare staff that I speak to (Mainly junior doctors, nurses and consultants) are very interested in this work and usually embarrassed that they have never heard of the Learning from Deaths programme (which no-one I speak to has). They are also more often than not unaware of what happened at Morecambe Bay or Southern Health. It is not that they don’t care, but that they haven’t had the time to find out or even known that they needed to find out about these things. Even before the Coronavirus pandemic, frontline staff are snowed under by learning how to do the clinical and non-clinical aspects of their job, postgraduate exams, continuing professional development, appraisal and mandatory training.
I wish Making Families Count could talk to final year medical, nursing students and midwives and/or to midwives, doctors and nurses within 5 years of qualification. These are the people who you need to catch before their ideas become too fixed to make them understand the importance of involving families both before and after a patient dies.
I really, really feel that training frontline staff who actually do the majority of looking after the patients (not clinical leads or quality and safety staff or board members or other NHS paper pushers) is the key to better family experiences. NHS staff, especially those at the beginning of their careers really do care and do want to go a good job and want to support families, but they don’t always know how to do this.
Published 2 February 2021