Reflections on 15 years of the Point of Care
08 January 2021
Having stepped down as Chief Executive of the Point of Care Foundation last year, I want to reflect on the journey the organisation and I have made and what I have learnt. This is a personal record, my take on our history, the principles behind the work and achievements plus some reflections on changes that have and have not happened over the last fifteen years.
The origins of Point of Care lie in the traumatic birth of my youngest nephew fifteen years ago. In 2005, I received a call from my sister. She had given birth overnight and the baby was in intensive care, she did not know why but she did know ‘something terrible had happened.’ Later we learned he had been deprived of oxygen for a long time when she was in labour, staff had not noticed and when they did, they responded incorrectly and too late.
The baby could not breathe when he was born, he was lifeless. He was resuscitated on the labour ward, then transferred to neo-natal intensive care (NICU) where he stayed for weeks. He is now 15; he has an extraordinary spirit, and is heroically determined and stoic but he has to endure not being able to communicate and being totally dependent on other people. The irrevocable harm he suffered could have been avoided and has changed his life and the lives of his parents and sisters.
For me, the way the senior people in the Trust behaved afterwards made the whole thing even more unbearable. I had read much of the literature on patient safety including interviews with hospital patients who had suffered very severe and avoidable harm, and with staff involved in such incidents. I knew patients often have to fight with hospitals to find out the truth of what had happened to them, and that unless they move house, when they need treatment, they have to go back to the hospital that did the harm, then denied it, and in doing so, sacrificed their trust. I also knew that staff involved in patient safety incidents are invariably suspended from work and turned into scapegoats.
Now it was happening to my family. In the first few hours after my nephew was born, his parents were completely in the dark. He is not their first child, but they had not known he was in trouble until moments after he was born, when an overwhelming sense of panic and chaos had filled the room. In the NICU, he had been put in a cot in a single room, away from other babies, which was baffling. The other babies were tiny and some had visible deficits but there was nothing remarkable about his size or appearance. Why was he in the only single room in the Unit? His parents felt they were being deliberately kept away from other parents. The body language of the NICU staff was awkward, no one would look them in the eye and senior people were avoiding them.
The body language of the NICU staff was awkward, no one would look them in the eye and senior people were avoiding them.
Over the next few months, the Trust did its own investigation into the ‘incident’ as it was termed (a good example of bureaucratic language used thoughtlessly) without telling his parents or inviting them to contribute. Later, after the family had forced them to accept an investigation by external experts, they made promises to keep in touch, keep them informed and be open that they did not keep. One day, my sister heard from a neighbour that the midwife on duty that day had been suspended; eighteen months later she still had not returned to work. Still to this day, my nephew has to go back to the hospital when he needs medical treatment, and although the Trust admitted negligence in court, no one on the staff has ever reached out to find out how they are coping, or apologised.
The Point of Care is the product of whatever alchemy turns rage and despair into something else. In 2006 I wrote a paper titled The Point of Care, requesting funding for a “programme of work on the quality and humanity of care in the NHS.” The programme would aim to “achieve patient-centred care in practice… to enable initially some, gradually all, NHS services to design and implement organisational systems and processes capable of protecting patients from depersonalisation and providing care that is truly centred on the patient.”
The outputs from the work would be led by evidence and practical. The emphasis on evidence was to reflect its importance within medicine. I was determined to ensure the work would not be dismissed as ‘soft’ or fluffy’ and that it would not waste resources advocating interventions for patient-centred care that are not effective.
I was determined to ensure the work would not be dismissed as ‘soft’ or fluffy’ and that it would not waste resources advocating interventions for patient-centred care that are not effective.
The emphasis on doing something practical was to protect others from having the same experience as my sister’s and to benefit patients and families directly. Patients are individual and unique, and the variety of services and settings that deliver medical care is infinite, but it did not seem unreasonable to think it might be possible to develop specific goals for patient-centred care for specific services in specific types of setting. The Point of Care would not be naïve to the importance of policy, but influencing policy would be a second order aim. Our primary goal would be to change practice.
Thankfully, The King’s Fund liked the proposal and funded the work for the first six years, which gave us time for research and dialogue with others, and afforded the rare luxury of time to experiment with interventions we heard about.
The Point of Care’s focus is the suffering patients experience that is caused by some interactions with staff and some aspects of service delivery. Unlike suffering that is caused by illness and injury, or the pain and discomfort that is inevitable with certain diagnostic tests and treatments, insensitive interactions, dehumanising routines and appalling administration that give patients the sense of being diminished as a person are not inevitable.
We have collected countless examples in our work with child and adult services in acute, mental health and community settings. It seems that no service or setting is immune to:
- Patients being left to worry that they have been forgotten because no-one on the staff is responsible for telling them what is happening
- Patients being left to suffer in pain because they cannot attract the attention of a member of staff
- Patients losing trust in the people looking after them because they are told one thing one day and a different thing the next, not because anything about their condition has changed, but because there has been a change in personnel
- Patients being given bad news in front of other people
- Patients being given a life-changing diagnosis as a causal afterthought
- Patients being told they have to comply with a rule for which there is no reasonable justification
- Patients not knowing, and not being able to find out, who is responsible for decisions about their care and how they might speak to them
The evidence of such suffering is there in abundance in patients’ stories. Unfortunately health professionals are trained not to accept stories as evidence. The evidence they accept more readily is from surveys (also abundantly available) but somehow reading that – X% of patients discharged from hospital do not know who to contact should they be worried about their condition; or Y% of patients said they were not able to talk to anyone about their worries and fears – does not bring existential suffering to life and lacks the motivational punch of stories from patients you know and can relate to personally.
There are many reasons why these things happen. The size, scale and complexity of modern health organisations significantly affects relationships staff have with each other as well as with patients. NHS Trusts employ many thousands of staff to look after hundreds of thousands of patients every day of the year. The enormous size of the organisations dwarfs the sense people have of each other: staff work with people they barely know and their interactions with individual patients are fleeting.
In almost every case, if you ask, who is responsible, more often than not, there is not an obvious answer. Relieving pain is a clinical matter but the other problems exist at the interface between clinicians in different disciplines, or between clinicians and support staff or between clinicians and managers. They are a product of increasing medical specialisation and a complexity to service delivery that has been allowed to happen without anyone being tasked with making sure patients do not fall through the cracks.
The reason there is not anyone responsible for patients’ experience is not because professionals are callous. Power – both institutional and professional – and dysfunctional relationships between people at different levels of the hierarchy play a part. But most people who work in healthcare do care and want patients to feel they care about them.
The psychoanalyst and social researcher, Isabel Menzies-Lyth, says that paradoxically, it is the motivation to care that makes health organisations uncaring. We all, as human beings have natural defences that protect us from the anxiety provoked by direct contact with bodies that are disintegrating and out of control; physical disfigurement; psychological breakdown; emotional distress; disease and death. Doing caring work exposes care givers to these ‘taboo’ experiences. She argues that organisations whose primary task is caring for sick and injured people, organise the work in ways that will protect the caregivers from being overwhelmed by anxiety. The result is that the way patient care is organised allows caregivers to detach themselves from the patient as a person. Hence, for example, patients are moved around hospitals, like parcels; individual caregivers do not spend any amount of time with individual patients and do not follow them through their care journey from beginning to end; care is broken down into tasks and divided up between people, so that any one member of staff is ever responsible for a small part of a process, and never for care of the whole person.
You don’t have to be a psychoanalyst to accept the strength of her argument. There is something deeply paradoxical about the dehumanising way in which patients are treated by organisations that are supposed to be people- and patient-centred. Perhaps it is because modern medicine is so successful technically, that patients’ suffering seems to have been pushed from centre stage into the background.
There is something deeply paradoxical about the dehumanising way in which patients are treated by organisations that are supposed to be people- and patient-centred.
Earlier this year, in the first few months of the pandemic, when there was less confidence than there is now in medical treatment of patients with COVID, there was an outpouring of public concern from inside hospitals about patients feeling lonely and patients being separated from their loved ones with stories about doctors and nurses sharing their own phones and Ipads with patients so that they could speak to their relatives. But in normal times, when the value of medical treatment is not in doubt, hospitals are full of lonely patients but no one talks about it, and inpatients wards show very little compunction about exerting control over patients’ access to loved ones. But for those few months it was different: the lack of confidence in medical solutions created a space for the human aspects of patients care to have primacy.
The Point of Care talks about ‘humanising care’ and ‘humanity of care’, to underscore the point that patients are the raison d’être for healthcare. The dual meaning of the name is intentional: point means purpose, patients are medicine and healthcare’s reason for being; and point means place, the ‘front line’ or ‘clinical coalface’ where patients and health professionals interact.
The Point of Care talks about ‘humanising care’ and ‘humanity of care’, to underscore the point that patients are the raison d’être for healthcare.
On the practical front, we look for the best practical interventions we can find to achieve patient-centred care, based on evidence for efficacy. Our criteria for choosing practical interventions came from a systematic review of the literature on the diffusion, dissemination and sustainability of good ideas in healthcare which basically said that although whether good ideas are adopted depends almost entirely on the context, there are few steps innovators can take to help them to stick. They can make sure:
- They are compatible with a systems perspective and are suitable for complex environments
- They describe the intervention in enough detail for people to be able to replicate it elsewhere
- It is flexible and works in different environments
- It has worked and been sustained beyond the place where it first originated
- It has been subjected to external assessment /evaluation
Point of Care’s two main practical interventions, Schwartz Rounds and the Sweeney programme meet the criteria.
Very early in the life of Point of Care, we were persuaded by the evidence on the relationship between staff experience and patient experience that patient-centred care could not be achieved by individual members of staff acting alone. We broadened the scope of work to include evidence-based practical interventions for staff and discovered the Schwartz Rounds (then happening in about 200 US hospitals) and the Schwartz Center for Compassionate Care in Boston, Massachusetts. We visited Boston, and negotiated a licence from the Schwartz Center to pilot Schwartz Rounds (the Rounds) in two UK hospitals, and from there, helped over 220 organisations in the UK and Ireland do them, including medical schools, university faculties for nurse education, prisons and social care.
A Schwartz Round is a one-hour meeting, open to staff in all occupations at any level of the organisation. Ancillary and support staff are not usually invited to meetings with clinicians, but in Rounds people sit together and listen to each other as equals.
The Round is facilitated in a way to ensure it is psychologically safe and attendance is voluntary. Silence in Rounds is not unusual; sometimes, in some places, Rounds are very emotional.
The meetings follow the same format every time: they start with the facilitators reminding everyone about patient confidentiality and the ground rules, then a handful – usually three or four people – take a few minutes each to tell a story about a patient or on a chosen theme, and then the facilitators open the conversation out to include the audience who question, reflect and share their experiences.
Some Rounds have dealt with very traumatic events, such as the Grenfell Tower fire and the 2019 terrorist attacks in London; others are about everyday stories of patient care; still others are communal events that have consequences for everyone in the organisation, like the publication of an inspection report or the junior doctors’ strike.
Every month thousands of staff in the UK and Ireland take the opportunity to participate in a Round where they listen to their colleagues’ stories and sometimes share their own stories. The evidence shows that doing so makes working life more bearable: it reduces a sense of isolation from others that is common; people feel they understand their colleagues better and are better able to communicate with them; they feel more empathy for patients and reconnect with the motives that originally inspired them to work in health.
From the beginning, the most extraordinary aspect of the Schwartz Rounds was the ‘pull’ from people on the ground: Rounds spread because people want to do them. They are not for everyone, but for people who like them, they satisfy a deep need for connection with themselves and with colleagues.
In 2018, a study funded by the National Institute for Health Research showed conclusively that people who attend Rounds regularly suffer significantly less stress than their counterparts in the same organisation who don’t attend them. For methodological reasons, it is difficult to measure directly the impact of Rounds on patients. Theoretically, though, it is not difficult to see that an intervention that significantly reduces staff stress is beneficial for patients.
The Sweeney programme
The Sweeney programme is named after Kieran Sweeney, who was a GP, academic and dear friend who advised the Point of Care at the outset. The programme combines experience-based co-design and patient and family centred care methodologies and teaches skills that are fundamental for patient-centred care. It teaches staff to stand back from their roles and look at services with fresh eyes; to gather intelligence from colleagues and patients’ about their experiences; and to work collaboratively with patients to determine priorities for improvement.
Over the years, we have worked with staff in a wide range of specialties and settings in the UK, Ethiopia, Norway, Canada and the USA. In one of the biggest, and most impactful projects in partnership with The Change Foundation, in Toronto, we introduced co-design methods to community health workers and patients across Ontario. That work led to Ontarian policy-makers taking an interest in the approach and co-design becoming the method of choice for implementing integrated care across the province.
For me, though, the work with the Vermont Oxford Network (VON), led by Bev Fitzsimons, has been the most satisfying, partly because it takes me back to my nephew in NICU fifteen years ago, and partly because it teaches a lesson that I see as relevant to the wider health community.
VON is an established US-based network of 1300 hospitals that collaborate to improve neonatal care with data-driven quality improvement and research. Point of Care and VON complement each other: VON is clinically-led, it has technical mastery of improvement knowledge and skills and a fabulous networked infrastructure for online teaching and coaching. The Point of Care brings the human touch and innovative methods that resonate with NICU staff and parents (whom they call ‘family partners’). Together, POC and the VON team have created co-design teaching and learning materials that are integrated into the internet-based Newborn Improvement Collaborative for Quality through which the NICU community is introduced to them.
In two years, we have seen the experience in some NICUs being made less traumatic for family partners. Together, staff and parents have produced new resources to explain to parents how the NICU works. Staff have understood and accepted that consistency and continuity are paramount and improved how they communicate with parents, and they are doing more to help parents prepare for when the baby is discharged from the unit and well enough to go home.
For me, the lesson from the partnership with VON is that it is possible to change cultures one unit at a time and across a whole system (the neo-natal care system) under certain conditions.
- First, there is a networked infrastructure of support for teaching and learning that clinical professionals trust. In the UK, some medical Royal Colleges support networks like this, but they are exclusive to one community of specialists. NHS Improvement and NHS England have the resources to do it but they do not have the position of trust with clinicians that is needed.
- Second, there are enough clinicians at the point of care with the technical knowledge and skill to do service improvement. The NHS has begun to invest in developing the capability for improvement, but it will take time to reach the point where 10-20% of staff have these skills that is needed.
- Last but not least, the change at service level is clinically-led. Clinical leadership matters because clinicians have close, intimate relationships with patients, with colleagues and with delivery processes.
Sweeney and Schwartz Rounds are both clinically-led. It demonstrates trust in front line staff which is critical, because over the years the system has disempowered health professionals and taken decisions away from them.
Trusting front line staff doesn’t mean being naïve. There is tribalism amongst the professions and vested interests can be dressed up as ‘what’s best for the patient’. Staff need exposure to experiential tools and techniques that change their outlook and develop skills they otherwise lack. But my experience of Schwartz Rounds and the Sweeney methodologies is that they are effective: they touch the hearts as well as the minds of people who engage with them and in doing so change their outlook permanently.
…my experience of Schwartz Rounds and the Sweeney methodologies is that they are effective: they touch the hearts as well as the minds of people who engage with them and in doing so change their outlook permanently.
When I reflect on the Point of Care’s ambitions and its achievements, the ease with which we spread Schwartz Rounds, as compared to the difficulty in persuading organisations to commission the Sweeney programme is striking. The timing for Schwartz Rounds was fortunate. We had done the pilots and proven their worth, long before the NHS woke up to the importance of staff support. Rounds are not costly and they are a comparatively simple intervention supported by strong evidence. They have a counter cultural aspect but they do not challenge the status quo in the way that Sweeney does. Sweeney asks organisations to look through the patient’s eyes at their own workings and to invite patients in to help them improve it. It sounds easy, but it is not. It is slow and difficult work, and it challenges the most basic assumptions about how the organisation conducts business usually and gets things done.
Since Point of Care started, NHS organisations have become much more concerned about staff and their well-being and are actively trying to improve the way they recruit and support their people. But there’s still a long way to go to humanise care for patients. The new duty of candour is enshrined in legislation, but nothing much has changed in the way patients who suffer avoidable harm are treated. The first reflex in NHS trusts is still defensive and senior managers still try to prevent patients and families from finding out what happened.
As I write, my niece, who is 28 weeks pregnant. is in hospital under observation with worries that her pregnancy may be at risk. Every one of the eleven days she has been an in-patient, she has been taken to the labour ward at least once, sometimes more often, and every time she gets back to the ward, she finds her belongings have been shoved into a black plastic bag and she has been moved to new bed. Bizarrely, she has been put on a post-natal ward where she is surrounded by women who have already had their babies and whose partners are allowed to visit. She has not had her baby and is therefore not allowed to see her husband because of COVID regulations. She is worried, frightened and anxious, and being separated from her 18-month old baby and her husband makes it much worse. Most stressful of all, she has had no continuity of communication or care. The consultant in charge of her care has changed every day and every new doctor devises a new plan of care without reference to the previous one.
She has been unlucky to experience a catalogue of avoidable suffering, but it could be different. Let’s take five moments where her trust in the people looking after her has been tested severely and imagine an alternative with a different outcome.
- The care plan: instead of the daily change to her care plan being made without reference to the previous plan, it would change less often and the doctor who changed it would always go back to the previous plan, explain the reasons for the change and answer questions.
- Responsibility. Instead of the silence about who to speak to, at the beginning of her stay she would be told who to speak to should she have any worries or concerns.
- The daily change of consultant. More than one change of consultant would automatically trigger a medical team meeting where a decision would be about who is best placed to be her ‘named’ consultant, followed by a meeting between that consultant and the patient.
- Different rules for visitors: the anomalous treatment of visitors to patients on the same ward would immediately be seen as a problem and put right.
- Frequent change of bed and location. Staff would know that moving patients around the wards can increase anxiety and think twice about the possible psychological effects on the patient before taking the decision. If and when patients have to move, their belongings would be packed into a case kept on the ward for the purpose.
The alternative scenarios are possible. Numbers one and two could perhaps be achieved with ground rules about care plans and patient information, but the key to them all is that the professional team is sensitive to patients’ perspectives and to the importance to them of continuity – of consultant, of communication and of environment – and is on the look out for unexpected or disconfirming information. They know how patients feel about these things and that the service quality can change from moment to moment. They have borrowed the practice of chronic unease from patient safety and are constantly on the look out for unexpected or disconfirming information.
They try to look at the service through the patient’s eyes and keep up to date data on what matters to patients. Sometimes, on a slow day, for example, one or two members of the team will step out of role and shadow a patient for an hour or two and report back to colleagues what they learn. Also, the team has a bank of data collected from conversations with patients and stories (which they will refresh at intervals) that gives them insight into when and how patients feel at risk of falling through the cracks.
All the elements in the scenario would be in place if looking after the patient as a person was as much of a priority to the team as keeping them safe and providing excellent clinical care. In 2008, the government said patient experience (care characterised by compassion, dignity and respect) should be equal to patient safety (doing no harm to patients) and clinical effectiveness as a performance goal. High Quality Care for All set the policy, but in reality patient safety and clinical effectiveness are top priorities, and patient experience is not. Patient experience should have equal priority to patient safety and clinical effectiveness in hospitals (and other health organisations) and reducing avoidable suffering should be a performance goal. Were that to happen, it would bring into being the structures and processes – the policies, reporting arrangements, protocols, staff training and investment – that gradually, over time, change cultures and protect patients.
Health professionals want to deliver exemplary care and are exceptionally good at solving practical problems but we cannot rely on individuals acting alone. Patients are the reason for healthcare and we need to bring to life the scenarios that can produce better outcomes.