Time for a reset on safety? Highlights from day one of the HSJ Patient Safety Congress (18 September 2023)

Summary

The 15th annual HSJ Patient Safety Congress brings together more than 1000 attendees with the shared goal of advancing the national agenda for patient safety across health and social care. In this blog, Samantha Warne, the hub's Lead Editor, captures some of the key highlights and messages from day one of HSJ’s Patient Safety Congress.

Content

How can we reset on safety and thrive in today’s healthcare environment?

Shaun Lintern, longstanding Chair of the Patient Safety Congress and Sunday Times Health editor, opened the Congress by reflecting on the current state of the country and the healthcare service, highlighting the challenges that winter approaching will bring, the recent scandals, ongoing police inquiries, Lucy Letby, crumbling roofs and workforce problems, and asked the question: How can we reset on safety and thrive in today’s healthcare environment?

Closed cultures and restrictive practices

Putting mental health at the forefront of the agenda, along with the theme from this year’s World Patient Safety Day, ‘engaging patients for patient safety’, the Congress began with a heart breaking but powerful patient story from Sharon Clarke, mother of Ryan.

Ryan is autistic and was detained for 17 years in mental health units despite no crime being committed. Ryan had to mix with violent offenders, spent 3 years in solitary confinement, was at times heavily medicated and at one point was restrained by nine members of staff where he broke his hand. It took years of campaigning to finally get Ryan out, but Ryan is now thriving and happy in supported living. But this is not an isolated case. There are 2000 people with autism and learning disabilities who are currently detained. The Government has said numerous times that they will get them out but it was only Sharon’s tenacity that changed things for Ryan.

A panel discussion followed on how we are letting vulnerable patients in closed cultures down. Professor Joy Duxbury, Professor of Mental Health at Manchester Metropolitan University, spoke about how the over-reliance on restrictive practices when supporting vulnerable people who become distressed is an ongoing and serious concern. Joy highlighted the charity, Restraint Reduction Network, which is working towards reducing reliance on restrictive practices.

We also heard from Chris Dzikiti, CQC’s director of mental health, who said that the watchdog is meeting with chairs and CEOs of providers to ensure they are demonstrating leadership in tackling closed cultures following a series of high-profile scandals. He said clear action plans must be shown to inspectors assessing services, particularly where poor practices have been identified. He told the event:

“If ever we’re going to change the culture of services we need our leaders to be counted on. I say to leaders, CEOs and chairs, if you honestly wait for CQC to come and tell you what’s wrong in your organisation then something’s wrong.”

Regulation of NHS board members and managers?

Next on the agenda was Aidan Fowler, National Director of Patient Safety at the Department of Health and Social Care, who gave an update on the Patient Safety Strategy. He cautioned against the ‘false hope’ of trying to achieve ‘zero harm’ from healthcare, describing it as unachievable. He told delegates: “The dream of zero harm is appealing. It’s what we all want. But it’s unachievable in reality, it’s unmeasurable [and] it carries risk.”

Aidan said what is really meant is eliminating “avoidable harm”, but also described this as “problematic”. He stressed the ambition should be to reduce harm to minimal levels, but said the notion that any provider could claim they had no harm for period of years was “hard to credit”.

He also highlighted the recent Martha’s rule as an example of how healthcare will work with and amplify the family/patient voice and empower people when there is a concern.

Aidan was asked whether NHS board members and managers should be regulated, amid calls for this in the wake of the Lucy Letby scandal. He said:

“I think there are pros and cons to regulation… What I would say is that you just have to be cautious that you do not lead to a disbarring process without the developmental side of regulation, and the support side of regulation. For staff, to support them to do a good job.

“We have seen that there is a gap in patient safety training for boards, which we need to work on, for them to understand and to encourage them to talk about it more.”

Speaking about lessons from the Letby case more widely, Aidan told the congress there was a danger in patient safety of “looking in the rear view mirror”, and said leaders needed to move to a system where concerns “are sensed in real time” and responded to “at first sign of any concern”.

On the panel was Dr Rosie Benneyworth, Healthcare Safety Investigation Branch’s interim chief investigator, and she told the Congress that she felt managers should be regulated, but that it was the wrong question we are answering. “I do not think regulation of managers will stop another Lucy Letby… I do not think we should be jumping on regulation of managers because of Lucy Letby,” she said. “However, I think regulation done well can drive up standards, it can lead to improvements, and it can also make sure that there is an oversight on the national level of people working in the system”.

“Managers are vital in healthcare and are as equally important to a person’s healthcare as a doctor and a nurse.”

Putting patients and family at the centre

One of the streams for the first day was ‘Putting patients and family at the centre’, looking at the gap between aspiration and reality and what we can do to bridge that gap. In the first session of this stream we heard from Dr Dawn Benson and her son Michael, in one of the most touching and inspiring presentations of the day.

Michael has cerebral palsy and learning impairment due to avoidable harm at birth. Michael spoke about the ‘social model’ of disability, which is the understanding that disability is something that is created by society. This is because disabled people face barriers that stop them from taking part in society in the same way as non-disabled people. Michael spoke about the patient’s need to be empowered and how healthcare professionals need to listen to the patient. 

Dawn reflected on how she would have liked to meet the healthcare professionals involved in Michael’s birth to hear how the event had impacted their lives. She rejected the term ‘second victim’ for staff, as she said as a mother she was the second victim, but she said staff were ‘third victims’ and that were multiple victims in a patient safety event. She also described what she felt ‘good’ family involvement looked like, highlighting the ability to ask questions, being an active participant, not wanting compassion but respect, and acknowledging that not everyone has the interpersonal skills needed in an investigation and that organisations need to make sure the right people with the right skills are doing it.

The session ended with a powerful statement from Michael when asked what he thought about the people involved in his birth:

“They are only humans, but they do make mistakes, but they must learn from their mistakes, if not they shouldn’t be in the job”.

Perceptions of working with harmed families

The last session of the morning in the ‘putting patients and family at the centre’ stream was from Rosi Reed and Dorit Braun, from Making Families Count. Making Families Count aims to improve outcomes for families affected by serious harm and traumatic bereavements in health and social care services and offers peer support, training, information, advice and guidance. This session examined the misconception that all families want is someone to blame and the perceptions of working with harmed families. Rosie and Dorit highlighted three key things that families want:

• Openness and honesty – to know the complete and total truth.
• Parity – to be treated as an equal partner in any investigation
• Remediation – to know what will happen as a consequence of learning from the investigation.

Making Families Count have recently developed in partnership with NHS Trusts, the ‘Compassionate Communication, Meaningful Engagement handbook’ for all NHS staff which aims to improve collaboration with patients, their families and carers following a patient safety event.

Dorit and Rosi both shared their personal stories of the death of a family member. Dorit described her daughter-in-law who died during a psychotic episode having been discharged the previous evening. You can read more on Dorit’s story in a blog Dorit shared with the hub: Safer outcomes for people with psychosis. Using her experience, Dorit spoke about the Making Families Count project, Life Behind the Cubicle. The project is working in partnership with Oxford Health NHS Foundation Trust service users, families and carers, and clinicians to develop and test an eLearning resource to enable professionals to properly engage families and friends in a care pathway for someone with an acute mental health episode. 

Patient Safety Management Network

Over lunch, attendees used the opportunity to speak to the presenters, meet others working in patient safety and share ideas, including at the Patient Safety Management Network stand. The Patient Safety Management Network, created in June 2021 and hosted on Patient Safety Learning’s hub, is an innovative voluntary network for patient safety managers and everyone working in patient safety. You can join the Network by signing up to the hub today. If you are already a member of the hub, please email support@PSLhub.org.

Not one size fits all

In the afternoon we heard from Sarah Tilsted from the Patients Association, Professor Mahendra Patel, chief executive at the Centre for Research Equity, and Dr Habib Naqvi from NHS Race and Health Observatory in a session on how health inequities and discrimination are impacting patients and families.

Sarah spoke about the lived experience advisory panel, Patient Voices Matter (PVM). Although from varied backgrounds, the themes coming out of the group were common, no matter what their background, religion, ethnicity: these were lack of accessibility to healthcare, communication difficulties, lack of personalisation. Sarah highlighted six principles of patient partnership, including that services and systems make sure patients are fully informed in a way that patients can access and understand, and that inequalities are recognised and appropriate approaches adopted for different patient groups and communities, identifying and meeting their specific needs.

Professor Patel and Dr Naqvi discussed how research must be more representative and how to make sure people from different disabilities, ethnicities and religions are recruited for research and trials. If we don’t get patient communities involved at the clinical trial stage, this lack of clinical representation means medications and medical devices will not be fit for purpose. Dr Naqvi gave the examples of pulse oximetry during Covid and the drawbacks when using pulse oximetry on darker skin, and a trial that showed a cancer drug behaved differently in black patients. He also told us how the NHS Race and Health Observatory are working on projects such as jaundice testing, closing the gap in maternal mortality and increasing representation in a clinical trial in breast cancer.

Families just want the truth

The final session in the ‘putting patients and family at the centre’ stream was from Dr Josephine Ocloo and David Smith. They shared their own personal experiences of loss and how they became involved in the National Learning from Death’s programme.  They highlighted the four key themes that families want, which echoed what Rosie and Dorit had said earlier in the day:

• Independence and accountability.
• Honesty and compassion.
• Equality.
• Leadership and culture change.

David and Josephine spoke about the importance of open and honest conversations with those people  involved when a patient dies of avoidable harm. Josephine highlighted the key principles that bereaved families and carers should expect after the death of someone in NHS care and voiced her frustration that these principles haven’t been embedded in organisations and that there needs to be a cultural change. She spoke of a current culture of protecting the reputation and entity of an organisation and how the regulators are failing us and that they need to hold corporate organisations to account. 

The power of an apology

The first day of the Patient Safety Congress finished with the James Reason Lecture, this year from Marina Cantacuzino, Founder of the Forgiveness Project. Marina has spent 20 years learning about how people recover and heal, and examines the power of sincere apology and its relationship to forgiveness. This was a fitting end to a day filled with inspiring and at times harrowing personal stories of loss, campaigning for justice and the need for change.