The panellists for this webinar were:

• Dr Henrietta Hughes, Patient Safety Commissioner for England
• Jono Broad, Patient leader and a member of the South West Personalised Care Team
• Helen Hughes, Chief Executive of Patient Safety Learning
• Tracey Hanson, Patient Safety Partner at Central and North West London NHS Foundation Trust

The session began with panellists sharing their reflections on the past year of patient engagement for patient safety, considering where there has been progress and what they see as the current barriers to that process. They then moved on to talk about what needs to happen in the next five years to ensure patients are effectively engaged for patient safety.

The panel then discussed some questions posed by participants in the Microsoft Teams chat, including:

• How can it be made simpler for patients to share their experiences and what support is available?
• How can patients best engage and raise concerns around clinical guidance and good practice?
• How best to approach seeing patients and family members as part of the multidisciplinary team? One participant highlighted that patients can often find this experience intimidating.

Other comments made in the Microsoft Teams chat of this webinar included:

• A bereaved parent stating that there still need to be dramatic improvements to patient safety and duty of candour for families.
• Several participants raising concerns about recognition of patient safety concerns relating to thyroid conditions. There were specific concerns about access to Liothyronine (a synthetic form of the thyroid hormone T3). There were also concerns raised about delays in diagnosis and dismissal of patients concerns.
• Concerns about access to information for patients and carers and how digitisation may exclude some patients.
• There was some discussion about the pros and cons of having patient representatives on the Boards of organisations and what is needed to make this work.
• Concerns about how the Royal College of Gynaecologists has responded to issues raised by female patients in regards to avoidable harm during outpatient hysteroscopy procedures.
• Concerns about the patient safety impact of industrial action by healthcare professionals.
• A question was raised about support for a UK Sunshine Payments Act, increasing the transparency of financial relationships between health care providers and industry.
• Concerns about the safety of 12 hour shifts.
• Comments on the variation of roles and responsibilities of different Patient Safety Partners across organisations. 
• Discussions about the roles, benefits and challenges of having Family Liaison Officers at healthcare organisations.
• An issue was raised about whether the Women’s Health Strategy has received enough attention and focus from the NHS.
• Concerns about the NHS being underfunded.
• The benefits of using a restorative model of facilitation to avoid retraumatising patients, families and staff.
• The importance of being able to check the accuracy of patient records of safety.
• Issue of patients who have been harmed by PIP breast implants and the lack of attention their concerns have received.

If you saw a news item announcing that you could now book online to have a face-to-face meeting with a person from your bank, or to visit a kitchen showroom, you’d find it bizarre. You’d be asking, “Why is this newsworthy?” Yet week after week I see headlines trumpeting how wonderful it is that patients can now make an online booking for an outpatient appointment, or something similar. These new technologies have misleading names such as ‘patient engagement platform’[1] when actually they are simply an online appointments application.

Why do organisations use terminology that is so misleading? It’s a problem because many patients really do want to be engaged in their care, yet find the whole system opaque and generally impenetrable. Headlines like this make the promise that patients can have more involvement in their own care, then fail to deliver on that promise. 

The NHS has even got a way of scoring how involved patients are in their own care, called the Patient Activation Measure (PAM)[2]. It is the top rung of a ladder of patient involvement that starts with patient engagement, then moves up to patient empowerment. Sadly, the PAM seems to be almost invisible when one looks at NHS plans and progress reports—perhaps this is illustrative of the fact that so few parts of the NHS really manage to involve their patients adequately. Many papers have been written on the benefits of involving patients in the own care, generally pointing to the better health outcomes, better care experiences and reduced use of healthcare resources of engaged patients (Hibbard and Greene, 2013)[3].

Patient engagement in digital health attracts no fewer benefits and potentially has even more. ‘Co-design’ and ‘co-production’ are terms used very heavily these days to explain how the end users of a solution ought to be involved in its early design, development, prototyping and pre-launch testing. Despite NICE mandating this through its Evidence Standards Framework[4], it still happens far less than it should. Why is this?

Digital health innovators are in a catch-22 situation. They want to pilot their solution to gain access to patients and show evidence of impact, but often they are not given that opportunity unless patients have already been involved in the genesis of the solution. That is not always possible as these innovators (many of whom are originally from outside of the health and care domain) have no knowledge about how to find and engage with patients or end users. 

In my opinion, one of the key things that NHS England ought to be doing via Health Innovation Networks (HINs, formerly called AHSNs [5]), is helping digital health innovators access appropriate patients who can help them to design and develop their solutions. By working in a collaborative way, these patients are not only going to be potentially supporting their own wellness journey, but that of thousands of other people too. The patients involved should represent multiple sectors of the population and embody the principles of the Core20PLUS5[6] programme in terms of reducing healthcare inequalities and improving access to digital therapeutics. 

NHS organisations have recently been encouraged to recruit Patient Safety Partners (PSPs)[7]. This is a new and evolving role developed by NHS England to help improve patient safety across the NHS as part of the new Patient Safety Incident Response Framework (PSIRF). The NHS Patient Safety Strategy includes the ambition for all safety-related clinical governance committees (or equivalents) in NHS organisations to include two PSPs by June 2022, and for them to have received the required training by June 2023. Anecdotally, this seems to be running around a year behind schedule. From a review of the job description, the PSP appears to be a policy and governance oversight role. PSPs might have been a much more valuable addition to the NHS if they had been asked to become involved in the creation of safer tools and therapeutic services that patients would eventually use. An opportunity missed, but NHS trusts could change this themselves in the future if they wished to. 

From my recent interactions with the NHS as a patient and carer, I can honestly say that patients and their needs are not at the centre of the services provided. It is really centred around staff–their availability, skills and capabilities, and their ability to effectively communicate with each other and their patients. We are a long way from value-based care,[8] in which health and care providers are incentivised to give their patients the best outcomes possible.

Until the financial levers of the NHS are aligned with the interests of patients, and the huge benefits of digital solutions are factored into that, patient care in the NHS will sadly remain sub-optimal.

References

1 Gateshead Health NHS launches innovative digital patient engagement service. Gateshead Health NHS Foundation Trust website, 29 August 2023

2 Patient-centred intelligence: A guide to patient activation. The Strategy Unit, 18 November 2019

3 Hibbard J, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013;32(2):207-214

4 Evidence standards framework (ESF) for digital health technologies. National Institute for Health and Care Excellence, 9 August 2022

5 NHS and Government back AHSNs to continue to lead innovation, under new name. The AHSN Network, 26 May 2023

6 Core20PLUS5 (adults) – an approach to reducing healthcare inequalities. NHS England, 10 November 2022

7 Appendix 5: Patient safety partner role description. NHS England, 24 June 2021

8 Hurst L, Mahtani K, Pluddemann A et al. Defining value-based healthcare in the NHS: CEBM report. Centre for Evidence Based Medicine, 2019

Hi Derek, thank you for speaking to me today. 

Firstly, can you describe the attitude of managers and senior clinicians at the Trust towards your family after Harry’s death?

Leaders and staff at EKHUFT were closed off to us from the beginning. At every step, it very much felt like they were saying, “There’s nothing to see here.” Looking back, I realised very soon after Harry’s birth that we needed to start documenting what was happening because the Trust was not being honest. When I arrived at the hospital, we asked a nurse for the name of the doctor who had overseen my daughter-in-law Sarah’s care, and who my son Tom had expressed concerns about. The nurse told us, “You can’t have that information, it’s confidential.” At that point I started photographing Sarah’s notes as I wanted to make sure we had a record.

Once the Trust’s internal investigation into Harry’s death started, they told us they couldn’t talk to us while it was ongoing. When we said that we wanted to contribute, we were totally shut out. It was upsetting that the investigation was used as a reason to avoid engaging with us, but we allowed them to get on with it for four months until they released the root cause analysis report into Harry’s death.

We were offered a meeting at the Trust in March 2018, so we requested to see the report beforehand. After initially saying they would just show us the report at the meeting, they eventually agreed to send us a hard copy by post, saying they couldn’t send it by email. When we finally got to read it, the report was full of errors and just didn’t add up. At the meeting, it became clear that we knew more about their report than the consultants in the room did. They were totally in denial that Harry’s death could have been avoided and were told that there was no way it needed to be referred to the Coroner.

I couldn’t put my finger on exactly what was going on, but I just knew something was wrong with the way Harry’s death was being treated. I began to suspect that what happened to us had happened to many, many families before us—the Trust had avoided taking responsibility and failed to make referrals to the Coroner for years, saying that baby deaths were ‘expected’. Their argument that Harry’s death was expected was that they didn’t have to factor in anything that happened more than 24 hours before they withdrew life support. Later we found that, on their internal notes, Harry’s death was described as an unexpected outcome.

It is undoubted that there had been a cover up in the maternity department for many years and I don’t think anyone would deny that now. To quote the Kirkup report, “This pattern of behaviour by the Trust, clearly evident in this case, recurred in many others that we examined. It included denying that anything had gone amiss, minimising adverse features, finding reasons to treat deaths and other catastrophic outcomes as expected, and omitting key details in accounts given to families as well as to official bodies. Although we did not find evidence that there was a conscious conspiracy, the effect of these behaviours was to cover up the truth.”

When it came to Harry’s inquest, the Trust didn’t expect or want it to happen and were obstructive throughout the process. When the Coroner suggested that it should be an Article 2 inquest, the Trust disputed it, arguing that it didn’t even come close to the criteria, which was obviously untrue.

If the hospital had been upfront with us about what had happened in Harry’s case right at the beginning, we would have been able to forgive the staff and move on. But they didn’t do that. Instead, it felt like a battle from day one and I had to force myself into areas they did not want me to look.

At times, I have been painted by Trust staff as a trouble maker. The Trust’s Chief Executive had to apologise to me after writing to our local MP Sir Roger Gale that I was trying to “undermine the reputation of the entire hospital.” This was in response to a letter Roger wrote to the Trust when I raised concerns that they were rating their maternity department 10/10. When NHS Resolution finally investigated, they found that the Trust was actually only scoring 6/10, and the Trust had to repay the large rebate the maternity department had been awarded for their self-audited high score.

How were you able to keep pushing for answers in the face of the Trust’s attitude to your family? 

As Harry’s grandfather, I was one step removed from the situation. That enabled me to stand back and look at what was going on, to ask questions and raise issues that newly bereaved parents would struggle to raise. I call it ‘the grandparent effect’, and it made a huge difference in this case. I was able to be an advocate for Harry’s parents Sarah and Tom, who were obviously severely affected by losing their baby.

I looked into the various reviews and audits the maternity unit had been through, and kept uncovering more evidence. The Trust was lacking in so many areas—I dug and dug and with every layer of the onion I took off, I found more rot beneath.

I feel it’s so important to share what we’ve been through and what we managed to achieve by not backing down. Once the inquest was over, I learned how to set a website up and published Harry’s Story. I wanted to collect all the information and evidence we had gathered in one, accessible place.
I’m still working with EKHUFT now, trying to help them make improvements and deliver Bill Kirkup’s Reading the Signals report, but there’s still such a long way to go.

How easy was it to find out which organisations you could refer your concerns about Harry's care to?

The Trust left us to our own devices, so I took any route I could to try and find out the truth about what happened to Harry. I went to many organisations such as AvMA and kept being told, “Yes, we hear of these things happening, have you tried X organisation?” We were being sent from pillar to post, but kept trying to find out how we could take it further.

I happened to have a relative working for an unrelated department of the Care Quality Commission (CQC) and she recommended that I make a report to the CQC. It was an uphill struggle to be heard by them and I initially found that they really didn’t want to engage with me. They eventually, after 10 months, got back to me saying there was nothing for them to investigate, and at that point I replied by copying in Professor Ted Baker, then Chief Inspector at the CQC. At that point, things started to change!

Although the CQC eventually started to engage with us, I’m struck by how we were expected to go to them. We were invited to a meeting in London—we paid our own train fares and Tom had to take a day off work, which is difficult as a teacher. 

Were there individuals who engaged with you and your family well? What was it about their response that was positive?

The individuals who engaged well with us were honest and listened to what we had to say. The Director of Maternity for Healthcare Safety Investigation Branch (HSIB), Sandy Lewis, was so helpful. She would call me with regular updates and communicate how much Harry’s case mattered to her. I could sense her commitment to seeing change. 

HSIB in general were exceptionally helpful, but there were hurdles to overcome there too. Harry was born in November 2017, but HSIB only had the remit to investigate cases from April 2018. I spoke with various individuals at the organisation including the medical director, who was keen to take on Harry’s case as he recognised its seriousness. They eventually found a way to take it on, by carrying out a learning investigation rather than a maternity investigation.

The coroner’s officer was also fantastic—she listened and was so encouraging. I was constantly emailing new evidence over and in every email I would apologise for the extra reading, but she was so affirming and would say, “Send me whatever you want, I’ll make sure the Coroner sees everything.” The Coroner was also very respectful and told me what a difference I was making; after Harry’s inquest, he said to me, “You’ve done a good thing. Without you this wouldn’t have come before me Mr Richford.” I get very emotional thinking about it even now.

You and your family suffered a terrible loss. How did the responses of the Trust following Harry's death affect your family further?

We’ve discussed this as a family before. The loss of Harry was on one level, but the denial and the way we were treated by the Trust was almost worse—I would say it added at least 50% to the trauma. The approach taken by the Trust was to deny, delay and defend, and the damage that has caused us as a bereaved family is immense.

Have you seen any positive change in how bereaved families are treated by the system?

One positive move is that I was recently involved in the panel to appoint the new Chief Midwife for England. It was a privilege to be part of the process, and it felt like being told, “You are welcome at this table.” So maybe we are making a difference, but progress is far too slow. 

For patients and families, the cost of engaging is far more than it should be, both emotionally and financially, as I mentioned earlier. It’s only because I run my own business that I was able to do what I did. I spent hours and hours investigating Harry’s death. We need the NHS to actively help make it easier for people to engage, and to overcome barriers such as financial cost and working hours. 

During our first meeting with the CQC, I realised that we had access to information that they didn’t—for example, they weren’t aware of a Royal College of Gynaecologists (RCOG) report about EKHUFT that was referenced in the Trust’s board papers. I had done the legwork to draw all the evidence together, which none of the statutory organisations had done. Eventually the CQC agreed to prosecute the Trust for unsafe care and treatment. The prosecution was successful, and the evidence we had collected contributed significantly to that.

Lots of families whose babies have died due to harm in or after labour get in touch with me, and their experiences tell me that bereaved families are still being treated with suspicion and a lack of care. I recently discovered that some of the families who took part in the EKHUFT Kirkup investigation—and whose cases featured in the final report—are having to go through a whole new investigation process to claim compensation through NHS Resolution. That means reopening case notes and revisiting yet again the harrowing events that led to the deaths of their babies. The level of trauma this will cause for parents who had hoped the inquiry would bring the justice they need is huge. It is yet another example of how the system is not designed to support victims of harm, and how it fails to place compassion and dignity for patients and their families at the centre of pathways and processes.

What do we still need to see change in how organisations respond to families when a loved one dies due to avoidable harm?

We need people like me (but not me!) at the top of the NHS—‘real-life’ people who can represent the patient perspective at local board level and right up to the top of the NHS. Most of the people who are currently in leadership have only ever worked for the NHS or have worked there for years, and they don't know any other way of working. There’s an extent to which NHS leaders are institutionalised—they accept the foibles of the system as normal. In the face of serious patient safety concerns many seem to simply say, “No, that’s not what goes on here.” We need leaders who are upfront and honest and will say, “We made a mighty mistake and we’re sorry. We’ll do something about it.”

We also need to see trust leaders being held to account. During our experience, we heard the phrase, “the Trust has done this,” a lot, with no individuals taking ownership of actions and decisions. Ultimately, people in leadership were responsible for so many of the lies we were told, but they never had to answer for that. In any other business, people would be held to account, but I am concerned that NHS leaders are allowed to do whatever they want. If this doesn’t change then very little else will.

You can read more about the investigations into Harry’s death and Derek’s work to improve the safety of maternity care on the Harry’s Story website.

This video has been produced in support of World Patient Safety Day 2023 and the chosen theme of 'Engaging patients for patient safety'. 

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Share your views

Do you have experience of campaigning for patient safety improvements? What advice would give to other campaigners? What would you say to clinicians wanting to work with people who have lived experience?

Perhaps you work in health or social care and are passionate about collaborating with patients and others to improve care? Can you share an example of how working with others has improved safety?

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• Information on who lives in the most deprived areas – for example by age, ethnicity and education.
• General principles to consider when developing communications and engagement materials for people living in deprived areas.
• Guidance to use when communicating about specific services – for example accessing GPs or mental health services.
• Considerations regarding opportunities to use communications to improve interactions between healthcare professionals and patients living in deprived areas.
• A communications and engagement checklist to use when developing materials.

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When I joined Patient Safety Learning in 2019 I was shocked to discover there are 11,000 preventable deaths each year in the UK due to unsafe care. And deaths of course are not the only measure of harm. Unsafe care can also leave patients with chronic pain, psychological trauma, permanent damage and life-limiting repercussions.

My role includes proactively seeking opportunities to engage, collaborate, listen and create content that will help to influence positive change around key safety issues. I work with patients, researchers, clinicians, charities, healthcare leaders and families who have an interest in patient safety and reducing harm in healthcare. It is always a privilege speaking to such a range of people driven by a desire to improve outcomes.

Comms people like me often focus on making sure their content connects with key stakeholders, but my work has increasingly become about connecting stakeholders with one another. I mean this in both the traditional sense of introductions and also in the way I facilitate and create content. Because when it comes to those involved in patient safety, it has become clear to me that you are destined to fail if you don’t collaborate. If key voices are missing from around the table, your solutions will never be as whole or effective as they could be.

So why doesn’t it happen more? Why don’t patients, frontline staff, decision makers and researchers just work together to approach safety issues with combined wisdom and insight? 

5 common barriers to collaborative working in patient safety

Defensiveness

When patients, relatives and campaigning organisations seek answers and to share their experiences and insights around safety, they are too often met by a wall of defensiveness. Most of the time, these people are reaching out trying to help the system prevent harm from occurring. They are offering their time and input; it should be welcomed. If the response to this is to dismiss, deny or shut them out, their desire to work with the system can be replaced by a new sense of anger, frustration and injustice.  

Anger

If people are consistently shut out of key and central conversations around patient safety of course they will become distrusting of the system, of course they will want to advocate loudly given any opportunity, of course they will want to call out the treatment they have had. This can influence the ferocity with which people engage with leaders and clinicians via public channels like podcasts, online conferences and social media. Unfortunately, this can reinforce a fear of inviting people in, even among those clinicians who want to hear from patients and be informed by lived experience.

Lack of time

Even when patients, clinicians and others do manage to come together, time often constrains the effectiveness of conversation. There is little opportunity to provide background, introduce individuals fully, understand their experiences and motivations, and establish shared aims. Lack of time to communicate and connect at the start of a collaboration can create very rocky foundations for what should essentially become a ‘team’.

Fear

We know from the NHS survey that many staff still do not feel safe to speak up when they have concerns. While other industries actively promote and welcome individual insights and wider conversations around risk and system safety, healthcare lags behind with individuals fearful to talk openly about avoidable harm or to share learning when things have gone wrong. Leaders need to walk the walk when it comes to sharing failures with candour, taking action to prevent future harm and developing a culture where staff feel safe raising concerns that, if acted on, could be life-saving. Strong and respectful lines of communication between the frontline and leaders have to exist to make sure no one is frightened to speak up for safety, and valuable insights do not get ignored. Leaders should also be consistently modelling and evidencing the value of patient engagement for safety, so that frontline staff feel inspired and safe to follow their lead.  

Absence of proactive engagement

At Patient Safety Learning we do a lot of proactive engagement work. Because we understand the value of the insights and knowledge that exist outside of our team. And honestly, it’s not difficult. People respond really well to being approached in this way – often commenting on how refreshing it is to be invited in and to be heard. It shouldn’t be refreshing though, reaching out to those who have expertise outside of your organisation should be a given. The healthcare system should be investing time in actively seeking out and contacting researchers, patients and campaigners who can help them understand the bigger picture when it comes to patient safety issues. And not just when harm or inequality has been highlighted. It needs to be interwoven as a preventative measure, a way to manage risk.

4 ways to support collaboration in patient safety

Make space for each other

We all know resources are stretched but collaborating for patient safety takes time. Making time to listen to a patient’s experience is important. You may need to listen several times because that is part of making space for people at the table and being reminded that the human impact should be core to any safety project. Listening will help you understand motivation and any anger present, and respond with compassion and hopefully a desire to make a difference. Listening to the clinical perspective is equally important, we need to allow time to ask questions, translate medical terminology into plain English and for clinicians to explain the challenges they face in delivering safe care.

Keep an open mind

Constantly being dismissed by the healthcare system as a patient or campaigner can take its toll on your trust of individuals. But to move forward, an open mind is needed because there are people who will share your aims, motivations and are equally driven to help. Just as the system needs to let people in, those who have been harmed by unacceptable past interactions need to be open to those who genuinely want to collaborate moving forward. Not always easy to rebuild that faith but it opens up more opportunity for progress.

Be curious

Asking questions is one of the most powerful communication tools. It shows respect, interest and a desire to learn from others - three key components of good collaboration. If you want to know what the barriers are to someone implementing change – ask. If you want to know how an experience made someone feel – ask. If you want to know what each person in the room wants to achieve – ask. If you want to know how you can help – ask. If you’re not asking anyone any questions – ask yourself why!

Invite people

Use your channels to start conversations and ask people to share their insights at the beginning of any project. You will never have all the answers (and be wary if you think you do), reaching out to others will give you more of a chance of finding them.

My reflections come from a communication perspective and from witnessing the power of collaboration when people come together for safety. We need everyone to speak up for safety but, more importantly perhaps, we need to acknowledge the time and space that is needed to really listen to each other.