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This blog tells the story of a patient, a relation of Patient Safety Learning's Chief Digital Officer. It explains how the patient was failed by the system, seemingly a system designed to fail when its users need it most. Some of the issues described here are technology-based in nature, but the concepts are easy to grasp. A phrase that another person commented when hearing about this story was "when common sense and compassion are lost, there is no hope left for the NHS". I think we have now entered that territory (sadly). Do feel free to comment or add your own stories below.... The elderly lady who had previously been fiercely independent and dismissive of most offers of care support was declining quickly. It was a bank holiday weekend and her family were desperate for diagnostic support, and managed to track down a Consultant Geriatrician willing to see her on Sunday morning. The Geriatrician was very concerned and wrote an immediate email referring her to the local palliative care team. She confirmed to the anxious family members that this was now an 'end of life' situation and should be managed accordingly although the timescale was not entirely clear yet. In the hours after the Geriatrician left, the patient – let's call her Anne* – declined even more rapidly. The family had managed to get care support in for that night, but in the meantime were struggling to help Anne. They found the number for the local emergency palliative care team. Knowing that the Geriatrician had already made a referral, they were hopeful that help might be available quickly. The person who answered the phone asked for the patient's name, checked their computer system, and said that they couldn't find it. The family explained that the emailed referral had been made several hours earlier that day to the main palliative care team. The emergency responder explained that the two palliative care teams operated separately and had separate software systems too. The referral would not be processed until Tuesday, after the bank holiday had ended. The family asked whether the emergency palliative care call handler could send help anyway and this was rejected. The common sense and compassionate thing to do would have been to have sent help or asked for the Geriatrician's email address to confirm the referral and urgency. Neither of these were done. No help was sent. This story shows just how fragmented systems are in the NHS – two parts of the same locality's palliative care team not able to see each other's information. It also illustrates that while some clinical services may be 24/7, the administrative support that may be key to their use is 'office hours' and that no appropriate 'coping mechanism' to deal with this has been created. Lastly, it shows that the NHS is melting down in terms of how it responds to many aspects of care provision, especially urgent and emergency care. Common sense and compassion are disappearing. When they are gone, I see little hope in the NHS providing the acceptable levels of care that people need and are entitled to. *Not her real name. Related reading on the hub: Patients who experience harm provide stories, but who will really engage with their insights and opinions?

In this blog, Steve Turner reflects on why genuine patient safety whistleblowers are so frequently ignored, side-lined or victimised. Why staff don't speak out, why measures to change this have not worked and, in some cases, have exacerbated the problems. Steve concludes with optimism that new legislation going through Parliament offers a way forward from which everyone will benefit. The scale of the problem The hidden costs of stigmatisation of healthcare whistleblowers are immense. System-wide problems in this area of healthcare are reinforced by a lack of transparency and the failure of accountability. The consequences of this failure have been investigated many times over the years. A seminal case was that of the Bristol heart surgery scandal in the 1990s. This was brought to light by the anaesthetist Steve Bolsin and led to the implementation of a system of clinical governance.[1] This advance in measures to deliver quality, consistent and safe care remains as relevant today as it ever was. More recently, the investigation into the failings at mid Staffordshire[2] highlighted how a ‘good news’ only culture, where reputation management was placed above patient safety, is failing patients. Critically for me the shocking fact is that where staff who blow the whistle can't, or don't, speak out, are ignored or silenced, the onus to expose wrongdoing falls on patients and their relatives. This involves great personal cost. The onus to expose wrongdoing falls on patients and their relatives. This involves great personal cost. This shameful thread of patient-led whistleblowing goes back a long way and has not stopped. Examples where patients, carers or relatives have had to take the lead and blow the whistle include the death of Robbie Powell,[3] Elizabeth Dixon,[4] Oliver McGowan,[5] Claire Roberts and those who died in the Belfast Hyponatraemia scandal,[6] the Gosport War Memorial Hospital scandal,[7] and the investigation into maternity services in East Kent.[8] These patient safety scandals show no sign of abating despite the report on the failings at mid Staffordshire[2] and Sir Robert Francis’ major review into whistleblowing in the NHS.[9] This is reinforced by the 2023 Bewick Review,[10] which is the first of three planned reviews into University Hospitals Birmingham NHS Foundation Trust. This review was commissioned following repeated serious concerns relating to patient safety, leadership, culture and governance, which were initially downplayed or ignored. The full story behind these failings and their significance has yet to fully come to light. Patients have to blow the whistle on unsafe care A stream of healthcare scandals (too many to mention all of them here) have been exposed by members of the public. Key examples include the case of Robbie Powell who died of untreated Addison's disease in 1990.[3] Thanks to the tenacity of Robbie’s father (Will Powell) this led to the clarification of the absence of an individual legal Duty of Candour for healthcare professionals.[11] Despite numerous reports and failed investigations, including one of which put forward 35 suggested criminal charges, the Robbie Powell case remains open with the Crown Prosecution Service (CPS). In addition, the former Welsh Ombudsman and the English Ombudsman are both calling for a public inquiry into the case.[12] Another case concerns those who died at Gosport War Memorial Hospital in the 1990s who were prescribed opioid medicines that were not indicated for their condition. This led to an Independent Review Panel,[7] which took four years and cost £14 million. The Panel found that 456 deaths in the 1990s had "followed inappropriate administration of opioid drugs". In 2019, Assistant Chief Constable Nick Downing, head of the Serious Crime Directorate for Kent and Essex Police, announced that a new criminal investigation into the deaths was to take place and the campaign for justice continues. Other serious issues include premature deaths of people with learning disabilities and autism,[13] which led to the implementation of the learning from deaths programme. On average, the life expectancy of women with a learning disability is 18 years shorter than for women in the general population. The life expectancy of men with a learning disability is 14 years shorter than for men in the general population.[14] There are numerous individual cases that support this finding, many of which were first highlighted by parents, informal carers or relatives. In 2014, the Department of Health and Social Care published a report that found that almost two-fifths of people with learning disabilities died from causes "amenable to good quality healthcare."[15] In 2022, a report by Dr Bill Kirkup into deaths in East Kent NHS maternity services[8] confirmed that the "onus was on patients to raise concerns" because the culture of fear prevented whistleblowers from speaking out. “In every case staff were aware of serious mistakes or wrongdoing but they were unaware of how to raise concerns because those who tried were subjected to peer pressure to be silent and everyone was afraid of the [personal] consequences.” These consequences were exemplified by the experience of the nursing director who was told that speaking up would harm her career. Another significant report is that into the life and death of Elizabeth Dixon,[4] which contains recommendations that apply across the board: "…6. Clinical error, openly disclosed, investigated and learned from, must not be subject to blame. Conversely, there should be zero tolerance of cover up, deception and fabrication in any health care setting, not least in the aftermath of error. (NHSE, GMC, NMC, MoJ) 7. There should be a clear mechanism to hold individuals to account for giving false information or concealing information relating to public services, and for failing to assist investigations. The Public Authority (Accountability) Bill drawn up in the aftermath of the Hillsborough Independent Panel and Inquests sets out a commendable framework to put this in legislation… It should be re-examined. (MoJ) 8. The existing haphazard system of generating clinical expert witnesses is not fit for purpose. It should be reviewed, taking onto account the clear need for transparent, formalised systems and clinical governance. (DHSC, MoJ)…" The amount of evidence and the number of reports that were initiated thanks to the tenacity and courage of patients, relatives, carers and parents, is truly shocking. How can we change this? How many more reports do we need? The only thing we can say with confidence is that lessons have not been learned. Why don’t staff speak out? I was recently asked ‘why don't staff speak out?’ There's very little rigorous research on whistleblowing in health and social care, so I can only offer my personal views on this apparent absence of ethical behaviour. I believe this quote from Margaret Heffernan (Professor of Practice at the University of Bath School of Management) goes some way to explaining this: “I have never encountered an organisation as vicious in its treatment of whistleblowers as the NHS".[16] If anyone has any doubts there are a string of high-profile cases to support it, including the cases of Steve Bolsin, Raj Mattu, Kim Holt, Peter Duffy and Chris Day. When I was asked why staff stay silent my first thought was to say that those who would speak out have all left. Of course, this can't be the full story. So, what are the other reasons? One possible reason is that people who are promoted to highly paid jobs attain these positions because they ‘toe the line’. Organisational psychologists talk about the role of enablers and ‘flying monkeys’ in maintaining this culture. A flying monkey is a psychology term that refers to an enabler of a narcissistic person, a henchman so to speak. Many staff keep their heads down and don't look too hard at what's going on around them. Some commentators see this as a behaviour that is supported by the promotion of toxic positivity. What I mean by this is a culture of talking-up successes, however small, completely ignoring failure, and therefore missing the learning that comes from failure. The widely used phrase ‘rock the boat but stay in it'[17] springs to mind here, especially the empty references to ‘radicals’ and ‘change agents’. This forms part of learning materials that are often accompanied by reams of management jargon and pseudo-science. This leads to a morally bankrupt approach where ‘all is well’ (‘nothing to see here’) and toxic positivity prevails. The belief that no matter how bad a situation is, people should maintain a positive mindset, move on and not mention it, is a way of working that is directly contradicted in these wise words by the late Professor Aidan Halligan: "Run toward problems, especially on a bad day." My views may sound very harsh, especially coming from someone like me who left direct employment with the NHS in 2008. It's important to point out that I believe the vast majority of NHS staff, at all levels from clerical staff and porters to senior managers and chief executives, do their best to work around the bullying and toxicity to deliver safe care for patients. Doing their best despite the prevailing culture rather than being supported by it. Sometimes biding their time and subtly subverting directives that are not in patients’ best interests. For clinicians, the threat of being referred inappropriately to a professional body is ever present,[18] and an environment where the pressure of work is extreme, exhausting and unstainable are also major factors. For many, the prevailing culture also means that the careers of highly skilled accountable, ethical and caring staff are held back through denial of learning opportunities and promotion, and informal blacklisting which is commonplace. There's an army of people ready for change, a huge informal network of highly motivated caring people, which is why I'm optimistic about the future. Why have ‘speaking up’ reforms failed? These are my personal views based on my experience and that of my colleagues. Since Sir Robert Francis’ whistleblowing report[9] there have been several changes designed to improve the situation. These include Freedom to Speak up Guardians (FTSU), the introduction of an institutional Duty of Candour, the ‘Fit and Proper Persons Test'[14] for Board members and the NHS Whistleblower Support Scheme. In addition, the Health and Safety Investigation Branch (HSIB) was set up in 2017 and a National Patient Safety Commissioner was appointed in 2022. Given all the above, why has there not been a reduction in high-profile healthcare failings? In my view there are several reasons. Many believe, as I do, that the approach of the Care Quality Commission (CQC) to whistleblowing is part of the problem. We often learn from investigation reports that the CQC (and other regulators) had been listing problems in their reports for years and yet no meaningful action has been taken. ‘Regulatory capture’ is a serious problem, which is when regulators are adversely influenced by the people they are inspecting. This is often linked to the revolving door of staff who move from health and care employment to the regulators, and informal links which amount to cronyism. This behaviour is something that commentators have noted and which I have experienced myself.[20]. Patients suffer as a result. The introduction of the National Guardian Office and Freedom to Speak Up Guardians in each NHS trust is also problematic. This initiative has an inbuilt conflict of interest, as the Guardians are employed by the trusts themselves. The All-Party Parliamentary Group on Whistleblowing (APPG) has heard from whistleblowers who have been failed by local Guardians, sharing their experiences that have included the disclosure of their identity to hospital management and boards, which resulted in retaliation. The APPG has also heard from local Guardians who were not supported and themselves the target of retaliation after supporting whistleblowers.[21] In addition, something which I find shocking is that the National Guardian Office appears to studiously avoid the word ‘whistleblowing’ in its material and outputs wherever possible. This adds to the stigma around healthcare whistleblowers and is inexcusable. Another lesser-known initiative is the NHS Speaking Up Support Scheme[22] (originally titled the Whistleblower Support Scheme). There is not much information available on this scheme in the public domain. I became aware of the scheme when I was asked if I wanted to apply. Later I signposted several people to the scheme. I learned that although the scheme has benefited some people, for others it appears to have made their situation worse. Through a freedom of information request, and thanks to the intervention of my MP, I have managed to obtain a redacted copy of the evaluation of the pilot scheme which supports the view of mixed results.[23] Having read this report, it is unclear to me why it hasn’t been published and why it was redacted. Particularly as I think (I can’t be sure of course) that one of the redactions is a comment I made. A comment I wanted to be shared. As for the other post-Francis review initiatives, the Kark Review in 2018 on the Fit and Proper Person Test (FPPT) is unequivocal in its findings: "Essentially it [FPPT] does not ensure directors are fit and proper for the post they hold, and it does not stop the unfit or misbehaved from moving around the system."[24] In addition, the statutory current Duty of Candour[25] seems, at times, to be little more than a tick box, with the responsibility for talking to patients often left to the most junior staff. A Duty of Candour is about simply telling the truth and is everyone’s responsibility, not a task to be delegated. The need for a legal duty of candour on individuals has been highlighted by Robbie Powell’s father Will Powell and links to proposals for a Hillsborough Law. The HSIB and the National Patient Safety Commissioner initiatives have some built in limitations to what can be achieved. The HSIB’s remit does not include investigation of systemic problems. This limits the areas that they can cover. As for the National Patient Safety Commissioner, this is a new role which is very promising. Unfortunately, the scope of this role is limited, with the remit covering only medicines and medical devices. This means that these two initiatives are not able to tackle the systemic organisational cultural issues that are at the root of major patient safety failings. One thing that stands out here is that none of the above measures specifically tackle the stigma around whistleblowing in healthcare. In fact, some reinforce the stigma. A way forward Much has been written about healthcare whistleblowing and measures that have been implemented to promote positive change. Despite these, the victimisation of healthcare whistleblowers and the stigmatisation around whistleblowing in health and in social care has not abated. The measures introduced have so far achieved very little. In some instances, I believe, they have made the problem worse. The Protection for Whistleblowing Bill,[26] which passed its second reading in December 2022, proposes the repeal of the current Public Interest Disclosure Act,[27] replacing it with an Office of the Whistleblower. This would prevent concerns of genuine healthcare whistleblowers becoming buried under an employment issue, and their original patient safety concerns being side-lined. The Public Interest Disclosure Act is expensive, limited in scope and beyond the reach of most whistleblowers. It is also overly complex, with cases currently waiting for over 2 years to be heard. Employers game the system to run whistleblowers out of funds. Fewer than 12% of cases that go to the Employment Tribunal win. It does not protect patients and is not accessible to members of the public who blow the whistle. Currently there is no statutory provision to investigate or address the wrongdoing highlighted by whistleblowers. Many whistleblowers have been denied any protection because they are not workers. An Office of the Whistleblower would change this and help us identify the root causes of systemic patient safety failings.[26] I urge everyone with an interest in this subject to read the bill and watch the video of Baroness Kramer introducing the second reading of the Bill.[28] For the first time in years, I am optimistic. References Department of Health. The report of the public inquiry into children's heart surgery at the Bristol Royal Infirmary 1984-1995: learning from Bristol (Cm5207(II)); 2001. Department of Health. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry; 2013. Hartles S. Robbie Powell: Time for Truth, Justice and Accountability. Open University Harm & Evidence Research Collaborative; 2021. Kirkup B. Independent report. The life and death of Elizabeth Dixon: a catalyst for change; 2020. Ritchie F. Independent Review into Thomas Oliver McGowan’s LeDeR Process Phase two; 2020. Department of Health, Northern Ireland. Report of the inquiry into hyponatraemia related deaths; 2018. Gosport Independent Review Panel Report. The Panel Report - 20th June 2018. Dr Kirkup B. Reading the signals: maternity and neonatal services in East Kent – the report of the independent investigation; 2022. Francis R. Report on the Freedom to Speak Up review; 2015. Bewick M, et al. University Hospitals Birmingham NHS FT (UHB) Phase 1 Review by I4QU. Clinical Safety. iQ4U Consultants; 2023. Action against Medical Accidents. Robbie’s Law. The European Court Ruling in full: https://hudoc.echr.coe.int/fre#{%22itemid%22:[%22002-6998%22]}. Parliamentary and Health Service Ombudsman. Radio Ombudsman: Will Powell’s 32-year quest for justice for son Robbie; 2022. NHS England. About LeDeR; 2023. NHS Digital. Health and Care of People with Learning Disabilities, Experimental Statistics: 2018 to 2019 [PAS]; 2020. Department of Health and Social care. Premature Deaths of People with Learning Disabilities: Progress Update; 2014. Heffernan M. I have never encountered an organisation as vicious in its treatment of whistleblowers as the NHS. BMJ Talk Medicine Podcast; 2020. Bevan H. Rocking the boat and staying in it: how to be a great change agent. Slide set; 2016. Grossman D, Clare S. Birmingham hospital culture worrying - health secretary. BBC Newsnight; 2023. Care Quality Commission. Fit and proper persons: directors; 2022.   Clegg A. How cronyism corrodes workplace relations and trust. Financial Times; 2022. WhistleblowersUK, Meeting with Dr Bill Kirkup CBE and the APPG for Whistleblowing: blog; 2022. NHS England. Speaking up support scheme; 2022. Greenop D. NHSI Whistleblowers Support Scheme pilot. Final Evaluation (redacted); 2019. Obtained in 2022 following a Freedom of Information Request. Kark K, Russel J. A review of the Fit and Proper Person Test. Commissioned by the Minister of State for Health; 2018. Care Quality Commission. Regulation 20. Duty of Candour; 2023. UK Parliament. Protection for Whistleblowing Bill [HL]; 2023. UK Government. The Public Interest Disclosure Act 1998 [PIDA]. Baroness Kramer. Protection for Whistleblowing Bill, 2nd Reading, Baroness Kramer 2022. Video recording of the House of Lords introduction.

In this anonymous blog, a person with type 1 diabetes describes their recent experience upgrading their insulin pump, a medical device used to continuously deliver insulin instead of taking multiple daily injections. They describe how communication issues and gaps in staff knowledge led to a significant delay in accessing the pump, which caused them significant stress. They also ask whether recent announcements about increased access to diabetes technology over the next few years will match up to the reality experienced by people with diabetes accessing care at local healthcare organisations. In December 2023, NICE approved the roll out of hybrid closed loop systems to all patients with type 1 diabetes, which will make a big difference to both life-impact and clinical outcomes for thousands of adults and children in England. The announcement was a big deal, making mainstream news and lighting up social media. Looking behind the headlines, it will take up to five years to see technology reach everyone who is eligible, as NICE has stated. However, I’m dubious as to whether that target is achievable, because with all the will—and even all the funding—in the world, we need to have enough staff with the right training to make it happen. Diabetes teams need clinical training related to each system, but they also need to know how to run the process of getting this tech from factory to patient, with all the right forms signed and permissions given. They will be dealing with much larger volumes of requests, authorisations and administrative tasks on a daily basis. I recently had a brush with the administrative burden of upgrading my tech, and it somewhat highlighted this gap between the promise and the reality. I’ve been fortunate enough to be on an insulin pump for over a decade. Last December, with my current pump coming to the end of its life, I had the opportunity to choose a new one that I could use alongside my current continuous glucose monitor (CGM) to make a hybrid closed loop system. It felt like a weight had been lifted—in a few weeks, I would have access to a system that promised to make life a bit easier. Fast forward six months, and there’s a different story to tell. I was finally trained and ‘plugged in’ to my new pump last week. Unfortunately, I found myself in a marathon effort to try and access the new device. There were extended delays in getting approval, ordering the pump and booking a training session. My old pump crept out of warranty and became increasingly unreliable, and my stress levels crept up as I tried to figure out why things weren’t progressing. I left so many voice messages and emails to try and establish what was going on, but I often received no reply or call back. I’m still not fully clear on why it all took so long, but I have picked up that the delay was due to a combination of staffing issues, missed emails and lack of familiarity with the tech company's systems. At the beginning of the process, I had been told it would take a few weeks. I don’t want to lay all the blame on the team that runs the service, where I know there are capacity issues. But the experience revealed holes in the system that prevent patients accessing support and treatment that has been agreed. I was bolshy and desperate enough to push things through, and ended up contacting the company directly to see if they could help, which they did. It was me, as the patient, who pieced together where communication had gone wrong and highlighted what needed to happen. I know the health system pretty well and will keep asking until I find the person who can answer my question. My fear is that many people don’t know where to start, or where to go next when they meet a wall of silence. Friends sometimes forward me articles about how people with diabetes will soon all have access to the latest tech, but the headlines usually fail to convey the reality. ‘Soon’ and ‘all’ are subjective terms, depending on the systems that exist within your local organisation. While I believe the national team is putting significant effort into addressing access inequalities and postcode lotteries, there is still so much to do to ensure that patients receive the care they are entitled to and maintain their trust in their healthcare team. I hope that the promise will become a reality sooner rather than later, and that people with diabetes don’t face an uphill struggle to access the help they have been told to expect. The commitment from NHS England to the goal of universal access to closed-loop technology should rightly be celebrated. But the missing link between national policy, local practice and, vitally, how these are communicated to patients, needs some attention. As it stands, it is a recipe for frustration and anxiety.