Daphne Havercroft is a Patient Advocate – someone who voluntarily uses their previous experience as a patient to represent the patient and public interest in NHS service change consultations. Daphne became involved in Patient Advocacy with one of the UK Cancer Charities and has also attended scientific training courses for Advocates run by the National Breast Cancer Coalition in the United States. Daphne is a founder member of UK charity, Independent Cancer Patients’ Voice, an independent cancer patients’ group that contributes the patient perspective to cancer research proposals.
Daphne believes that the NHS aim to rationalise services and consolidate clinical expertise makes sense in principle. However, to deliver affordable, measurable improvements to quality of care and patient safety, careful planning is required, in full consultation with clinical, patient and public service users. She believes that when NHS Trusts prioritise “corporate” agendas, including achievement of Foundation Trust status, over service quality and safety, this can lead to deterioration of service and harm to patients. When that happens and concerns are repeatedly ignored or dismissed by the NHS, clinical, patient and public whistleblowers feel impelled to act.
The Bristol Royal Infirmary (BRI) Heart Inquiry heard evidence on the top floor of a busy Bristol office building where I used to work. I remember seeing parents leaving the building in tears after the oral hearings and felt thankful that my own two children were safe and well.
People had faith that lessons would be learned after the Inquiry and there would never be another Bristol. They have been let down.
Bristol is a vibrant city and its skyline has changed dramatically since the BRI Heart Inquiry. The office block that housed the Inquiry was demolished in 2010. Although Bristol looks very different, the NHS culture that led to the BRI Heart Inquiry is alive and well. We have had another “Bristol” in the form of the events surrounding the Bristol Histopathology Inquiry.
The Bristol Histopathology Inquiry and my concerns about its conduct and outcomes are well-documented on Dr Phil Hammond’s website:
Since 2006, I have been involved in Bristol NHS Service Reconfigurations, and this is how I became involved in the Histopathology Inquiry. It has not been a pleasure, but it has been interesting and educational and has given me some insight into the culture that has given us the two “Bristols” – Heart and Histopathology.
More recently, we have had a third Bristol, the abuse of residents of a local care home, exposed by the media after a whistleblower’s complaints to the Care Quality Commission (CQC) were ignored.
How the NHS Manages Patient and Public Involvement
My relationship with the NHS started when I joined a Bristol-based charity to support the work of a local breast clinic, following a diagnosis of breast cancer a few years earlier. At the first meeting I attended, the committee members were complaining about lack of consultation on changes to the location of breast surgery services.
These changes had been proposed under the BHSP (Bristol Health Services Plan) “an ambitious, wide ranging scheme to radically modernise and improve NHS health services in the Bristol area”. I knew that there had been a number of public consultations about the plan, so I set out to find out about the consultation for the breast surgery changes.
I discovered from consultation documents on the internet that only six people had responded to the consultation, four in favour of the changes and two against, and the NHS had used this as a public mandate to go ahead with the plans. However I discovered that many local people had no knowledge of them, not even breast cancer patients. After much skirmishing with the NHS to identify which particular consultations had delivered the result, the BHSP Programme Manager informed me that he/she had, “considered going to the original documents. Unfortunately I have now been informed that these were destroyed in fire at the storage facility which housed the Wallace and Gromit archives. We were not aware of the loss of our records because the warehouse owner’s business records were also destroyed and they were unable to notify us of the destruction of our material”.
That was my introduction to NHS public and patient consultation.
My next venture into the world of the NHS was as a member of a review to look at proposals to reconfigure Gynaecological Cancer Surgery for Bristol and Bath. People often complain that the NHS makes decisions and then pays lip service to public and patient consultation to get a tick in the box for lawful involvement.
It is to get the tick that the NHS likes patients and the public to participate in its reviews – ones who will roll over and have their tummies tickled. It doesn’t like ones who are a bit bitey and scratchy – the ones who ask questions the NHS finds awkward to answer and who want to hold it to account to deliver high quality, safe services.
During the Bristol/Bath Gynaecological Review, three members of the public requested that an important meeting was audio recorded (the NHS was not up for video recording). The NHS grudgingly agreed to do this, but made the recording on obsolete technology. We spent one sunny summer’s afternoon in a room in the bowels of a Trust HQ in Bath, a former workhouse, trying to decipher the audio recording. Eventually we persuaded the NHS to re-record onto CD and also provide a transcript of the meeting.
In 2007, a HOSC (Local Authority Health Overview and Scrutiny Committee) asked clinicians to come to a meeting to tell them their opinions on the Bristol breast surgery proposals. The NHS Managers weren’t having that, and so the clinicians were chaperoned by a ten strong management mob that included the PCT’s (Primary Care Trust) solicitor. Just before the start of the meeting a Trust manager was observed tinkering with the PowerPoint presentation that the clinicians were going to deliver. So much for the HOSC hearing the clinicians’ views.
In 2009, a brave clinician attended a HOSC meeting as a member of the public to express a view that was contrary to that of his Trust and local PCT Management. There was an enjoyable frisson when the PCT representatives entered the council chamber and saw him. He has not been seen in public since.
These are a few examples of the sorts of tricks used by the NHS to try to manipulate public, patient and clinical involvement in its service changes. These and more tricks and the tips to deal with them are in “How to screw patient/public whistleblowers”.
NHS Culture and the Events Surrounding the Bristol Histopathology Inquiry
Early in my dealings with the NHS in 2007, I became aware of the concerns about Histopathology at University Hospitals Bristol NHS Foundation Trust (UHBT). I knew that North Bristol NHS Trust (NBT) doctors had raised concerns with Trust Medical Directors, yet no effective action was being taken. I know now that a former UHBT surgeon had, over seven years, raised concerns about his Trust’s paediatric pathology, performed by some of the same histopathologists who caused serious concern to NBT colleagues. This is all evidenced in the Bristol Histopathology Inquiry Report. Through my involvement with breast care and gynaecological reviews, I kept asking questions about pathology and just got obfuscation in response. Therefore I felt relieved when I opened Private Eye in June 2009 and saw that Dr Phil Hammond had exposed the Pathology Scandal.
Unfortunately the conduct and outcome of the subsequent Inquiry, commissioned by UHBT is regarded as seriously flawed by some members of the public, who are calling for the NHS to establish a public forum for open and constructive discussion and resolution of the issues. These calls have, so far, been rejected by the NHS, even though South Gloucestershire and North Somerset LINks (Local Involvement Networks) have also called for the forum. The fact that the NHS is unwilling to defend the integrity of the Inquiry in discussion with the public speaks for itself.
Both NBT and UHBT have governance policies in place for dealing with alleged or confirmed Serious Untoward Incidents. If these policies had been properly followed when concerns were first raised about histopathology and paediatric pathology in Bristol, they would have been properly investigated and resolved and patients and their families would have been informed at the time the concerns were first raised.
It is a disgrace that NBT only informed patients and relatives whose cases were considered in the Inquiry after it had concluded. Months after the Inquiry Report was issued, UHBT still refuses to confirm under the Freedom of Information Act whether it has informed the families affected by the paediatric misdiagnoses about the Inquiry.
Clearly NHS organisations in Bristol do not want to have to explain to the public why the recommendations from the Bristol Heart Inquiry, that, if followed, could and should have prevented the events leading to the Bristol Histopathology Inquiry, were ignored when doctors first raised concerns about pathology misdiagnoses.
Even while the Inquiry was being conducted, the same culture and behaviours towards clinicians and the public that got us the two Bristols – Heart and Histopathology – continued to thrive.
At the end of 2009, after proper consultation, NHS managers, clinicians and patients all unanimously agreed that Bristol’s breast care services should be centralised under the management of NBT (North Bristol NHS Trust) in a “Hub” at Southmead Hospital, with “Spokes” around the city – clinics enabling people to access some breast services closer to home. These were to be in place by 2014, the year the new PFI (Private Finance Initiative) Hospital at Southmead is due to open.
Unfortunately, during 2010 and early 2011, NBT managed not only to damage the progress of integrating the NBT and UHBT (University Hospitals Bristol NHS Foundation Trust) breast teams at Southmead hospital, but also its own breast care service, based at Frenchay Hospital, which was moved to Southmead in May 2011.
It appears that NBT decided that its ambitions to centralise its pathology services at its new Southmead laboratories, separating breast pathology from the rest of the service, took precedence over the clinical model agreed during the 2009 Breast Care Review, which required co-location of breast pathology with the rest of the service. The problem is that NBT did not consult on its pathology plans with the members of the public who had supported the outcome of the Review. Instead, in May 2010, it tried to move pathology from Frenchay to Southmead Hospital, by stealth, without any public consultation, meaning that the breast care service at Frenchay Hospital would have been unable to meet its existing service standards.
NBT’s endgame is obvious. Show that it can successfully centralise its own pathology services at Southmead and then make a grab for the UHBT pathology service. Except things did not quite go according to plan.
Breast clinicians and patients challenged the May 2010 pathology transfer plans and NBT decided to halt and look at the option of moving the whole breast service early to Southmead to solve the problem of detaching breast pathology from the rest of the service.
So far so good. Unfortunately, NBT’s management of this proposed option was not a success, mainly because, yet again, it did not bring its detailed proposals to the Implementation Group (comprising managers, clinicians, patients and the public) set up for the purpose of overseeing changes to the breast service, for formal discussion and agreement, and because it carried on moving technical and administrative support from its Frenchay pathology laboratory when it was needed by the pathologists working at Frenchay. The result of this lack of open discussion and consultation is that its three breast pathologists were subjected to severe stress and resigned, its Head of Cellular Pathology and Head of Pathology services resigned their headships, its breast team is wounded and it has alienated some patients and members of the public who were staunch supporters until NBT decided not to be open and transparent with them.
It doesn’t matter whether the NBT breast service is at Frenchay or Southmead. Without high quality, safe breast pathology, it cannot deliver a service to the standards promised in the Bristol Breast Care Services Review until further notice. This could all have been avoided by proper planning and consultation with clinicians and the public. At the time of writing, NBT, running one of the largest symptomatic breast services in the country, still has no experienced, specialist breast pathologists and is sending breast histopathology to Nottingham for reporting. This was all completely avoidable, but, given the unresolved concerns of some members of the public and doctors about the safety of UHBT’s breast histopathology, which, in their opinion, the Inquiry failed to tackle, it might be safer for Bristol’s breast patients if histopathology reporting stays in Nottingham and never comes back.
It is this sort of culture and behaviour, where Trust corporate agendas take precedence over managers’ and doctors’ duty of care to patients, that damages services by “dumbing down” existing service quality and putting patients at risk. This is the sort of behaviour that contributed to the failings that led to the Bristol Histopathology Inquiry – in that case, reconfiguring services across Bristol without proper planning for pathology; and failure to acknowledge and deal with the consequences of lack of consistent, high quality, safe standards in the City’s laboratories. It is a Bristol disease that shows no signs of ever being cured.
Some misdiagnoses of adult cases were documented at least seven years ago, but a misdiagnosis occurred as recently as December 2010, resulting in a patient having unnecessary surgery. This came to light in February 2011, one month after Bristol Health and Adult Social Care Scrutiny Commission was told by UHBT that “UHBristol has a different leadership and different systems, policy and processes are in place to ensure this (i.e. misdiagnosis) could never happen again.
The regulators, CQC (Care Quality Commission) and Monitor were informed of this serious incident by me in February 2011. In March 2011, UHBT claimed to have informed the regulators of the incident in February. At a meeting with CQC on 4th May, I queried whether UHBT had actually notified it of the incident. The Regulator declined to comment.
NHS Managers and doctors have to balance corporate priorities with patient needs. That is what they are paid to do. In my experience, some of them do not do it well and their unprofessional, manipulative and coercive behaviour towards patients, the public and clinical colleagues who speak out is very damaging.
I believe that doctors can and should do much more to challenge the culture and behaviour of the NHS that has given us the BRI Heart Inquiry, Mid Staffs, the Bristol Histopathology Inquiry and other health scandals. The few doctors who stand up for patients are still damaged and many become outcasts.
There is a personal cost to those members of the public, as well as doctors, who stand up to the NHS culture of bullying, failure to follow its own policies for managing Serious Untoward Incidents, secretiveness and lack of proper and meaningful consultation in managing change. People, including doctors, whom I thought I could trust and used to be friends, retreat into the shadows when things get tough.
But I have my family and true and trusted friends and allies, some of them doctors. They will not compromise on holding the NHS to account to deliver safe care.
Patients will only be protected when doctors realise that the personal consequences of not meeting their first duty to make patient care their first concern are far more unpleasant than colluding in the covering up the health scandals and the damage to good services like the NBT breast service.
Currently too many doctors allow corporate and personal agendas to take precedence over patient care.
Only doctors can cure the Bristol disease and others like it. We need our doctors to be lion-hearted, not chicken-livered, and stand up for their patients.