Patients First and Patient Advocacy
Authors: Noemi Fabry and Daphne Havercroft
We are sitting in a comfortable front room near Bristol, sipping tea and eating cake. A group of people has gathered for a final meeting before their next showdown. They are baby boomers, ordinary people who were born and grew up around the same time as the National Health Service was established. They are a very unlikely band of outlaws. But in the eyes of the local NHS leaders, generously rewarded by annual bonuses, elaborate pay packages and final salary pensions, this group of concerned citizens are exactly that: rogue outlaws in need of reigning in. And they are treated accordingly.
We have gathered in this living room to discuss the strategy for the upcoming evidence day in front of the South Gloucester Health Scrutiny Committee. For those uninitiated in the working culture of the NHS it is difficult to comprehend how it is that in someone’s home, the NHS, the largest employer in the country has to be scrutinized and held to account. Where are the regulators? CQC, Monitor, the GMC? It is here that reports about the safety of the Histopathology service for the entire population of Bristol, North Somerset and South Gloucester are studied, evidence is gathered and reviewed.
Tomorrow in front of the Health Scrutiny Committee, this band of unpaid patient advocates will face the full force of the local NHS: CEO, Medical Director, director of commissioning, Clinical Lead for Histopathology and Communications Manager (combined annual salary in excess of half a million pounds)
For these local NHS leaders, their second day working after the long Christmas holiday is spent before the committee, asserting and desperately insisting that there is no genuine public concern about the safety of local Histopathology Services, and that the twenty odd volunteer advocates pressing their case are merely on a personal vendetta, a mission to seek attention and create trouble.
As Robert Woolley, UHBT’s CEO apologises for past failures, he insists that, although regrettable and painful, they in no way reflect the current culture at the organisaton.
He once again invites concerned victims to raise legitimate issues (emphasizing the word legitimate). Trying to reassure his sceptic audience that the working culture in the NHS in Bristol is open and transparent. Patients, the public and their elected politicians can feel confident that every effort is made to ensure the service is safe and adheres to the highest standard.
What is far less clear is why it requires the presence of four Senior Managers, two of them doctors, and a 50 page elaborate report to drive home such a simple and uncontroversial truth. Surely, in these times of austerity Senior Executives charged with reorganising and re-building two major Trusts would have other demands on their time and could have met the patient advocates to discuss their concerns?
Mr Woolley tries to paint a rosy picture. Yet why is Bristol struggling to retain and recruit Histopathologists? Why does a retired UHBT consultant pediatric surgeon feels compelled to spend his well deserved retirement compiling an account of the ‘destruction’ (his word) of paediatric pathology in Bristol and attending council meetings?
When it comes to making sure the NHS does what it says on the tin—care for its patients with absolute commitment and accountability it is not regulatory quangos such as Monitor, CQC, or the GMC who doggedly pursue substandard practice and investigate safety concerns.
Clinicians do approach their line manager, their medical director and their professional bodies, but letters remain unanswered, and senior executives do not listen. What keeps them so busy that they do not pay attention when doctors express fears that patients are being avoidably harmed and some have died?
To effectively highlight service failures, caring health workers seek the support of patients, the public and their families, sharing concerns and their evidence in the hope of banishing bad practice to enable all staff to carry out their professional duties and responsibilities to the best of their ability, and with humanity.
Despite all the elaborate NHS reassurances about an open and transparent culture and commitment to support clinicians who raise alarm, health workers experience closed ranks, organisational denial and bullying. Deaf ears all the way to the Department of Health. Somehow despite the powerful rhetoric, the health service still hasn’t learned how to respond gracefully to dissent.
This why the Leadership of the NHS is held accountable in places like Bristol by committed citizens—in spite of the millions spent on management consultants and service improvement the real work of monitoring the NHS takes place for free and at no expense to the tax payer.
The catalyst for real change occurs in the hearts and homes of ordinary people – when parents demanded answers and campaigned for an inquiry into the Bristol Children’s Heart Surgery, and when those prematurely bereaved by the appalling care in Stafford Hospital came together to demand accountability and change.
Patient advocates and whistleblowers find themselves spending countless hours struggling against the intransigent culture of the NHS when they try to speak out for patient safety. Rather than demonstrating a smoothly working regulatory and monitoring systems, inquiries such as the Bristol Royal Infirmary into paediatric heart surgery and the Mid Staffordshire Public are testaments to the determination of public campaigners to protect patients by seeking transparency and accountability.
Despite such high profile inquiries, growing number of patient advocates feel the need to campaign to fight NHS injustice and protect patients. They find themselves facing seemingly inexhaustible NHS resources diverted to undermine and silence them. While their concerns remain unexamined.
The NHS claims that whistleblowers are protected and should not fear raising concerns. The reality is very different. In Bristol some doctors tried for many years to get NHS Trusts to take seriously and investigate concerns about histopathology and paediatric pathology at the Bristol Royal Infirmary. When the Trusts’ whistleblowing policies failed them, doctors were reportedly too frightened to publicise their concerns, which included cases of serious harm to patients, including at least two deaths.
Only in 2009, two years after concerns were first raised in public and only after a report was published in Private Eye did the NHS commission an internal inquiry, costing over £720,000. Again it failed to protect and support whistleblowers or to investigate the true extent of harm to patients. It also failed to establish why senior managers did not act urgently prioritizing patient safety, protecting them from harm, as required by the Code of Conduct for NHS Managers.
Local Involvement Networks and Local Authority Health Scrutiny Committees are the public’s eyes and ears, responsible for scrutinising NHS service changes and issues of local concern. However it is unrealistic to expect lay people to be able to effectively oversee an NHS which allocates disproportionate public resources to undermine and resist public scrutiny
If NHS professionals felt supported when they raised patient safety concerns and the concerns were properly addressed, there would be no need for Patients First and patient advocates. Until that day, both have the same goal – NHS accountability and support for all who raise concerns about patient safety, whether doctors, patients or the public.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. Margaret Mead, Anthropologist, 1901-1978,
In another sphere of NHS activity, as a nice, polite middle-class baby boomer I’ve found that I’ve become rather an ‘outlaw’ as far as more or less the same bunch of people are concerned.
It’s a bizarre feeling. And very intimidating. The NHS can be very bullying and intimidating if you step out of the craven, acquiescent role far too many of its staff expect you to play.
This can never, ever be right in a democracy. It can never, ever be right when a body charged with nurturing health and curing illness can behave in ways that seriously prejudice the health, well-being and safety of anyone who dares to politely and intelligently challenge anomalies.
I know the ‘past culture’ only too well. The current culture is no different apart from a few more sophisticated, more smiley proponents. I doubt I’d be allowed within a mile of any ‘local involvement’. I have some inside knowledge of how that project was initiated. What it’s turned into is nowt more than window dressing.
I’d better stop there otherwise I’ll be here all night! But I wanted to wish you all great strength in your endeavours. There are many of us out here who deeply appreciate what you’re doing.