Andrew Lansley has said that “all service changes he NHS must be led by clinicians and patients and not driven from the top down”. This letter to him from patient advocate Daphne Havercroft should test whether he means it.
20th June 2010
Dear Mr Lansley,
NHS South West – Fitness to be a Pilot Site for recommendations of the Carter Review of Pathology and concerns about transparency of the Bristol Histopathology Inquiry
Patient Advocates in the South West welcome your commitment for NHS service changes to be led by clinicians and patients.
“all service changes must be led by clinicians and patients and not driven from the top down”
In the Bristol area, we are surprised and disappointed to find ourselves being subjected to a review of Pathology Services imposed from the top down that has been instigated by NHS South West and NHS Bristol without proper and full involvement of clinical users of the service and patients.
NHS Bristol has produced a review initiation document that states “There is a requirement on Strategic Health Authorities (SHA’s) (sic) to ensure that all PCT’s (sic) develop plans for establishing the consolidation of services into managed pathology networks in the annual Operating Framework for the NHS in England in 2009/10. By 2011/12 the review recommends that consolidated networks should be fully established and performing to the revised quality standards. The South West Strategic Health Authority is to be one of the two national pilot sites to deliver the Carter review recommendations and savings”
Local patient advocates fully support a review of local Pathology Services to modernise, improve quality and safety and deliver cost efficiencies. However the top down imposition of the Carter Review recommendations looks depressingly like a variant of the same top down dogma that people in the South West have endured, without appropriate consultation, by the way in which Cancer Improving Outcomes (IOG) reconfigurations have been implemented.
There is an urgent public debate to be had about the fitness of NHS South West to be one of the two national pilot sites to deliver the Carter review recommendations in the light of the following:
1. Your ordering of an Inquiry into the part played by NHS South West in the dismissal of John Watkinson by the Royal Cornwall Hospitals Trust, including consideration as to whether the SHA “acted appropriately, proportionately, in keeping with its role and within its statutory responsibilities”.
2. Public calls for the suspension of SHA Chief Executive Sir Ian Carruthers, and other implicated South West managers while the Inquiry proceeds.
3. The resignation of a highly respected and experienced patient advocate from a Cancer Group in Cornwall, alleging “bullying and intimidation” by the NHS in the South West.
4. The poor quality of the IOG driven Bristol/Bath Gynaecological Cancer Services Review, where local patient advocate opinion is that clinicians were intimidated and bullied into silence, and similar attempts were made to do the same to patients. We believe local NHS Organisations, including NHS Bristol, tried to avoid their statutory responsibilities to consult and this was because the SHA clamped down on proper consultation, as it did for Upper GI service reconfiguration in Devon and Cornwall. Fabian Richter, Conservative Prospective Parliamentary Candidate for Bath at the 2010 Election, saw for himself the injustices that took place with the Gynaecological Review, including NHS Bath and North East Somerset repeatedly trying to mislead patients and clinicians into believing that implementation of IOG is a legal requirement, when it clearly isn’t, being guidance. We are very grateful to Fabian for publicly articulating the concerns of local people and clinicians.
5. The fact that NHS South West has officially known about the UH Bristol (University Hospitals Bristol NHS Foundation Trust) Histopathology misdiagnosis allegations (now the subject of a UH Bristol commissioned inquiry) since at least August 2008, and has not shown the public that it acted promptly and responsibly to protect those who raised the concerns, protect patients and ensure the allegations were properly investigated. According to a Freedom of Information Response I received from NHS Bristol on 19th June, it is alleged that the SHA knew about the serious allegations before July 2008, a year before they were reported by Private Eye Magazine.
6. The question as to whether NHS Bristol and other local NHS organisations within the NHS in the South West, acted appropriately and responsibly when they first became aware of the Pathology concerns. In NHS Bristol’s case, this was in October 2007 and may even have been before.
7. The extremely disappointing start to the Bristol Pathology Review where it appears that the NHS has tried to appoint a lay representative to its Project Board behind the backs of local people and without giving them any say in patient and public involvement in the Review. NHS Bristol appears to have used this extraordinary incorrect and patronising statement as a reason to exclude patient representation from the Pathology Review:
“We must recognise that patients have little direct contact with pathology services and therefore cannot contribute their own experiences of using the services”.
It seems that NHS Bristol will only allow patient views to be represented through local LINks Local Involvement Networks) organisations. Although I am a LINks member, I believe this is an inadequate substitute for the direct involvement of patient advocates who have actually used pathology services and have a good, basic understanding of the science of pathology and how it is central to diagnosis, treatment decisions and research.
At the root of the Bristol Histopathology Inquiry are these and similar allegations “misdiagnosis of patients with thoracic, gynaecological and breast disease whose histopathology specimens have been reported by pathologists at the Bristol Royal Infirmary. Some of these have had fatal outcomes, and other patients have been treated for malignant disease (e.g. mastectomy and node clearance; intrapleural chemotherapy) when subsequent review showed benign disease.”
In two of the cases the BRI admitted liability and settled with the families. Yet astonishingly, NHS Bristol appears to claim that patients have no useful contribution to make to the pathology review and will only allow tokenistic representation via LINks organisations. In our opinion, based on all the evidence of lack of consultation in the South West mentioned previously, Sir Ian Carruthers is behind this exclusion of patient advocates from direct involvement and decision making in the Pathology Review. The South West has highly experienced, well educated patient advocates and we suspect that Sir Ian fears their ability to best represent patient interests by questioning and challenging the NHS and demanding good evidence and quality assurance to support decision making.
Following the Bristol Histopathology Inquiry, managed by Verita since December 2009, and widely perceived as heading for a whitewash because of secrecy and lack of confidence in the way it is being conducted, Bristol’s Pathology Services urgently need to be reviewed. It is looking increasingly unlikely that patients and the public can entrust such important work to local NHS organisations while they display obvious resistance to allowing the Pathology Review to be led by patients and clinicians, in defiance of Government expectations, and when the fitness of NHS South West, under Sir Ian Carruthers, to be a pilot region for the top down Carter Review, is highly suspect.
South West patient advocates support the recommendations of the Carter Review in principle. However, we fear that in Sir Ian Carruthers’ South West, they will be imposed on us and clinicians without full, open and transparent consultation that meets statutory requirements. We believe that this may lead to less safe and lower quality Pathology services in the South West.
We ask you to consider and advise whether, with its track record of suppressing patient and clinician leadership of NHS service change, and with a Chief Executive widely regarded as fostering a bullying and intimidatory culture, NHS South West is an appropriate and safe site to be a pilot for the Carter Review recommendations.
We would also appreciate knowing the coalition Government’s position on the importance and validity of the Carter Review recommendations in respect of local pathology service reconfigurations. As it is a top down recommendation it is unclear to the public whether it can be easily reconciled with the requirement for all service changes to be led by clinicians and patients, not imposed from above.
As you have asked Verita to conduct the Inquiry into the circumstances surrounding the John Watkinson Industrial Tribunal, we suggest that you may also wish to inquire into public concerns I mentioned earlier about the Bristol Histopathology Inquiry, which is managed by Verita. One of the reasons for the concerns (there are others) is that the Terms of Reference of the Inquiry do not include investigation into role of NHS South West, NHS Bristol (and other local Primary Care Trusts) and the Avon, Somerset and Wiltshire Cancer Services (ASWCS) Network in respect of their response to the allegations. A lesson learned from the Bristol Royal Infirmary Heart Inquiry is that it is important to know from the organisations and individuals responsible for patient safety and quality of care the answer to these questions:- what did you know? when did you know about it? what did you do about it? It appears that NHS South West, NHS Bristol and ASWCS will be protected from being accountable to the public to answer these questions. This is not right.
We also request your intervention to protect our rights and those of clinical users of pathology services to be fully involved and consulted by insisting that NHS South West and the organisations that report to it ensure that any Bristol area Pathology Review is led by local clinicians and local patients, without intimidation and bullying by NHS South West and other local NHS organisations.
Mrs Daphne Havercroft
Consumer Member, National Cancer Research Institute, Breast Clinical Studies Group
Trustee, Independent Cancer Patients’ Voice www.icpv.org.uk
Member, South Gloucestershire LINks
Member, Breakthrough Breast Cancer Campaigns and Advocacy Network
Member, Bristol & Weston Breast Care Services Review Project Board
Independent Patient Adviser, Bristol & Bath Head and Neck Cancer Services Review.
Graduate, Project Lead & Project Lead Clinical Trials http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=395
Steve Webb, MP for Thornbury and Yate
Jack Lopresti, MP for Filton and Bradley Stoke
Paul Burstow, MP, Care Services Minister