Patient Safety - Health Committee Contents

Memorandum by Josephine Ocloo (PS 82)


  Josephine Ocloo is Patients for Patient Safety Champion, England, WHO World Alliance for Patient Safety.

The submission should be read in conjunction with three appendices:

    — Appendix One—The Guardian article on my personal story.[120]

    — Appendix Two—The article "The Patient's Tale".[121]

    — Appendix Three—The Break Through Programme Newsletter.[122]


  In the patient safety context, a number of the inquiries into serious failings of clinical care since the late 90s, have focused on the issue of governance as central to addressing issues of safety and quality of patient care in NHS organisations. Yet whilst some progress has been made in developing a patient safety culture, there are a number of areas where considerable problems remain.

This submission suggests that a culture of denial is still firmly in place within the NHS and a lack of appropriate systems of governance which can hold individuals and organisations to account when negligence and wrongdoing takes place. This situation is seen to cause considerable harm and distress to patients and also to prevent the learning that needs to take place from adverse incidents that will prevent them occurring over and over again in healthcare. The issues associated with the failings of the justice, complaints and systems of professional regulation (outlined below), to provide victims of harm with accountability and the consequences of this situation are rarely discussed in the mainstream patient safety movement. This submission identifies what some of the key issues are in this area and then highlights the issue of the lack of progress made in involving patients and the public in patient safety despite the development of this agenda in other parts of healthcare. The general conclusion from my evidence is that victims of harm have been relegated the lowest priority in the attempts to build a new patient safety culture and yet bring to the table issues that are very different to the dominant perspectives shaping the current patient safety reforms. These issues are important in representing the voices of people who have been disenfranchised by health services, who are seeking changes to the ways those services are provided and which also raise issues about more democratic governance, citizenship and human rights.

  In general it is agreed that about 10% of hospital admissions result in an adverse incident, about half of which are preventable (DOH 2000; NAO 2005). Whilst no actual data is available on the numbers of negligent PSIs occurring in the UK, respected international studies such as The Harvard Medical Practice Study (HMPS) (Brennan, Leape et al 1991; Leape, Brennan et al 1991) and The Quality in Australian Health Care Study (QAHCS) (Wilson, Runciman et al 1995) suggest these make up somewhere between 27-51% of all adverse incidents. Yet despite these numbers, only a tiny proportion of those affected by PSIs are able to bring a legal claim each year. In 2006-07 the total figure for negligence claims was 5,426 which was roughly the same for the preceding two years.


  The situation described above suggests that many people are being denied justice and much needed compensation, when affected by the most serious PSIs. There has also been a failure to implement no-fault Compensation or redress Scheme cited as vital to building a safety culture in Making Amends, five years after this report was published. Lack of access to justice is also aggravated by the culture of denial within the NHS acknowledged within Safety First (2006) and the evidence that patients are not being told when a PSI has occurred, particularly about the most serious incidents (House of commons public accounts committee 2006). Questions remain as to whether this situation has improved and what is being done to address the lack of incident reporting in Primary Care, of which little evidence exists in the National Reporting and Learning System (NRLS).


  Patients attempting to resolve their concerns through the complaints system have long faced considerable barriers in trying to resolve their concerns. These issues have been well documented by numerous reports and reviews over the last 20 years (DOH 1994, 2001; 2003; Parliamentary and Health Service Ombudsman 2005; HCC 2007), which have found the NHS complaints procedures to be seriously failing complainants and widely viewed as biased and lacking in independence. In recent years these reviews have led to a myriad of changes in order to make these procedures more responsive to patient concerns. This led to further proposals to reform complaints handling set out in the White Paper, Our Health, our care, our say (2006), proposing the establishment of a new comprehensive single complaints system across health and social care by 2009 and more comprehensive complaints handling at a local level. Since then the consultation document Making Experiences Count (2007) has recognised continuing failings in the existing complaints system and made proposals as to how a single system might work in practice.

The recent NAO report Feeding Back? Learning from complaints handling in health and social care (2008) also makes a number of points in this area. In reviewing complaints handling their survey found generally, that around 14% of those using NHS and social care services in the past three years were dissatisfied with their experience. Of these, only 5% dissatisfied with NHS services went on to make a formal complaint compared to one-third who made a complaint about adult social care services. The main reason cited for not complaining formally was that individuals did not feel anything would be done as a result. The NAO report noted that only 59% of survey respondents felt that their complaint had been received in an open and constructive manner. Drawing upon research carried out by the consumer watchdog Which on hospital complaints it was also noted that whilst most people were happy they had made a formal complaint, only 27% were happy with the way their concerns were dealt with. The report makes a number of recommendations on specific issues that currently need to be addressed both by the Department of Health and at a local level if the new complaints system is to be effective.


  Dame Janet Smith, Chairperson of the Shipman Inquiry, noted in her conclusions on past conduct within the GMC:

    Having examined the evidence, I have been driven to the conclusion that the GMC has not, in the past, succeeded in its primary purpose of protecting patients. Instead it has, to a very significant degree, acted in the interests of doctors. Of course, I accept that the GMC also has a duty towards doctors; it must be fair in all its dealings with them. But, in the past, the balance has been wrong and, in my view, the imbalance was due to a culture within the GMC, a set of attitudes and an approach that put what was seen as being "fair to doctors" ahead of protecting patients' (Shipman Inquiry Fifth Report 2004: 4570).

      Clearly the proposals in the White Paper "Trust Assurance" and the wide-ranging reforms to professional regulation in health, are an attempt to address the above situation, but I believe a number of gaps still exist as outlined below:

      — There is no mechanism in which patients can challenge the GMC if they refuse to investigate their case, apart from through the costly procedure of a Judicial Review that is beyond the means of most people. This meant that even when the Chief Medical Officer suggested that the GMC investigate the serious allegations in my case, there was nothing he could do when they refused to do this.

      — The Council for Healthcare Regulatory Excellence (CHRE) does not have the powers to review and intervene on individual cases despite the suggestion in the White Paper that this might become the case. Neither does the Parliamentary Ombudsman.

      — The lack of a body that can review miscarriages of justice or intervene when a complainant falls outside of the timescales or remit of an organisation with powers to investigate a complaint is greatly lacking. At the moment there is widespread evidence that victims of harm can go round and round in circles trying to navigate systems which can properly and independently investigate their complaint.

      — Despite the publication of the White Paper, on 13 June 2008, the CHRE issued a press release entitled: "Performance Review Makes Strong Recommendations For Improvements To The Nursing and MidWifery Council". This not only highlighted serious concerns about the inadequate operation of the NMC's fitness to practise processes, but also noted allegations about racism and bullying. The latter is seen as an issue, given serious concerns acknowledged by the Healthcare Commission about the disproportionate numbers of Black and Minority Ethnic (BME) staff who in one study were found to be 69% more likely to face disciplinary measures than white staff in relation to misconduct issues in health. The GMC also disciplines more BME doctors, but refused to investigate serious allegations of discrimination in my case against a white doctor. This raises questions about racism in the NHS and how it affects care and also raises questions about the application of a blame culture in health, that appears to be more likely to be directed at Black and minority ethnic staff.

      — This evidence about racism should also be seen in the light of reports by the HealthCare Commission (HCC) that BME patients and other groups such as those with learning disabilities receive worse healthcare and treatment. In 2006, this led the HCC to issue a press release entitled: "Healthcare Watchdog puts NHS Trusts on notice over compliance with race relations law". It is my submission that NHS trusts are still widely failing to comply with the Race Relations (Amendment) Act 2000, which has implications for staff and patients connected to patient safety. The Healthcare Commission is currently conducting a national review of race equality across the NHS.

      In concluding this section it is my view that issues to do with having appropriate governance and accountability systems and procedures in place in NHS in organisations are fundamental to creating a patient safety culture. However evidence suggests that these procedures still do not operate properly in many NHS organisations. This can result not only in harm occurring to patients from PSIs, but patients being doubly harmed through being unable to get explanations, justice and accountability once the original adverse incident has taken place (see Church and Vincent 1996; DOH 2003).

      Charles Vincent in writing about how this situation impacts upon patients has noted that:

    "Many people harmed by their treatment suffer further trauma through the incident being insensitively and inadequately handled. Conversely, when staff come forward, acknowledge the damage and take the necessary action, the support offered can ameliorate the impact both in the short and long term" (Vincent 2006:124).

  Sir Liam Donaldson also notes in Safety First that:

    "Consumers of healthcare are at the heart of patient safety. When things go wrong, they and their families suffer from the harm caused. Such harm is often made worse by the defensive and secretive way that many healthcare organisations respond in the aftermath of a serious event" (DOH 2006:30).


  Central to the recommendations in the Bristol Report was the view that increasing the participation of patients or parents and the public was important in developing a new safety culture and that this involvement might help to prevent the occurrence of errors and ameliorate the effects of harm (Secretary of State for Health 2001). Sir Ian Kennedy subsequently expanded upon the view about the importance of involvement after Bristol and as shadow chair of the predecessor organisation to the current Healthcare Commission. The point made in advocating the need for PPI in healthcare, was that patients should no longer be treated as passive and uninvolved individuals in their own care, but as partners with healthcare professionals. This he argued was because doctor and patient were both experts in their own fields, "the doctor in clinical matters, and the patient in his or her experience, feelings, fears, hopes and desires" (Kennedy 2003:1276).

This issue about addressing paternalism, as part of creating a safety culture in which patients and the public can be involved, was recently reinforced by Sir Liam Donaldson, the Chief Medical Officer, writing in the Journal of the Royal Society of medicine. He argued that addressing patient safety concerns still required further cultural change, and that one of the challenges was in relation to how patients were involved in their own care. He pointed out that whilst the NHS in the past was characterised by paternalism, "Tomorrow's patients will not be willing to accept the role of grateful and passive recipient of care. Recognizing and acting on the part that they and the public can play in shaping the NHS is vital. The quality and safety of care in the future depends on it" (Donaldson 2008:341).

  Whilst there is little in the literature on the experiences and views of harmed patients on patient safety concerns, what evidence that does exist suggests that these patients have strong opinions about the medical profession and safety issues and changing the system and see the issues differently from other patients. Allsop (2004) has pointed to what she calls protest groups who have formed as a result of adverse clinical events. She found that these groups were more likely than other health consumer groups to "view medical practices as paternalistic and oppressive and to see health professionals as people who withheld information and close ranks against patients when questioned" (Allsop et al, 2004: 751). Other evidence suggests that in developing a patient safety culture, issues to do with justice and accountability are seen as vitally important concerns (Davies and Shields 1999; Ocloo 2007). The demands from these groups therefore bring to the table issues that are very different to dominant perspectives shaping the current patient safety reforms.

  Post-Bristol, a number of important inquiry reports such as "Learning from Tragedy" (2007), part of the Governments response to the Shipman Inquiry report, have emphasized the importance of involving patients and the public in new organisational arrangements. The importance of involving and working in partnership with patients, carers and their families in all aspects of the patient safety agenda and after the occurrence of a patient safety incident has also been given a strong emphasis in "Safety First" (2006). Recommendation 8 of the report in particular states:

    "Accountability for patient safety rests with the Chair and Board of each NHS organisation. Each Board should therefore be expected to outline how it intends to discharge this responsibility. Importantly, each Board should also make clear how it intends to ensure that patients and carers play an integral part in all initiatives to introduce a patient safety culture change within the NHS" (Safety First 2006: 27).

  Yet eight years after the publication of the Bristol report (2000), growing evidence about practice on the ground suggests a lack of progress in involving patients and the public in the patient safety agenda. In 1999, the document "Clinical Governance: in the new NHS" set out clear expectations for NHS Trusts in developing PPI in this area. However evidence from two National Audit Office reports published in 2003 and 2007 looking at the progress achieved in implementing clinical governance arrangements in the NHS in both the primary care and hospital sector found that progress in developing PPI in this area was limited. Findings from a two-year pilot initiative, the Patients for Patient Safety (PfPS) project funded by the National Patient Safety Agency (NPSA) and run by Action against Medical Accidents (AvMA) also found a number of problems in this area. In particular a key finding from their project work was that whilst patients and the public were willing to work in partnership with NHS organizations they faced substantial barriers to real involvement (Ocloo, 2008).

  The Picker Institute (2006) has carried out the most systematic review of the literature looking at evidence for involvement in patient safety. A key point made with the review was that, "The UK has had a major programme to improve patient safety since 2001, but with little recognition of patients potential to take an active role" (Picker Institute 2007:6). It was also noted that historically the patient safety movement has overlooked the role of the patient and tended to view patients in a passive way as simply the victim of errors. In practice this had meant disregarding the various ways in which patients already contribute to their care (Coulter and Ellins 2006).

  This situation has meant in practice that harmed patients have struggled not only to highlight their concerns when affected by a patient safety incident, but also then found it virtually impossible to get involved in the mainstream patient safety movement in order to raise issues about change from their own perspectives. In mainstream patient safety conferences, patients and the public are rarely represented. The agenda does not include them, apart from as objects to be discussed and the harmed patient who wishes to raise issues about accountability will routinely be denied a voice, screened out and censored by most healthcare organisations.

November 2008

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