1. PATIENTS FOR PATIENT SAFETY Pilot PROJECT

2. 2 My Background Previously a lecturer in Social Work Chair of the Royal Brompton & Harefield NHS Trust PPI Forum Sit on Trust Board with observer status, Audit and Risk Committee, Complaints Committee & Equality and Diversity Committee Member of DOH’s Information & Clinical Governance Subgroups - Professional Regulation & Patient Safety Programme Manager of the PfPS Project Just completing PhD on ‘Medical Harm & Patient Empowerment within the NHS’ WHO Patient Safety Champion Just appointed to a research post at Kings College in their Patient Safety & Service Quality Research Centre

3. 3 Key Policy Drivers for PPI in Patient Safety ‘Around the world, healthcare organisations that are most successful in patient safety are those that encourage close cooperation with patients and their families’ ( Safety First, DOH2006). The report also recommends: Each board should ‘make it clear how they intend to ensure that patients & carers play an integral part in all initiatives to introduce a patient safety culture change within the NHS’ (Rec 8); ‘The active involvement of patients & their families should be promoted by establishing a national network of patient champions who will work in partnership with NHS organisations & other key players to improve patient safety’ (Rec 13).

4. 4 Key Policy Drivers for PPI in Patient Safety There is a need to involve patients and the public in all aspects of planning, organisation and delivery of healthcare: ‘To be involved the public had to be empowered’. E.g. given proper info to formulate views, be listened to and have views acted upon ( Bristol Report 2001 ).

5. 5 Key Policy Drivers for PPI in Patient Safety ‘There is an increasing recognition that patients should be seen not as “passive” recipients of healthcare interventions chosen & delivered by health professionals, but as active participants with their own values & beliefs. Patients & carers therefore have a vital role to play both in helping to define what counts as “quality” in healthcare …… and in drawing attention to unacceptable standards of care’ (Safeguarding patients, HM Govt 2007- response to Shipman & other inquiry reports). A specific duty on all organisations to involve patients/public in the planning & development of services. (Section 11 of the Health & Social Care Act 2001).

6. 6 Evidence of a Lack of PPI in Patient Safety: Only 24% of Trusts routinely informed patients involved in a reported incident and 6% did not involve patients at all (House of Commons (2006) Select Committee on Public Accounts)

7. 7 Evidence of a Lack of PPI in Patient Safety: The following reports found that PPI in clinical governance processes in hospital Trusts and Primary Care was limited. Achieving Improvements through Clinical Governance (NAO 2003). Improving Quality and Safety: progress in implementing clinical governance in primary care. Lessons for the new Primary Care Trust’s (NAO 2007).

8. 8 Evidence of a Lack of PPI in Patient Safety: In a review of strategies to involve patients in improving the quality of healthcare, the Picker Institute noted about patient safety 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)

9. 9 Background to The Patients for Patient Safety (PfPS) Pilot Project  Joint initiative between the National Patient Safety Agency & the charity, Action against Medical Accidents  Aims to develop the role of patients and the public in patient safety work in the NHS  Funded for two years by the NPSA from April 2006 to March 2008  Project Managers: Josephine Ocloo and Louise Price

10. 10 Key Project Objectives:  To build a network of patients & the public (including those affected by medical harm) wanting to be involved in patient safety work & to develop good practice.  Develop a core training module for network members on key aspects of patient safety  Develop local strategies for PPI in patient safety by working with 2 NHS sites:

11. 11 The Project’s Methods: To identify good practice eg’s of PPI in patient safety through letter to NHS Trusts; Holding meetings with 4 NHS Trusts & working closely with 2 in more depth; Developing a Patient Safety Network for Patients & the Public; Running a Training Module for Patients & the Public; Holding 2 workshops with staff to explore their support needs;

12. 12 Some Key Findings: Trust A Some very serious PSI’s had occurred over recent years, providing the momentum for looking at the way the Trust responded to such incidents: The Trust eventually agreed to focus primarily on the area of suicide and to identify key issues and factors: From the perspectives of relatives/carers bereaved through suicide From the perspectives of staff involved with the aftermath of a suicide and dealing directly with bereaved relatives, And; To look at the implementation of the Being Open guidance when an incident occurred.

13. 13 Workshop with Patient Relatives and Carers 22 relatives identified by Trust for contact 2 relatives expressed interest in being involved (later contacted by a 3rd person) 2 relatives provided written accounts of their experience but did not wish to participate 3 said did not wish to be involved 15 did not respond & unable to contact by telephone

14. 14 Possible reasons for non-response: Families/carers unable to obtain resolution and closure Unresolved issues with the Trust No ongoing relationship with the Trust Patients/relatives feeling there is not going to be any personal benefit to them as a result of their input or that time/expenses will not be properly compensated Going back 3 years may have been a factor in being able to contact families How families are identified and the dangers of screening out those seen as too difficult to work with, whose experiences might well provide invaluable learning for the Trust.

15. 15 Strategies for the Future Might include: Seeking the views of patients/relatives/carer's through individual interviews relatives invited more informally to share their experiences with staff or to attend a meeting with staff members Written stories. Involving people at risk of suicide & carers. This might act as an incentive to get involved if it will help patients manage their own situation more effectively as well as helping others.

16. 16 Workshop With Staff: After a Suicide Staff often devastated as often knew patient well Staff blamed themselves as felt might have prevented the suicide Staff feared being blamed by others, or through a formal inquiry Staff found involvement with families after a suicide exceptionally difficult because of high level of emotions/concerns involved & concern about saying the wrong thing & a fear of litigation Staff felt they or their colleagues often not offered enough support. But acknowledged they found it difficult to take up support if they thought it would put pressure on other staff

17. 17 Follow-up Workshop with Staff Key Aims: To develop ways of supporting staff following a serious PSI; Implementing Being Open guidance

18. 18 Follow-up Workshop with Staff: Key findings Staff need space to debrief and reflect upon their feelings after an incident which can be facilitated in different ways deemed most appropriate by staff (through counselling, group support or one to one sessions with a supervisor. Staff felt not always properly informed on what was happening after an incident or interviewed and therefore could not properly and appropriately support relatives Staff/teams affected by an incident were not always part of a wider investigation or RCA analysis after an incident so did not know what was happening, about key outcomes and learning from PSI.

19. 19 Follow-up Workshop with Staff: Implementing the Being Open guidance. Staff wanted to know who was responsible for implementing Being Open and exactly how open they should be. For example who should give information to families/carers, how much and what type It was felt that this process needed to be clearer at team level, so that everyone knew 'who knew what' and 'who was doing/saying what’. It was seen as important to involve families in any RCA’s or investigations, & for clarity on how this was done, & who was doing it and feedback given to the staff team.

20. 20 Some Key Findings: Trust B To explore a model for PPI in patient safety work based upon empowerment. To introduce another strand into the Trust’s patient safety programme. To identify patients & the public to become involved in the Trust’s patient safety work.

21. 21 Empowering PPI in Patient Safety: Key Questions/Points from Launch Event: Is an empowered patient a safer one? Partnership - The importance of seeing patient/carers as part of the team and their needs at its centre Addressing imbalances of power in patient/staff relationships How individuals can be made passive as patients Supporting staff as part of empowering patients

22. 22 Attempts at Empowerment: The Hand Hygiene Project Working with those with a poor healthcare Experience (eg affected by a PSI’s or who have made a Complaint) Workshop with Patient Governors

23. 23

24. 24 Working with those with a Poor Healthcare Experience: Some Questions to Consider How do we feel about working with those with poor experiences of healthcare ? What are our fears about this involvement ? How can we address these fears ? What are the barriers in our Trust to this involvement ? How can we address these barriers in the future ?

25. 25 NPSA Model for Working with those Affected by Harm To not put patients and staff together too soon in the process Bring together a mixture of patients from different Trusts & have a workshop off site Identify Trust area's most likely to cause harm to patients and then to select/profile patients according to these areas Draw upon voluntary/community sector to identify diverse patient groups Staff attending workshops there to listen only and not to defend the Trust Focus of the workshop is on learning rather than on accountability. This should not preclude patients from expressing what they think went wrong Independent facilitators are used Permission letters from patients to indicate if want further involvement Learning from workshops to be shared more broadly with Trust staff to see if stories resonate & to allow for reframing & clarification of the problem(s).

26. 26 Workshop with Governors on Developing PPI in Patient Safety Some Points made: Staff don’t always ‘hear’ Patients unable to make their points Need to understand role, function of committee and what is required of patients & the public Jargon, language can be a problem Problems of tokenism & not feeling valued Communication needs to be more two way and in partnership PPI reps need to be informed about follow-up action when involved PPI reps need to feel it is okay to challenge

27. 27 Tackling barriers to involvement on committees: Some guidelines Need for proper Induction Terms of reference of committee & other relevant information should be given well in advance of meeting At least 2 patient reps should be invited to avoid tokenism Patient reps should be properly introduced to committee members Training should be offered if appropriate The meeting should be conducted without the use of unnecessary jargon or terms should be explained or the patient given info after the meeting Patient reps should be encouraged to participate in the discussion & not be penalised if they challenge issues There should be proper reinbursement of expenses which might include travel, childcare & for time incurred Reimbursement Action: Proposal for patient representation on Risk Management Committee

28. 28 The Patient Safety Network Over the life of the project various meetings were held with PPI representatives on a range of issues to do with patient safety This included holding a 1day training event on patient safety, follow-up event on PPI in clinical governance & 1 day conference on complaints/regulation & the AHC Meetings were well attended by PPI representatives from patient forums, voluntary groups & by individuals directly affected by medical harm.

29. 29 The Patient Safety Network: Some Key Findings PPI representatives were well informed on health issues, but not on Trust Patient safety work Expressed a strong interest in safety, but viewed the safety agenda as about regulation & accountability as well as learning & improvement Were keen to get involved but needed proper help to do so, eg clarity on opp’s for involvement, info, training, expenses Wanted to see a partnership approach with h/care professionals where their views would be listened to, taken into account & acted upon

30. 30 The Way Forward More needs to be done to develop a range of strategies for involving, supporting & empowering patients/public in the patient safety agenda Involving & learning from those with poor experiences of healthcare/ affected by PSI’s is particularly important Staff need to be supported to work in partnership with patients/public

31. 31 Developing a Model for PPI in Patient Safety A starting point to think about PPI on different levels, with different strands Organisations should provide info on risks & safety to the public, work with individual patients & develop involvement at a strategic level

32. 32 Developing a Model for PPI in Patient Safety: Some Questions To Explore: What are patient safety concerns within the organisation from patients’ perspectives? What are patient safety concerns within the organisation from staff perspectives? What are the key components of a patient safety culture in the organisation How can patients and the public engage with and be involved with this agenda and what are the barriers to this involvement? How might different groups be affected? Are people discriminated against and disempowered? What about those who have had adverse experiences of healthcare?

33. 33 Messages from Bristol ‘The public are entitled to expect that means exist for them to become involved in the planning, organisation and delivery of healthcare’ ‘For a healthcare service to be truly patient-centred it must be infused with the views and values of the public (as patients past, present or future). The public must be involved. To be involved, the public must be empowered……’ (Bristol Report 2001: 400)