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Caldicott Principles & Information Sharing in End of Life Care

Putting personal experience first

Tony Bonser,
Forum Member for Dying Matters, Volunteer, Hospice UK, Member of the NHS End of Life Care Programme Management Board, Vice-chair of Trustees, St Catherine’s Hospice Preston
Tony is Vice-chair of trustees of St Catherine’s Hospice, Preston, Lancashire and Chair of the Patient Involvement committee. He is a fund-raiser for Macmillan Cancer Support and a volunteer for Hospice-UK. He is also North West Local Champion and a forum member for the Dying Matters Coalition, a national group of professionals and lay people committed to furthering a broad public discussion about death and dying, and a member of the Lancaster Compassionate Communities project. He is a lay member of the NHS End of Life Care National Programme Board, which monitors all EoLC projects and initiatives nationally. He contributed to the recently (2018) published second edition of “Advance Care Planning in End of Life Care. He has contributed to a number of research projects, including looking at family and carer needs, EoLC for those with addictions and accessible language in EoLC. He speaks and writes on end of life care issues, and campaigns for better communication between professionals and patients.  He has broadcast on television and local and national radio on end of life care issues.

Tony says what do you want as a patient and as a carer?

  • To be treated as a person
  • To be listened to
  • To be given a choice
  • To understand and to be understood

Pre-event abstract
Patients are people too. I am involved in EoLC because of my personal experience caring for my son during his terminal illness. I dream we can work towards a system of fully integrated, holistic care for those near death. This will involve a culture-change in the relationship between medical professionals and patients/carers, in line with the patient-centred philosophy embodied in the NHS Constitution, and with the recommendations of the Francis Report, the Neuberger Report, “One Chance to Get it Right,“ and the NICE guidelines 2016, seeing patient and professional in a partnership, defining and meeting the perceived needs of the patient. Communication will be central to this development. Professionals and patients must evolve a common language comprehensible to both, and an atmosphere in which patients and carers feel empowered to become involved in the decision-making process, and thus to take back some control of their condition and its management. Great sensitivity on the part of the professionals as to the emotional effects of their discussions on patients will be needed along with an understanding that everyone is an individual, with specific and personal needs, and that “one size fits all,” will not meet their needs.

Full power point presentation

Improving information sharing whilst ensuring patient confidentiality at the end of life 
Dr Patricia Needham
, Medical Director and Consultant in Palliative Medicine, Dorothy House Hospice Care and St Peter’s Hospice, Caldicott Guardian and Responsible Officer, Dorothy House Hospice Care
After qualifying from St. George’s Hospital Medical School, University of London, in 1986, Tricia gathered a range of experience in General and Geriatric Medicine, Psychiatry & Oncology, whilst gaining her membership of the Royal College of Physicians. She spent a period of 15 months working at St. Joseph’s Hospice, London before joining Dorothy House Hospice, Bath, initially as a Senior Registrar, before becoming a Consultant there in 1995. She became Medical Director and Caldicott Guardian in 2011. Tricia is also Responsible Officer for Medical Revalidation for both Dorothy House Hospice Care and St Peter’s Hospice. Tricia balances her clinical work with a strategic role on the Executive Team at the hospice and throughout the locality. 

Patricia asks - What do we mean by Confidentiality ?
“A situation when one person discloses information to another in circumstances where it is reasonable to expect the information will be held in confidence.”

  • Common Law Duty of Confidence
  • Professional Code of Conduct

Pre-event abstract
Caldicott Principle 7 makes it clear that our duty to share information is as important as the duty to protect patient confidentiality. Nowhere is this as important as when a person is at their ‘end of life’ (whether we mean by that likely to be within weeks, months or even years of death).
Information can often be usefully shared across, and between, different organisations, in order to support the provision of safe, high quality, timely  care and to reduce duplication of effort. Sharing information can improve the co-ordination of care and mean that an individuals end of life care wishes are more likely to be respected and achieved. It can also reduce multiple and inappropriate admissions. The common law duty of confidentiality is said to be broken if information shared during a consultation in the expectation that it would be held in confidence is subsequently passed on to others. Hence the importance of explaining the reasons, and potential, for sharing sensitive information in a way that is understandable to our patients and their families. Information can be shared in many ways – verbally, via paper or electronically. It may involve the use of separate clinical databases or be fully integrated into one system. GDPR and the new Data Protection Bill have clarified the different legal basis behind sharing Personal and Sensitive Personal Data, which will vary depending on the situation. Our use of the word ‘consent’ will need to change.
I will identify many of the issues that I as a hospice Caldicott Guardian have become aware of and will cite my own experience in terms of the challenges of working within a complex geographical health and social care structure; sharing information with other SystmOne users, and the various different interoperability projects that I am aware of within our catchment area. The opportunities of rising to these challenges however outweighs them, as any improvement in systems, processes and practices that can ultimately improve the care our patients receive, is to be welcomed.

Full power point presentation 

Ethical decision making and information sharing in the acute Trust
Dr Karen Le Ball
, Consultant Geriatrician, NHS Highland Chair, UK Clinical Ethics Network
Karen Le Ball is a geriatrician in NHS Highland and has been chair of the UK clinical ethics Network for 4 years. This is an organisation which supports clinical ethics committees in Trusts/hospital boards and other organisations. She has recently stepped down after a tenure of almost 5 years as head of school of medicine for London and South East under the Health Education England umbrella. Here she had responsibility for overseeing the quality of higher specialty training posts in 24 specialties in London. This included supporting doctors in training at all levels. Karen trained in medicine at University College London and undertook her specialist training in London and Essex. She has a MA in Medical ethics and Law from Kings College London and a Level 7 Certificate in executive coaching and mentoring from The Institute of Leadership and Management 

Karen speaking today says

•Everyone is different
•Difficulties usually occur when there is a difference of opinion
•Think dignity
•It is not easy

Pre event abstract
I intend to address both ethical principles and also some frameworks which may assist the decision maker in complex scenarios in general and specifically in an acute settings I then hope, with examples to help the audience consider the ethical dimensions of retaining confidentiality and dignity at the end of life in an acute setting

Full powerpoint presentation

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