Agenda item - Liver Disease and Palliative Care

Presentation by Jo Harvey-Berringer and the Liver Trust on liver disease and local palliative care (verbal).

6.1       This item was presented by Jo Harvey-Barringer. Dr George Findlay (University Hospitals Sussex NHS Foundation Trust [UHSx] Chief Executive); Professor Catherine Urch (UHSx Chief Medical Officer); Dr Andrew Heeps (UHSx Chief Operating Officer and Deputy Chief Executive) and Peter Lane (RSCH Hospital Director) joined the meeting remotely. Ms Harvey-Barringer had asked to address the committee on her experiences of the care provided to her wife, Joanne, after she was diagnosed with liver disease; and on problems she had encountered accessing palliative care for her partner in the last months of her life.

6.2       Ms Harvey-Barringer outlined the progress of her wife’s care, from initial diagnosis to her eventual death. Ms Harvey-Barringer described a number of instances where aspects of care, communication, or the attitude of staff were of an unacceptable standard. In particular, many aspects of hospital care did not allow Joanne the dignity and respect she was due; and although community palliative support was excellent, there was insufficient hospital-based support.

6.3       The Chair thanked Ms Harvey-Barringer for addressing the committee, noting that it must take a lot of courage to speak in public about such distressing experiences.

6.4       Professor Catherine Urch (UHSx Chief Medical Officer) told the committee that Ms Harvey-Barringer has raised a number of important points and thanked her for sharing her testimony. Professor Urch offered to meet with Ms Harvey-Barringer to discuss what the Trust can do to change. Dr George Findlay (UHSx Chief Executive) reiterated that the Trust was happy to follow up on all of the issues that Ms Harvey-Barringer had raised.

6.5       Cllr Wilkinson noted that patients with liver disease often require extensive palliative care. He asked that the committee focus on local provision of palliative and end of life care at a future meeting.

6.6       Geoffrey Bowden (Healthwatch Brighton & Hove) told members that he used to help run the GB Association for the Study of the Liver, and was acutely aware of the important role palliative care plays in liver disease. Mr Bowden also noted that Healthwatch Brighton & Hove deals with numerous issues relating to dignity and respect. He offered to meet with Ms Harvey-Barringer to discuss how Healthwatch might assist her.

6.7       Mo Marsh (Older People’s Council) supported calls for palliative/end of life care to be scrutinised by the committee.

6.8       Cllr Galvin asked whether early primary care diagnosis may have helped Joanne. Ms Harvey-Barringer responded that as far as she was aware, the GP had done everything they should: prior to her diagnosis Joanne had been receiving regular liver function tests due to some thyroid issues.

6.9       Cllr Evans told members that no one should face discrimination because of perceptions that their illness may have been partly caused by their own behaviour. She echoed calls for the committee to scrutinise palliative/end of life care.

6.10    Cllr Baghoth noted that it was sometimes the case that patients make a choice not to receive much information about their condition. Ms Harvey-Barringer responded that this was not the case with Joanne; although Joanne was sometimes forgetful because of her illness, she did want information, and Ms Harvey-Barringer helped her by leaving lists of questions with her. However, this did not lead to improved communication with hospital staff.

6.11    The Chair thanked Ms Harvey-Barringer for her attendance at the meeting and noted that the support officer would make introductions to Professor Urch and Mr Bowden so they could follow-up with Ms Harvey-Barringer outside the meeting. The Chair also read out a statement from the Sussex Integrated Care Board:

ICB statement on Palliative Care

The NHS Sussex Palliative and End of Life Care (PEoLC) commissioning team would like to thank Jo Harvey Barringer for raising concerns regarding the care her late wife Joanne received following a diagnosis of cirrhosis of the liver. We are sorry that your experience of care did not live up to the high quality we would wish for people across Sussex.

The palliative and end of life care services that NHS Sussex commission are intended for all people to access irrespective of diagnosis and are not commissioned solely for those with a cancer diagnosis. We are therefore saddened to hear that Joanne’s non-cancer diagnosis appears to have been a barrier to her receiving that high quality of end of life care we strive for.

We continually work to improve the care that the population of Sussex receive at the end of their life, and consciously work in a way that is inclusive of those with non-cancer as well as cancer diagnoses. For example, by working together we have now been able to launch a Pan Sussex Standard Operating Procedure (signed up to by all providers) with a full suite of supporting documentation to deliver safer and more consistent PEoLC (palliative & end of life care) medication for adults with any condition being cared for in the community.

Looking forward we are working to implement a Sussex-wide all hours PEoLC (palliative & end of life care) co-ordination hub. The introduction of this hub should enable the experience of those being cared for in the community to be of a significantly higher standard than Jo has described regarding her late wife’s care. It will be a part of the work being developed within in the formation of  Integrated Community Teams (ICT) in Sussex.  The initial focus of ICT Development will on be about improving care and support for those with complex needs. Many of those with PEoLC (palliative & end of life care) needs will be included in that first cohort so NHS Sussex is confident that this will improve the care for that sector of our population.

To provide further detail of the way in which we have been working to improve the provision of PEoLC (palliative & end of life care) care.

The NHS Sussex PEoLC (palliative & end of life care) team co-ordinates a Pan Sussex PEoLC (palliative & end of life care) Programme Oversight Group, which convenes every 2 months, with stakeholders across the whole Integrated Care System represented. This group looks at PEoLC (palliative & end of life care) provision for people of all ages with the aim of identifying ways to improve service provision.

The group developed a Sussex PEoLC (palliative & end of life care) strategic action plan to reflect a number of workstreams being undertaken which in addition to those already highlighted include:

• The introduction of the ReSPECT process (Recommended Summary Plan for Emergency Care and Treatment) to facilitate the creation ReSPECT plans to reflect patient’s wishes for the care they receive when they have health crises and cannot express their views in those crisis situations. This supports patients to receive the level of care they wish for in their preferred place of care.
• Input into service specification for the Frailty and End of Life Care Locally Commissioned Service to improve identification of those who are likely to be in the last year of life in the Primary Care setting, allowing for anticipatory care planning conversations to take place in a timely fashion to support the delivery of the right care in the right place.
• Co-ordination of an education programme, funded by NHS Sussex, and delivered by Hospice colleagues to support the whole Sussex workforce involved in the care of those with PEoLC (palliative & end of life care) needs, including for staff working in the social care sector.

These agreed workstreams are our starting ambition to achieve our collectiveaim in Sussex ‘to continue to make the last stage of a person’s life as good as?possible, through working together confidently, honestly, and consistently to help each?individual and the people important to them’.   We acknowledge there is still work to be done and all feedback on experiences, negative as well as positive,  is considered as we reflect and work together to improve care for people at the end of their life.

6.12    Members agreed that palliative/end of life care should be added to the committee work programme, and that scrutiny of this issue would be informed by the work that Healthwatch Brighton & Hove has already undertaken.