Minutes:
(1) Anne Tidmarsh made a short presentation on the issues surrounding “End of Life Care”, illustrated with statistics and graphs.
(2) At the conclusion of the presentation, the meeting was invited to address the following questions in its table discussions. The questions were:-
· Do Kent County Council and the Clinical Commissioning Groups need to do anything differently?
· If they do, what should be done differently? What does the Shadow Health and Wellbeing Board think about access to specialist palliative care services for non-cancer-related end of life care?
· Integrated Teams, Risk Stratification, Single Point of Access, Carers’ support, Tele-technology and social care support would be available as part of integrated commissioned services; should this form part of the local Health and Wellbeing Boards’ strategies?
· How should key outcomes be included in the Health and Wellbeing Board strategy?
(3) A summary of the table discussions is as follows:
· Need to ensure that appropriate systems are in place for patients who do not wish to be resuscitated.
· It is difficult to “pin down” what good practice is in this area – we all need to work together on this issue.
· Important to use the Patient and Public Groups in a more structured relationship with patients and their families.
· There should be appropriate advanced care planning; this should be done across the Community Services, including Health and Social Care.
· The policies surrounding “Do not Resuscitate” should be simplified.
· Early links with the patient and family “Patient Knows Best” was key, as was anticipatory care planning.
· Co-ordination of services and speed of response was crucial for end of life care.
· Services needed to be available 24 hours a day – they do not need to be in person.
· There needs to be a better flow of information across the Health and Social Care economy.
· Look at alternative ways of supporting patents and families 24 hours a day – especially palliative care.
· Sharing good practice.
· Getting the pathway right – having clear procedures between the South East Coast Ambulance Service, Police and nursing homes.
· Managing Public Views – some people feel very comfortable discussing what they would like at the end of their life, whereas others do not.
· The East Kent pilot and the West Kent Strategy need to be brought together and shared.
· Some of the data in the presentation – what do CCGs do about Active Care Planning?
· Starting a dialogue at the appropriate time with the patient and family members should be carried out in a systematic way.
· There were issues of poor communication with partner agencies, the Police, ambulance service, etc, which need to be addressed.
· It is a bureaucracy and is operating in a way which is not appropriate.
· Cancer is a linear illness, whereas others are more erratic and do not follow a predictable course. In these circumstances, Do not Resuscitate would not be appropriate.
· Potential to have a “Death Card”, similar to the kidney donor card.
· Capacity within hospices and the funding for additional hospices
· Collectively, the outcomes need to be defined for Local Health and Wellbeing Boards.
· Need to query and interrogate the data and outcomes.
(4) The Chairman and Shadow Board concluded that the following were the main issues arising from the table discussions for starting a dialogue:-
(a) the Patient and Public Groups were key groups for engagement. The involvement of these groups would be useful for the engagement with patients and their families in these very difficult conversations;
(b) re-examining and interrogating the data, including how the pilot in East Kent has worked, vis a vis the Strategy in West Kent;
(c) the linkage between the “Patient Knows Best” and the power to resuscitate;
(d) defining the outcomes for Local Heath and Wellbeing Boards and the relationship with this Shadow Board; and
(e) reviewing the pathways for End of Life Care including the involvement of other agencies in the pathway, e.g. Nursing Homes, Police, etc.