Issue - items at meetings - Sussex Integrated End of Life and Dementia Care Sussex Pathway

Report of Chief Operating Officer (copy attached).

Item deferred.

38.1    The Board noted that this item had been withdrawn from the agenda.  The Adult Care & Health Committee held on 18 March 2013 had agreed to defer consideration of the proposals to the next meeting of the Committee on 17 June 2013 in order for a revised report to be submitted which reflected the concerns expressed by Members.

Report of Chief Operating Officer (copy attached).

(1)      That it be agreed to defer consideration of the proposals to the next meeting of the Committee on 17 June 2013 in order for a revised report to be submitted which considers the concerns expressed by members of the Committee. 

49.1    The Committee considered a report of the Chief Operating Officer, Clinical Commissioning Group which requested approval of the Pan Sussex Integrated End of Life and Dementia Care Pathway.  The pathway had been developed through multi-agency and multi-disciplinary stakeholder group collaboration across Sussex as part of the End of Life Care in Dementia Regional Innovation Funded project for NHS Sussex.  It was part of the Joint Dementia Plan for Brighton and Hove. The Brighton and Hove CCG Strategy Group supported implementation of the pathway as agreed at the meeting on 8 January 2013. 

49.2    Councillor Marsh stated that she had mixed feelings about the word pathway.  She welcomed a strategy that treated people as early as possible; however she questioned whether the best medicines would be available for early on set dementia.  Certain medicines that were seen as effective were not available.  Councillor Marsh made the point that sometimes people with dementia were robust and end of life could be a long way off.  She would be worried if the plan had anything to do withdrawal of fluids and nutrition.   

49.3    The Commissioning Manager explained that she had brought along copies of the consensus statement on the Liverpool Care Pathway.  This had been supported by the Alzheimer’s Society.  They stated that in no way should fluids or nutrition be withdrawn from patients.   The Commissioning Manager was happy to circulate this paper for discussion.  There was robust training and support for the pathway.  The new memory assessment service would provide early diagnosis and support.  The Commissioning Manager stated that she had spoken to patients’ groups regarding early on set dementia.  The pathway was considered appropriate.

49.4    The Chief Operating Officer stressed that part of the strategy was to diagnose early in order to provide effective treatment as early as possible.

49.5    Councillor Barnett stated that she believed the Liverpool Pathway did withdraw fluids and food.  She had observed this happening to people. 

49.6    The Chief Operating Officer replied that within the pathway there was a full discussion with people about what the pathway meant for the person and the family.  Councillor Barnett made the point that dementia was often diagnosed too late for the person to be involved in decisions about their future.

49.7    Councillor Mears stated that she did not support the pathway in any way and wanted to see a revised report she was happy with.   She considered the Liverpool Pathway involved the removal of fluids and food.  She was not happy with the tone of the report and considered that the emphasis should be how people were cared for.  Councillor Mears was concerned that the membership of the Brighton and Hove Stakeholder Group only had one lay member.  She referred to page 38 of the agenda – Appendix 1 Summary of Pathway – Section 5 - which stated “Implement Liverpool Care Pathway as appropriate.” 

49.8    Councillor Jones broadly welcomed the proposals.  He thought it was a good pathway but acknowledged that there were issues that arose towards the end of life.  He welcomed early intervention with the emphasis on the person who needed care.  He stressed the importance of early diagnosis and directing people to appropriate services and medication.  Treatment worked best in the early stages.  However, he considered that it would be useful to have more information about the Liverpool Care Pathway.        

49.9    The Chief Operating Officer stressed that the pathway was about early support for people and their families.   Discussions would be held at an early stage.  

49.10  Councillor Norman agreed that it was important to work with people in the early stages of dementia.  The only mention of the Liverpool Pathway was on page 38 of the agenda and if this caused a problem he suggested the reference to the pathway should be removed.  Councillor Norman stressed that the Liverpool Care Pathway was only as good as the people who used it and should not be used without education and training.  Councillor Norman thought that the pathway was a good step forward to help people in the last stages of their lives.  It did not suggest withdrawing anything from a person. 

49.11  Councillor Meadows agreed that there were good proposals in the report, particularly in relation to early intervention and diagnosis.  However, she had witnessed her father being given a sponge on a stick rather than fluids and had seen how distressing this could be.  Councillor Meadows was concerned about how the pathway would be implemented.  She was unhappy with the word implement and stated that if this word was left out she might be able to support the strategy.  The emphasis should be on discussion with the person and their family.  Councillor Meadows considered that the Older Peoples Council should be consulted about the proposals and noted that they were not mentioned in the report.   

49.12  Councillor Wilson questioned what happened when someone entered the pathway at a late stage and could not make a decision.  

49.13  The Commissioning Manager replied that the aim was for people not to be in that position.  The emphasis was on early intervention and for a decision to be made in conjunction with carers or families on what they would like to happen.          

49.14  Councillor Wilson stated that it might have been more palatable if there had been mention of the pathway earlier in the document.   She was concerned that the pathway might be implemented at a late stage.

49.15  Councillor Marsh considered that there should be more weight on the patient service user.  

49.16  Councillor Powell considered that words were very important and needed to be clear and agreed.  She referred to Appendix 1 – Phase 3 and asked for this to be reworded as not everyone had a family.

49.17  The Chair noted that the committee appeared happy with the work proposed for early diagnosis.  However, he suggested that a decision on the report be deferred in order to consider the concerns expressed by members.  The Chair suggested that the Chief Operating Officer and the Commissioning Manager should meet with him and the Opposition Spokespersons to discuss a way forward for a revised report.  A draft of the revised report could be circulated to all members of the committee. 

49.18  Councillor Mears stated that she was concerned that the Older Peoples Council had not been consulted and did not appear aware of the consultation in the city.  The Commissioning Manager stated that she would check exactly who had been consulted and would ensure that the Older People’s Council were consulted as appropriate.  

49.19  RESOLVED - (1) That it be agreed to defer consideration of the proposals to the next meeting of the Committee on 17 June 2013 in order for a revised report to be submitted which considers the concerns expressed by members of the Committee.