Unpacking the guidance – how we can best apply it Brendan Amesbury (St Wilfrid’s Hospice & St Richard’s Hospital) and Sarah Pearce (Coastal West Sussex CCG) Post LCP EOLC conference 14 May 2014

Tony Bonser, Chair of People in Partnership Group, National Council for Palliative Care and Dying Matters coalition “We’re at a turning point. End of life care is on the agenda. We have a chance, as never before, to get it right”

Leadership Alliance for the Care of the Dying Person – LACDP – interim statement January 2014 Starting point has to be a common understanding between patients, families sand professionals about what good EOLC looks like: hence extensive consultation LACDP will produce a prompt sheet to help professionals who care for dying people to consider the important elements of care CQC hospital inspections will include EOLC as one of eight core areas New NICE EOLC guidance by summer 2016

LACDP – second interim statement March 2014 Five priority areas for EOLC identified Service providers and commissioners will be expected to create the systems and learning opportunities that enable the priority areas to be implemented Organisations/professionals to review the care they deliver for dying people against these five priority areas, including considering how they will demonstrate delivery of each priority LACDP working on description of what dying people and those who are important to them should expect LACDP working on a statement of the responsibilities of health and care staff for delivering the priority areas

Summary of LACDP’s five priority areas 1.Possibility a person may die recognised and communicated 2.Sensitive communication 3.Dying person is involved in decisions 4.Needs of family explored, respected and met 5.Individual plan of care Note first 4 are all about communication … Expand those headings …

1. Possibility a person may die recognised and communicated The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly.

2. Sensitive communication Sensitive communication takes place between staff and the person who is dying, and those identified as important to them.

3. Dying person is involved in decisions The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.

4. Needs of family explored, respected and met The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.

5. Individual plan of care An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.

How have we begun to address implementation of the five priority areas this locally? Collaborative group, co-ordinated by CCG, established involving: CCG GP Sussex Community Trust Western Sussex Hospitals Trust Three local hospices Involvement with WSCC Health and Well-Being Board Consultation with care homes

National Council for Palliative Care conference November 2013 EOLC strategy: New ambitions Conference set up 5 years after publication of the EOLC strategy in 2008 What is there to do in the future?

National Council for Palliative Care report from March 2014 EOLC strategy: New ambitions In the same way as no replacement for LCP, no refreshed EOLC strategy, but NHS England expected to publish a “new set of ambitions and actions” CWS commissioners and providers expect to follow these locally once published

Key challenges identified at NCPC conference 1.Personalised care must be commissioned on the basis of local needs 2.Challenges across all care sectors in working together: defining roles & accountabilities 3.Improving data and intelligence about EOLC 4.Care must be universal, for everyone who needs it 5.Better conversations about death and dying 6.Creating compassionate communities

Recommendations for action in NCPC report 1.New set of ambitions and actions for EOLC must have high level of authority and ambition 2.New ambitions & actions for EOLC must link to other national priorities eg dementia 3.Must be a “proper national conversation about dying” as in Neuberger’s More Care, Less Pathway 4.Measure of death in usual place of residence is a useful proxy measure, but need a means to measure individual quality 5.Plans submitted to Better Care Fund should always address EOLC 6.Good EOLC must be available for everyone

How are local providers and commissioners engaging with challenges and recommendations from NCPC report? 1 Engaging with public about dying – eg WSHT Dying Matters day; hospice open days; St Barnabas bus Promoting non-cancer SPC referrals – eg SWH KPI of 10% non-cancer or MND referrals in (achieved 13%) SPC services are keen to encourage EOL dementia and old age/frailty referrals if meet referral criteria

Single SPC referral criteria at WSHT, SWH and SBH (similar for Midhurst Macmillan Service) Referrals for specialist palliative care are accepted for patients who have active, progressive, advanced disease of any diagnosis with a probable prognosis of less than 12 months have a complex level of need exceeding the skills and/or capacity of the current caring team and are over 18 years of age Supportive care for those earlier in diagnosis Note “any diagnosis” If referrer not sure, please phone and ask!

How are local providers and commissioners engaging with challenges and recommendations from NCPC report? 2 Promoting Advance Care Planning for people with progressive disease “If you have another episode of …. what do you want? Active hospital care? Or stay in care home?” Encouraging healthcare professionals to talk prognosis to patients when well, not when ill “Just in case” medications in patients homes

Form is available on websites eg SCT, SWH Use in community or acute COPD, heart failure, dementia SP next slides

How are local providers and commissioners engaging with challenges and recommendations from NCPC report? 3 Two year project at CCG to look at EOLC pathway Working collaboratively – eg hospices funding new SPC CNS posts at WSHT Working collaboratively – eg CCG funding admissions avoidance pilots with Sussex Community Trust, hospices and WSHT

What has the local group drafted to address LACDP proposals? 1.Guidance for the patient in last few days of life – single one page flow chart for use by all organisations which includes all five priority areas 2.Guidance on outcomes which highlight care areas needing at least daily review in a dying person. Includes basic initial drug guidelines 3.Each provider will need to determine how the individual plan of care for each dying person will be implemented in their service Recognise training will be needed once documents agreed

Consultation today on how the approach feels to the audience Copies of the two guidance sheets are in your packs Your help! Small groups to discuss and provide us with feedback Integrate your feedback in the local groups plans

Consultation today on how the approach feels to the audience Is there anything we’ve overlooked?

Consultation today on how the approach feels to the audience How should training be accomplished? What approach works best in your area?