1. Preferred Priorities for Care Dr David Plume Macmillan GP Facilitator Central Norfolk

2. Preferred Priorities for Care Formerly known as Preferred Place of Care Lancashire and South Cumbria Cancer Network. Originally patient-held form for people living in the community with a cancer diagnosis Focus on where people wanted to be cared for at the end of their lives. Now Preferred Priorities for Care. Place only one possible priority. Priorities, preferences and wishes also important. ID’d within the NHS End of Life Care programme as an example of an advance care plan.

3. Preferred Priorities for Care Advance Care Planning “process of discussion between an individual and their care providers.” (The PPC Document: Guidelines for Health and/or Social Care Staff) Add “Continuing” What are this patients feelings on their disease, what concerns do they have, what goals are they looking to reach, do they understand their illness and its prognosis, do they have particular care preferences, now and in the future? Know your patient!

4. Preferred Priorities for Care Not legally binding but MCA (2005) Any person making a decision regarding care/treatment of a P lacking capacity has to take into account any statement of wishes and preferences. Therefore has legal status Patient needs to take into any health encounter.

5. Preferred Priorities for Care 2 new proxies – Lasting Powers of Attorney (P appoints, decides on P’s behalf) – Court appointed Deputies (appointed and makes decisions on P’s behalf) 1 advocate – Independent Mental Capacity Advocates (advocate, don’t make decisions) Refusal of treatment www.ncpc.org.uk

6. Who is it good for? Absolutely anyone! Life limiting illness Doesn’t have to be cancer. Allows patients to have input into planning their own future.

7. Preferred Priorities for Care Planning and being in control is important for some patients. Limitation should not be placed on them due to diagnosis, age, gender, sexual orientation, race or beliefs.

8. Where does this all fit with GSF/LCP? LCP GSF- 6/12 PPoC-Never to early

9. Where does this all fit with the GSF/LCP? Routine review – Possibly patient initiated Anticipated decline – Patient or professional initiated

10. Where does this all fit with the GSF/LCP? There is no specific time appropriate for everyone. Sooner the better-even at diagnosis! – More gentle conversation – More likely patient will be able to fill in – More time for patient to think and discuss with family/friends – Easier to plan logistics with family, friends, GP, social care professionals, specialists etc. – Have to be prepared to alter and adjust plans over time.

11. Who completes the documentation? Patient held document Ideally patient Could be a relative with patients input Could be professional with patient Potentially an individual with LPA could fill in for a patient.

12. Pros and Cons Real potential to improve patients experience Provides idea of patients wishes Personally responsive health system May provoke discussion and conversations Allows better planning of services Allows patients freedom to change their mind, but still have their views listened to.

13. Pros and Cons May spark difficult conversations within families Patients written views may end up being a product of coercion by others-”you don’t want that, think of mums health!” Potential for patients stated wishes to “trap” other family members into caring role-”what ever happens I want to stay at home” “my wife will look after me” “I certainly don’t want any carers” Patients may feel aggrieved if their preferred priorities of care are not met, -raised expectations. Implementation and delivery costs include leaflets, paperwork, and the time of a highly trained professional, who could be utilized elsewhere. May require sizable service re distribution towards primary or tertiary care. May require money currently going to secondary/tertiary care to be redistributed to social care.

14. Local Experiences Meetings for last year – ASSD – Specialist Palliative Medicine – GSF Facilitators – GSF in Care Home Facilitator – GP Facilitator – Community Specialist Palliative Care Teams – District Nurses – LCP Lead Nurse

15. Local Experiences Workshop for professionals involved in implementing the PPoC Pilot. – DN’s – SW’s – LCP Lead Nurse – GP Facilitator – CSPCN – GSF in Care Homes Facilitator – GSF Facilitators – Care Home Managers Review of documentation, experience of completing the document, look at potential pitfalls of the document, and support.

16. Local Experiences Implementation for pilot differs slightly. Initiated by professional Supported with leaflet Completed either then and their or on a later visit Completed by the professional and the patient. Form left with patient Form may not be initiated if – Patient too ill to engage with the process – Patient confused, agitated or unable to communicate for other reasons – Inappropriate time in the illness (focussing on living, in denial, refusing or overwhelmed with bad news) – Contact time with patient too short to initiate the document appropriately – Insufficient staff time – Other (please state) Log documents are completed. Fax sent to all appropriate professionals informing them that the document has been initiated.

17. Local Experiences Pilot project commenced 1 st April 2008! Four GP Surgeries – Mile End – Fakenham – Blofield – Attleborough Two care homes – Sutherlands (Wymondham) – The Old Vicarage (Ludham) In-Patient unit PBL Rowan Day Centre PBL NNUH wards

18. Local Experiences-Pilot Documentation Locally written Adapted PPoC Document Patient Leaflet Idiots guide Checklist Log documents Fax forms

19. Local Experiences Ongoing pilot Due to cease October 2008 Should have conclusions by early 2009 – Looking particularly at deaths in Preferred Place of Care, and how preferred place of care may change over the disease trajectory. Plan to roll out across Central Norfolk in 2009

20. Preferred Priorities for Care What is the PPoC? – Patients making their wishes known What patient groups should we be using it with? – Anyone with a life limiting illness, at least initially! Where does it fit with GSF/LCP etc? – Start as early as appropriate, feeds into GSF meetings Who completes the documentation? – Ideally patient, or professional and patient Are there any downsides? – Of course! Local ACP/PPoC Documentation and pilot. – Started April 2008, due to report early 2009 – May lead to wider roll out across Central Norfolk.