END OF LIFE CARE LOCALITY REGISTERS WORKSHOP

1. END OF LIFE CARE LOCALITY REGISTERS WORKSHOP IMPLEMENTING AN END OF LIFE CARE REGISTER & ePCS IN SCOTLAND Peter McLoughlin, Programme Manager - Cancer, Diagnostics & Palliative Care

2. About NHS Lothian… • Population of just over 800,000 people • Single system organisation / 1 CEO (no Trusts, no WCC)! • Around 28,000 staff • Budget of circa £1.3bn • Provide care from 20 hospitals (3 main acute + RHSC), and over 300 Health / Medical Centres • Around 600 GP’s in 126 GP Practices • Tertiary Care: National for e.g. Liver Transplantation. Regional: e.g. Cancer, plastics, specialist cardiology

3. Number & Place of Death • Around 7,500 deaths PA • 57% occur in hospital (42% in 3 main acute sites, 15% in community hospitals) • 21% at home, • 14% in Care Homes, • 8% in Hospice. • By Trajectory…

4. Over time…more multi-morbidity, getting more complex, some with features from all trajectories… Response: Generalists (GP’s, Community staff, Hospital clinicians), + Specialist Palliative Care: 2 Hospices, Hospital Specialist Palliative Care Liaison Teams, Community Specialist Teams * 4, Palliative Care Pharmacists, + clinical protocols (DNAR, LCP, PC Guidelines, Pain etc)… + tools such as ePCS to support care planning & communication

5. Palliative Care Programme • Living & Dying Well – A National Action plan: National Clinical Lead / National Development Manager / National e-Health Lead / Advisory Group & Working Groups / Local Exec. Leads • Audit Scotland Review of Palliative Care in Scotland • Living & Dying Well in Lothian – our new strategy 2010 – 2015…including e-health - N3 connections for hospices - Better whole system activity reporting - Development of ePCS

6. Palliative Care Register: 3 QOF points each for confirming: Have a register in place Holding quarterly patient review meetings (min) Use now supported by an enhancement (DES) 1/ Placing patients on the register 2/ Care Plan completed within 2 weeks of registration 3/ Care summary shared with those involved in care OOH, within 2 weeks 4/ Assess when patient nears end of life using recognised pathway such as LCP Sliding scale fee (£0, £50, £85) per patient depending on coverage + £15 per patient for completion of item 4 83% of Lothian General Practices signed-up to the DES Palliative Care Register & ePCS in Lothian

7. The ePCS builds on the Gold Standards Framework Scotland project and the Emergency Care Summary (ECS). The ePCS will, with patient/carer consent, allow automatic twice daily updates of information from GP records to a central store, From the central store they will be available to Out of Hours (OOH) services – including IN CAR, NHS 24, Acute Receiving Units, Accident and Emergency Departments and shortly to the Scottish Ambulance Service. This will allow vital, structured information to be available in hours and OOH. Following a 7 month pilot period (Grampian, Lothian, Ayrshire & Arran) now rolling out in Lothian from 1 October 2009 electronic Palliative Care Summary ePCS – What is it?

8. ePCS – How does it work

9. What does it look like to practices?

12. Example ePCS screenshots (GPASS)

13. ECS Screen Shots ECS transfers minimum data – drugs & allergies. Presumed consent model.

15. What is transferred to OOH?

16. Benefitted from7 months of piloting – who to involve, data to collect, system design, ease of use etc – BIG BANG WON’T WORK – START WITH 1 OR 2 AND BUILD UP… Get the team right from the start – 1/ Someone interested with good clinical knowledge, 2/ Someone who knows how OOH works, 3/ Someone who knows how GP systems work Use your e-health clinical advisors / IT facilitators – and issue practical information to practices starting up… and information to patients… Local Implementation – Key Issues & Early lessons

19. Make e-health training support available to practices / users from the start Clinical leadership – at both practice level & system wide – championing use locally and listening / responding to feedback from the system. Consent – clear policy and approach (Ask for and record consent status in ePCS – to trigger transmission of summary – does not transfer until consent is given, and review date in place.) Once consent obtained & recorded in Gen Practice, don’t need to ask again in OOH setting. Evaluation plan –Develop as part of project – Service Evaluation should not require full ethics approval

20. Don’t need to put all information at once – regular update over time… allows time for more difficult conversations Education support material useful - NES – Developing a training video around approaching and undertaking difficult conversations – DNAR, PPOD etc. Style of use – some early reports of practices finding it useful to support practice meetings / MDT’s for palliative care. How do we best support this in training and further system development?

21. Bigger issues… Clearly need to map-out and use the IT platform / structure in your health system (GP systems – OOH systems etc). ECS was our basis – ePCS adds to this. Need support of central team – to prioritise in the national e-health programme / cut through bureaucracy / assist with decision making & leadership Ease of use – time / completion out of consulting room / visibility on the desktop / building up the story and keeping it up to date Not just cancer! How to inform NHS Boards of usefulness / effectiveness? NSS is monitoring activity for Lothian / Scottish Boards…

22. Contacts, Further Information & Resources: Information, including Patient Information Leaflets, and training materials: http://www.ecs.scot.nhs.uk/epcs.html National contacts: Dr Peter Kiehlmann, GP, Aberdeen and National Clinical Lead Palliative Care eHealth SGHD peter.kiehlmann@scotland.gsi.gov.uk Marysia Williamson ePCS Project Manager, NSS, Edinburgh Marysia.williamson@nhs.net Lothian implementation via: peter.mcloughlin@nhslothian.scot.nhs.uk Service Evaluation: Prof. Scott Murray, St Columba’s Hospice Professor of Palliative Care, University of Edinburgh scott.Murray@ed.ac.uk

23. Any Questions