Wendy Lewis-Cordwell Macmillan Network Bereavement Lead 15 th November 2012

1. Bereavement Care in Cumbria and LancashirePalliative Link Nurse Study Day‘Crooklands Hotel’, Kendal, LA7 7NW Wendy Lewis-Cordwell Macmillan Network Bereavement Lead 15th November 2012

2. What is the project? To encourage the development of and equitable and high quality bereavement service across the whole of Lancashire & South Cumbria Network area building on existing good practice and national guidance

3. NW End of Life Care Model Last days First days Advancing disease Increasing decline Bereavement DEATH 1 year 6 months 1 year Grief / Bereavement can begin at the diagnosis of any life-limiting disease

4. Develop Bereavement Services in Cumbria and Lancashire • Map current level of services • Undertake a gap analysis of such provision • Identify improvements in services and environments • Introduce agreed minimum standards • Encourage collaborative working • Respond & Implement National Guidance • Develop Education/Training • Identify and share Best Practice • Be accessible to patients, families, carers, visitors, staff as the project demands

5. BEREAVEMENT CARE DEVELOPMENTCUMBRIA & LANCASHIRE Brampton Carlisle Wigton Anton Penrith Workington Keswick Whitehaven Brough Ambleside Windermere Ravenglass Kendal Sedbergh Kirkby Lonsdale Ulverston Carnforth Barrow - In - Furness Morecambe Lancaster Heysham Fleetwood Earby Garstang Clitheroe Blackpool Nelson Preston Burnley Kirkham Accrington Blackburn Bacup Leyland Darwen Chorley Ormskirk 20.054 deaths per annum – Cumbria & Lancs (Source: Office for National Statistics and Research Agency – 2010)

6. Suicide facts …Above National Average in Cumbria (data published by Demos 2011) 2009 England – 4,390 16.1 Suicides for every 100,000 males 4.08 Suicides for every 100,000 females One death by suicide every 2 hours Data Supplied by PCT’s & Coroner’s Central Lancashire 32.5 per annum Cumbria 52 per annum North Lancashire 38.7 annum Cancer patients………the risk of suicide increases by more than TEN times in the week after diagnosis.

7. Scope the area…….The Bereavement Services Directory

8. Scope the area…….5 Localities

9. Scope the area…….The Bereavement Services Directory

10. Network Specification for Bereavement Services in Hospitals Standards of bereavement care that should be in place, to support the development of an equitable, high quality coordinated service across all hospitals Gap Analysis sent to all five acute trusts for completion Key recommendations: Senior Managerial support Bereavement Office Ward Chaplaincy Service Mortuary Service Information Policy and Procedure Monitor and Measure the Service

11. When a person dies - October 2011Guidance for professionals on developing bereavement services There is some value in locating bereavement centres within a mortuary Salisbury NHS Foundation Trust Providing - One stop Hospital mortuary and bereavement services can also be available for advice to professionals Provide a quiet, dignified and respectful environment Information and advice given, improving the quality of the experience Reducing the overall amount of time taken in completing and issuing the relevant certificates

12. Principles of good practice • Privacy & Dignity • Time to mortuary • Communication • Work in Partnership - with families and with others e.g. coroners, religious representatives & voluntary organisations • Environment and Facilities • Staff Training and Development • Staff Support and supervision • Review and Audit

13. Who is involved when a person dies?

14. ‘For you in Your Loss’ Questionnaire Responses Staff on the ward have many challenges but they handle all with patience, skill and compassion The booklet helped me to focus. Guiding me in how to do the practicalities I was allowed to stay longer than other visitors. The ward staff were wonderful, I will never forget their kindness Maybe a simpler way of getting into the hospital at night Forget ‘confidentiality’ obsession and tell one’s loved one how ill their relative is Unexpected delay in being able to register the death, doctor not available to sign medical certificate cause of death – on night duty!

15. Network Specification for Bereavement Services in Hospitals Standards of bereavement care that should be in place, to support the development of an equitable, high quality coordinated service across all hospitals Gap Analysis sent to all five acute trusts for completion Key recommendations: Senior Managerial support Bereavement Office Ward Chaplaincy Service Mortuary Service Information Policy and Procedure Monitor and Measure the Service

16. Network Specification for Bereavement Services in Care Homes Every care home should embrace the principles of dignity and respect, when providing a bereavement service and include the following: Gap Analysis sent to all care homes for completion 5 Key recommendations: Policy and Procedures Care After Death Information and Support Quality of care after death, audit and review Training and Education

17. Small Changes …. Make a big difference......

18. ‘In Your Loss’ Folder Bereavement Folder to be given to all families / carers with the MCCD in Cumbria and Lancashire 50,0000 to be distributed to Hospitals, Hospices, GP’s, Care Homes, Registrars, etc Initial supply delivered Nov 2012 Feedback from organisations Dec 2012 Further supply February 2013 (Each organisation will receive two years supply) Organisations can insert their contact details plus any additional local information

19. ‘When Someone has Died’

20. ‘In Your Loss’ Folder - Distribution

21. Dignity, Respect, Sensitivity, Communication! Are we still leaving bereaved families without information about what to do next!!!

22. Cumbria and Lancashire Bereavement Forum • Inaugural meeting 10th August at Preston Business Centre • Role of the group: • Promote Consistency across all localities • Identify opportunities of integrated working • Learn from others and share best practice • Influence local and national development of bereavement across ALL sectors • Meet 4 times per year (meetings to be rotated across Cumbria and Lancashire) • Next meeting Friday 23rd November 2012at Eden Valley Hospice, Carlisle

23. National Issues………..

24. Liverpool Care Pathway: Norman Lamb Health Minister will listen to concerns – BBC News 01.11.2012 • IT IS "COMPLETELY WRONG" FOR TERMINALLY ILL PATIENTS TO BE PUT ON A "PATHWAY" TO DEATH WITHOUT RELATIVES BEING CONSULTED • Mr Lamb also defended the practice of paying hospitals for using the pathway • I want to hear where things have gone wrong. I want to ensure we address that absolutely, but a lot of good things have happened in recent years to improve the experience at the end of life.“ • ‘Where there have been problems, I would say that it has not been with the LCP but due to lack of communication • Conservative Peer Baroness Knight, is calling for an inquiry into suggestions the LCP has accelerated some people’s death, said she had heard of cases where people were deprived of water without consent

25. Views sought on strengthening NHS Constitution……………… Proposals to strengthen the NHS Constitution are set out for public consultation today, with the NHS, patients and public are all being asked to respond • Patients, their families and carers should be fully involved in all discussions and decisions about their care and treatment, including their end of life care • The closing date for comments is 28 January 2013 • Responses to the consultation will feed into a revised version of the NHS Constitution, which will be published by April 2013 • http://www.endoflifecareforadults.nhs.uk/news/all/views-sought-on-strengthening-nhs-constitution

26. New NHS Mandate – 13.11.2012 identifies EoLC as a priority area……... The first Mandate between the Government and the NHS Commissioning Board, setting out the ambitions for the health service for the next two years, has been published today The NHS will be measured, for the first time, by how well it achieves the things that really matter to people. • Preventing people from dying prematurely • Enhancing the quality of life for people with long-term conditions • Helping people to recover from episodes of ill health or following injury • Ensuring that people have a positive experience of care • Treating and caring for people in a safe environment and protecting them from avoidable harm http://www.dh.gov.uk/health/2012/11/nhs-mandate/

27. Death Certification Reform ….

28. People, Process & Technology in the Current System

29. Death Certification Reforms - Issues • April 2014 - new date for implementation of service instead of October 2013 • Transfer old payments to the new system and simply add burials • Will the public perceive this as imposing a ‘death tax’ • How will the LA’s cope with ‘non payment’- will bailiffs be used? • Pilots in hospitals, community, urban and rural area have been successful • Extend pilots on 2 sites - to include the sensitivities of neonatal and child deaths

30. Will the new reforms improve death statistics?

32. National Working Alliance For Bereavement • The Alliance brings together professional and volunteer organisations operating across all sections of the bereavement service workforce including: • NHS Bereavement officers • Medical Examiner officers • Mortuary and pathology staff • Hospital chaplains • Coroner officers • Hospice bereavement coordinators • Bereavement researchers • Bereavement volunteers • Experts in the field • The Alliance had been proposed to provide an overarching body for the relevant professional and volunteer organisations working with bereaved people in order to provide a shared view. • The Alliance will provide a collective voice to the Government, other professionals and to members of the public.

33. Gold Standard Bereavement Care Training for Professionals • Gold Standard Bereavement Care Training • Health and Social Care Professionals who come into contact with the bereaved • Roll out as a national programme • Build on the previously delivered • BSA ‘When a patient dies’ training • Cruse Bereavement Awareness and Support Training • Good practice benchmark • Initial pilot plus 5 additional pilots • Completed by March 2013

34. The Bereavement PathwayWebsite?

35. Care of the Dying is ‘URGENT CARE’

36. Dignity, Respect, Sensitivity • Treat the deceased with the dignity and respect – as you would have done when alive particularly when moving / handing them • Is there any specific information needed from the families / carers / others close to the patient i.e. religious practices? • Be aware of your own attitude, behaviour, and the words you use • Be aware that issues and incidents around death and dying impact the grieving process

37. REMEMBER: • When someone dies you only get ONE change to get it right. • Get it wrong and the family will remember what has gone wrong forever.

38. Any Questions Thank you……

39. Further information Please contact : Wendy Lewis-Cordwell Macmillan Network Bereavement Co-ordinator T: 01772 647 037/041 M: 07766137210 email: wendy.lewis-cordwell@lsccn.nhs.uk