1. National and regional update Penny Kirk End of Life Care Programme Manager Yorkshire Cancer Network

3. Key NHS documents UK Standards in Bereavement Care (2001) When a Patient Dies (October 2005) – NHS bereavement services NICE Improving Supportive and Palliative Care for Adults with Cancer (March 2004) –3-component model of bereavement support End of Life Care Strategy (July 2008) –Further development needed, including staff training –Specific needs of those affected by sudden death e.g. suicide, accident –Specific needs of children and adolescents –Comprehensive information, widely available, range of formats/channels

4. DH Bereavement Working Group DH Lead identified for bereavement Commissioned literature review: –Current service levels across England –Existing good practice in England and comparative countries –Costs of service provision and potential cost savings by changing delivery models –Requirements for different population groups –Existing gaps in services, and suggestions for future service development

5. Findings Awaiting publication Key recommendations: –Death of the patient is acknowledged by appropriate members of staff in a way that is perceived as sincere –Early intervention (including, when possible, pre-bereavement support) is likely to prevent poor longer term outcomes –The recently bereaved should be provided with practical, self- contained information, clearly signposting them on to other services they may find helpful –Relevant training for front line staff to increase confidence in supporting the bereaved –Ensure greater transparency of services by auditing the provision, uptake and costs of bereavement care

6. To establish partnership working between NHS and voluntary bereavement services To ensure right information at the right time by the right people Establish clear pathways to facilitate equity of access & choice for those who seek support

7. Bereavement Pathways Project Joint project between CRUSE and Bereavement Services Association To establish partnership working between NHS and voluntary bereavement services To ensure right information at the right time by the right people Establish clear pathways to facilitate equity of access & choice for those who seek support Full report available at: www.crusebereavementcare.org.uk www.crusebereavementcare.org.uk

8. Findings Bereavement care well integrated in over 2/3 hospitals & most provide info about voluntary services 55% hospitals had a bereavement policy (26% in 2005) & 36% used a process to assess risk 38% of NHS services routinely provide follow up for bereaved (18% in 2001) Lack of understanding and joint working across sectors

9. What, in your view would improve the bereavement journey after a death in hospital…? ‘Bereavement offices are really for the hospital, not for the bereaved’ ‘Compassion should be on the job description’ ‘First professionals on the scene of a death must have compassion, empathy, training in helping bereaved people, tissues – the little things’ ‘Continuity is important - inconsistencies arise with handovers and staff changes right through the process from nursing care to funeral directors’ ‘You need the right system and the right humans running it’ ‘Children are excluded - nobody asks about children’

10. Menu of Solutions Provision of joint core literature Cross-sector working, including joint training, forums and referral pathways Improved assessment (difficult in acute setting) Improved follow up (from NHS) Joint service delivery e.g. onsite bereavement services

11. ‘At and After’ Service Early intervention 2 x 6 month pilots (Solihull) Contact within 2 weeks to offer support (all) Offered face to face support (low uptake) Weekly phone support for 8 weeks Trained volunteers 45% uptake, av. call length = 12 mins None of families then sought long term support, decrease in complaints

12. Next Steps for Development Pathway/timeline development (ongoing) Appropriate commissioning of bereavement services Need for universal standards, guidelines and quality measures Development of training Funding continued to 2013 Update UK Standards & When a Patient Dies Gold Standards Bereavement project – looking for volunteer sites

13. Yorkshire & Humber region

14. Bereavement Workshop July 2010 Good cross-section of attendees – voluntary sector, local authority, NHS Reviewed and adapted draft bereavement care pathway Separate pathways for expected and sudden deaths Not to over-medicalise bereavement What needs to be provided at each step – hard! Examine evidence base Gather and share examples of current working Identified need for training and wider awareness Has informed national development of e-learning modules Continuing links to national work on pathways

15. Bereavement Service Specification Due end of the year Framework for commissioners Support consistent approach to commissioning services Reduce duplication of work Will build on care pathway and quality markers work Include case studies

16. Draft Quality Markers Service Commissioners: Service specification for bereavement services Service Providers Designated suitable quiet spaces for families and carers to be seen post-bereavement to collect documentation and personal belongings (hospital, ?care homes) Information provision for the bereaved Effective pathways for the identification, provision of support, and appropriate onward referral of those at increased risk Systems in place to ensure effective, and appropriately tailored, education and training for staff around loss, grief and bereavement Systems in place to support staff in workplace, particularly in the event of a critical incident involving the death of a person or personal bereavement

17. End of Life Information Pathway Draft version Staff and carer involvement in development List of nationally available information resources for patients and carers Aim to agree minimum info to be offered to all Will include other resources available e.g. other formats, languages, specific conditions Final version will be available online

19. National e-learning e-ELCA for health and social care staff 130 modules covering 4 competency areas – assessment, communication, symptom management, advance care planning Case studies 12 modules available on public site, www.endoflifecareforall.com 1 module currently on bereavement assessment 6 further modules planned for release next March, focused on bereavement care and support

20. Bereavement Modules - TBC 1. Holistic Assessment of Carer/ family member needs -cultural & religious impacts, how the condition/cause of death may impact on the grieving process 2. Emotional support - sources of support, communication/counselling skills, language barriers, support for those with learning difficulties. 3. Practical support –death certification process, registration and the disposal of the body, financial help, notifying others 4.Children and Death –grieving process for children, providing support to children and parents 5. Talking about Death -cultural issues, taboo subject, developing skills in feeling comfortable talking about death. 6.Introduction to bereavement and the grieving process - breaking bad news, models of grief, how to recognise ‘complicated’ grieving, appropriate sign-posting to other services

21. OTHER INFO & RESOURCES

22. Tell us once Government programme led by DWP Working with LAs, HMRC, DVLA Only need to inform government once that someone has died Phased national roll out during 2010/11 – was on hold but now continuing Bradford

24. Dying Matters www.dyingmatters.org Dying Matters Awareness Week 2011, 16 th to 22 nd May 2011 National event 17 th May 2011 Set of leaflets/tools including: –How to help someone close to you who has been bereaved (#3) –What to do if someone you know has been bereaved (#4)

25. Bereavement Services Association Membership organisation for all those who provide bereavement support services (primarily NHS) Aims to: Contribute to the improvement of the quality of bereavement services Raise the profile and seek recognition from stakeholders of the role of those who provide bereavement support services Raise awareness of the role and availability of bereavement support services. Provides: National network for those who work in bereavement services National forum for discussion & training for those providing bereavement support services www.bsauk.org

26. National End of Life Care Programme www.endoflifecareforadults.nhs.uk –Publications, case studies VOICES survey (Views of Informal Carers – Evaluation of Services) – due to report March 2011 Map of Medicine – death and bereavement pathway Help the Hospices, CRUSE, Marie Curie, Age UK Visual resources www.wellbeingindying.org.uk www.youtube.com/rosettalive/playlists http://www.eulogymagazine.co.uk/ ‘World’s first magazine to celebrate life and death’

30. Penny.kirk@ycn.nhs.uk