National and regional update

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

3. 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

4. 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

5. 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

6. 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

7. 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’

8. 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

9. ‘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

10. 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

11. Yorkshire & Humber region

12. 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

13. 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

14. 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

15. 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

17. 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

18. 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 • 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. • Introduction to bereavement and the grieving process - breaking bad news, models of grief, how to recognise ‘complicated’ grieving, appropriate sign-posting to other services

19. Other info & resources

20. 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

22. Dying Matters www.dyingmatters.org • Dying Matters Awareness Week 2011, 16th to 22nd May 2011 • National event 17th 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)

23. 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

24. 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’

28. Penny.kirk@ycn.nhs.uk