National and regional update
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National and regional update. Penny Kirk End of Life Care Programme Manager Yorkshire Cancer Network. DH Bereavement Working Group. DH Lead identified for bereavement Commissioned literature review: Current service levels across England

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National and regional update

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National and regional update

National and regional update

Penny Kirk

End of Life Care Programme Manager

Yorkshire Cancer Network

Dh bereavement working group

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



  • 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

National and regional update

  • 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



  • 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

What in your view would improve the bereavement journey after a death in hospital

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


  • ‘Continuity is important - inconsistencies arise with handovers and

    staff changes right through the process from nursing care to funeral


  • ‘You need the right system and the right humans running it’

  • ‘Children are excluded - nobody asks about children’

Menu of solutions

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

At and after service

‘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

Next steps for development

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

Yorkshire humber region

Yorkshire & Humber region

Bereavement workshop

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

  • Bereavement service specification

    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

    Draft quality markers

    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

    End of life information pathway

    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

    National e learning

    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,

    • 1 module currently on bereavement assessment

    • 6 further modules planned for release next March, focused on bereavement care and support

    Bereavement modules tbc

    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

  • Other info resources

    Other info & resources

    Tell us once

    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

    Dying matters

    Dying Matters

    • 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)

  • Bereavement services association

    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



    • National network for those who work in bereavement services

    • National forum for discussion & training for those providing bereavement support services

    National and regional update

    • National End of Life Care Programme

      • 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


      ‘World’s first magazine to celebrate life and death’

    National and regional update

    [email protected]

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