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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

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
findings
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
slide5
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
findings1
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
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

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’
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
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,

www.endoflifecareforall.com

  • 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

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

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)
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

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

slide24
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’

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