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

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 – 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• 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

•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

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…?

• ‘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

• 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• 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

• 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

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

• 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 MarkersService 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

• 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• 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 - TBC1. 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 others4. Children and Death

– grieving process for children, providing support to children and parents5. 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

OTHER INFO & RESOURCES

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

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

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

• National End of Life Care Programmewww.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.ukwww.youtube.com/rosettalive/playlists

• http://www.eulogymagazine.co.uk/‘World’s first magazine to celebrate life and death’

[email protected]