Case study:

01 December 2011

Developing an end of life care lead role in adults' social work / social care services

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Key points

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What did you do?

The project manager worked with senior social care managers to identify end of life care leads in a range of community and hospital based teams.

The leads were asked to complete a checklist to identify their knowledge levels in relation to end of life care, training needs and preferred learning styles.

The checklists indicated a generally low level of knowledge regarding end of life care. Practitioners were unfamiliar with end of life care tools such as the Gold Standard Framework and the Liverpool Care Pathway and acknowledged a need to develop skills and confidence to communicate with service users about death and dying.

Please describe how you set up the service/practice. Who was involved? Please include details of user involvement
Training and development needs were addressed in a variety of ways:

• Training on “Challenging conversations” delivered by St. Christopher’s Hospice (a parallel demonstrator project)
• Facilitated learning network meetings for social care leads and district nurses with end of life lead role with guest speakers (topics included spiritual care, cultural and religious practices, how to improve joint working and challenges and barriers to providing good end of life care)
• Special interest lunches (topics included end of life care for people with dementia, assessment and care planning tools)
• Access to e learning resources
• Speed networking event with service users, local specialist palliative care services, voluntary organisations, funeral directors etc.
• Leads researched an end of life related issue of relevance to their specific role and presented their learning to team colleagues
• End of life care training sessions were provided for team members and senior managers by St. Christopher’s Hospice

Throughout the course of the project, leads met with the project manager to develop and refine the lead role in light of experience within their teams. The following final version was agreed:

Lambeth and Southwark: Social Care Lead in End of Life Care

Leads will:

• Have a working knowledge of the EoLC agenda & raise awareness
• Liaise and network with other leads (including Link Nurses)
• Educate –themselves and others and keep their team members informed of any key developments, sharing good practice
• Have a working knowledge of local resources/services
• Promote partnership working, to include service users and carers
• Influence practice by raising the social care perspective
• Test/check out good ideas with management
  Managers will:
• enable staff to fulfil all aspects of this role
• support the co-ordination of network meetings
• listen to staff feedback
• engage in EoLC issues at a strategic level

What are the resource implications of this? How has it been funded?

The project manager and the training input were funded by through moneys provided by the National End of Life care programme demonstrator project programme.

What have the challenges and solutions in setting up and maintaining the innovative practice?

It can be hard for leads to prioritise their end of life care responsibilities in addition to other duties.

• Keep the lead role definition simple and “doable” but allow for flexibility and ensure managers’ responsibilities are clearly stated. Ongoing senior management commitment and involvement is key to success
  Definition of “end of life care”. Not just about care in the final days of life.
• It is important to support all social care staff to reflect on their role in relation to all aspects of the end of life care pathway

Emotional impact of talking about death and dying

• If social care workers are to engage with end of life care they need the right supervision and support.
  Difficult for generalist social care staff to know what end of life care services are available locally and what they provide.
• Professionals and service users need up to date information about local service provision. Speed networking events are a highly effective way of informing staff, developing working relationships and motivating people

The leads found that some of the tools they use; assessment forms, IT systems, were not conducive to EoLC work and many have talked about not knowing where to record this information.

• The personalisation agenda provides an opportunity to review and amend forms / processes in order to facilitate EoLC discussions

Improving and sustaining joint working with healthcare partner. This was a particular challenge given the amount of organisational change locally.

• More work on multi-disciplinary team working is required. Through strengthening local networks the project helped to pinpoint key areas (care in the last few months) and lay the foundations for ongoing work at an operational and strategic level.

Outcomes (including how this was measured, evaluated and lessons learned):

Leads were asked to complete an evaluation form at the end of the pilot. They reported:

• increased levels of confidence in talking about death and dying, including discussions about end of life care in assessments and care planning
• knowledge of and confidence to contact specialist end of life care services
• increased knowledge and confidence in networking, gathering and sharing information

How has your evaluation demonstrated ways in which your project/service has affected the overall costs of health and/or social care for people who have used it?

The evaluation did not address service costs.

Plans for the future (eg sustainability):

For effective sustainability it is essential to have senior buy-in, clarity about aims and objectives, roles and responsibilities

At the final network meeting areas for ongoing work agreed with leads and managers included:

• leads meetings to continue
• Spread the end of life care lead model across more services
• Look at including the end of life care lead role within work load weighting process
• Address end of life care training in business planning
• Inclusion of a requirement for new domiciliary care providers to train their staff in end of life care.
• Amend assessment frameworks to include prompts for practitioners to consider EOLC care issues. For example, to ensure, where appropriate, that Support Plans for care providers highlight relevant end of life care plans.
• Continued work with health partners to explore how to maximise potential opportunities for partnership working – focus on care for service users who are at risk of dying in the next one or two months of life in line with local development of the AMBER care bundle (http://www.ambercarebundle.org/).

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