End of Life Conversation

Closed 30 Jan 2019

Opened 29 Jan 2019

Feedback Updated 4 Mar 2019

We Asked

Overall aim of the engagement

The aim of the engagement was to learn from experiences of family carers what works well, what needs improvement, what is missing and what suggestions people might have to improve our local palliative care offer.

What we were asking

  • What support did you use and how useful was it for you & person you cared for?
          Prompt: support can be professionals, services, information such as leaflets etc.
  • What did you find challenging / gave you extra stress?
    Prompt: can be transport, I.T, lack of information, communication ect
  • What did you miss / what didn’t work well / what can we do better?
  • Were your needs assessed / what are your needs at the moment and what support do you receive / need?

 

You Said

What participants said

Strengths:

  • End of life team at home
  • End of Life assessment
  • Enhanced care team highly valued but only in last 2 weeks of life
  • Advanced care planning works especially well for dementia patients but not necessarily for other conditions

Weaknesses

  • Not a person-centred care plan, no choice provided
  • Not possible to book respite care
  • Variable support from GPs: some very supportive GPs and some carers reported not having received much support from their GP
  • Lack of conversations to discuss and plan end of life care
  • No bereavement support offered
  • Lack of training for staff; staff don’t know when / how to start conversations and what services are available
  • Treatment for pain was lacking

Challenges

  • Adapting home gave stress and had an impact financially; home environment felt less homely
  • Need to start conversations earlier
  • Skills of family carers not appreciated by care home staff when cared for moves into care home
  • Support for deaf people in end phase of life was lacking

Barriers

  • Disjointed services
  • Lack of training for family carers

We Did

What we did or will do as a result (ie how this will influence decision-making)

The feedback from the participants confirmed that the new model needs to have:

  • A single contact point for patients and family
  • More opportunities for respite for the carer
  • Right balance between peer support for carers based on condition and more generic; to create more opportunities to meet others in a similar situation for carers looking after someone with a less common condition
  • Clearer signposting on bereavement support offer
  • Continuity in contact with carers by services in days after person passed away to avoid abrupt ending of support on day person passed away

Based on the feedback we have now

  • Made a split between the palliative care and bereavement pathway to acknowledge the different needs
  • reviewed respite opportunities and are looking in creating more options for respite
  • looked at continuity in support for carers in first days after death
  • improved joint working between elements of the pathway
  • extended enhanced support team involvement
  • looked at training opportunities to upskills staff e.g. home care staff

Overview

Background on the issues being explored

As part of a wider piece of work to review and redesign the palliative care provision in Stockport, the CCG and FT worked together with Healthwatch to organise a focus group to:

  • understand the experiences of informal carers in looking after someone at the end stage of their life
  • inform the direction of the local implementation plan for palliative care in Stockport.

Why We Are Consulting

Overall aim of the engagement

The aim of the engagement was to learn from experiences of family carers what works well, what needs improvement, what is missing and what suggestions people might have to improve our local palliative care offer.

What Happens Next

Next steps for involvement for the group

The participants have been promised to meet up with commissioner and palliative care lead in 9 months’ time to keep informed on progress of this redesign work and to further engage on specific elements of the new model to ensure we have got it right in the new model.

Areas

  • All Areas

Audiences

  • Carers

Interests

  • End of Life