North West London residents tell us what is important to them about community-based specialist palliative care for adults

9 June 2022

The North West London Integrated Care System has published an interim engagement outcome report that contains all the feedback given following discussions with local residents and those who have first-hand experience of palliative and end of life care received in NW London. 

Our ambition is to improve community-based specialist palliative care and support for adults, families and carers in NW London.  The only way we are going to succeed is if we work closely with local residents, families and carers to develop services that truly meet their needs.

View the Issues Paper

View the Interim Engagement Outcome Report

View the key findings

We have received a tremendous amount of feedback and we would like to thank everyone who has taken the time to contribute and share the good and bad experiences of care they and their loved ones received.  These stories are deeply personal, but we found that participants wanted to share them because they are passionate about improving the care and support that people receive in NW London.  We have been humbled by this.

Robyn Doran, Borough Director for Brent Integrated Care Partnership who is leading on the review for the North West London Integrated Care System, said: “We would like to thank everyone who has taken the time to read through the Issues Paper and for attending one of our events, completing the survey or giving us feedback by other means. The feedback received has been both personal and will provide valuable insights on how we get end of life and palliative care services right for all residents.”

During the involvement period, we arranged a number of events and webinars, attended external meetings and arranged numerous one on one interviews with local residents and representatives of the voluntary, community and faith sectors.  We also linked in with experts both locally and nationally in certain areas including learning disabilities and homelessness.

We received a large amount of feedback which we are responding to and some actions have already been addressed as a result. There are also areas we are currently developing and implementing, or propose to do so, in order to address the issues raised. Some local residents have been kind enough to share their stories so we could use them as case studies to illustrate the good experiences and the challenges that people face when using community-based specialist palliative care services, so that we can learn from their experiences.

In addition to these meetings, we developed a number of online surveys through which local residents and health and social care professionals could give their views. Open-ended questions were also included to give respondents the opportunity to express their opinions in their own words.  We also received a number of written submissions which were responded to. 

It is our expectation that engagement with local residents will continue as we move forward.  All boroughs have had the opportunity to be involved in a webinar or complete a survey. 

Further webinars are already planned or being planned for Brent, Kensington & Chelsea and Westminster. The output of the webinars will be used to support the final report and new model of care working group.

Dr Lyndsey Williams, NW London GP Clinical Lead for End of Life and Care Homes, said: “It is widely recognised that when caring for someone in the last year of their life, we have only one chance to get it right. I encourage local people across North West London to join these events and tell us what is important to them as we look to develop a community-based specialist palliative care service that delivers high quality care and excellent patient experience for all. We can’t do this without you and we need your support and input.”

“We have seen what a difference specialist palliative care services can make to a patient and their families and carers as they come to the end of their life but unfortunately we have seen what can happen if the care and support is not there and the damaging legacy for those left behind. That is why it's so important that we work together to develop services that are clinically to a high standard but also meet what patients and family’s need."

All the public feedback received will be used by our model of care working group, which will be responsible for designing, planning and mobilising the future model of care for adult community-based specialist palliative care. 

Membership of this group will consist of local residents, clinicians and other palliative and end of life care stakeholders. The group will be asked to:

  • agree a common specification / common core offer for community-based specialist palliative care
  • develop a new model of care to deliver the specification / common core offer
  • map out how this can be implemented in each borough.

The work will draw on the national service specification for adult palliative and end of life care, the previous NWL palliative care review programme work and qualitative and quantitative feedback from residents and healthcare professionals obtained through our engagement. We will also utilise activity trend data obtained through the programme’s data working group and undertake further work looking at the structure of our services workforce.

The expected output is a set of core service standards, requirements and service functions that will need to be delivered across NW London. There will also be a number of additional localised requirements that the local Borough Based Partnerships will have responsibility for implementing these in view of their local context and population needs.

We will work with the Integrated Care Partnerships, local residents and stakeholders to decide whether the new service standards can be delivered by existing service structures or whether a service change is needed.  If substantial service change is needed, we will then need to consider if a public consultation is needed.

We understand and share local residents’ feedback that having good community-based specialist palliative care services is really important. In some cases, the feedback that has been provided has led us to make changes to services where possible and have plans to do some more of this via this review programme.  This is detailed in an insight report where we also detail areas where we are not able to make changes.

We would like to reiterate our commitment to work collaboratively with our public, patients, clinicians and other system partners as we move forward to develop the future model of community-based specialist palliative care for adults, which includes consideration of current services and where the locations we need our services in

Please note this is an interim engagement outcome report as our engagement is an ongoing process and we expect to receive further feedback and learning that will influence the review programme as we move forward.

If you have any questions or would like to discuss the report with us, please email:

Accessibility tools

Return to header