North West London residents tell us what is important to them about community-based specialist palliative care for adults (CSPC)
The North West London Integrated Care System has published the final 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.
Since the interim engagement outcome report was published in June 2022, we have continued our programme of engagement with residents, representatives and stakeholders. We continue to receive feedback and contributions from people right across NW London and would like to thank them again for taking the time to contribute and share their experiences of the care they and their loved ones have received.
We have published further case studies, interviews and meeting notes and they are included in the final Engagement Outcome report and have also been published on the review webpage.
It is important to say that engagement will continue as we look to gain more understanding from different communities and this will again will continue to feed into the programme.
View the final Engagement Outcome Report - published March 2023
View the Summary Engagement Outcome Report - published March 2023
View the Interim Engagement Outcome Report - published June 2022
View the Issues Paper - published - November 2021
In terms of next steps, the CSPC Model of Care Working Group consisting of patient representatives and other palliative and end of life care stakeholders across the system has been meeting regularly and the minutes of its meetings are now available online. The insights obtained through our engagement has fed in directly to this work and is influencing outcomes.
The Working Group has agreed that as part of the new model of care there needs to be a core and common service offering across all community-based specialist palliative care provision in NW London to make sure all our residents have access to a consistent level of high quality care, reducing inequality and unwanted variation.
In addition to the core service offering, individual boroughs will be able to develop services further or additionally in order to meet local needs, and better safeguard against service inequity for our diverse communities.
We will retain the current hospice inpatient bedded service capacity and the resource needed to deliver it. This will make sure we are able to respond to fluctuations in demand and meet the projected increase in need.
Through this work we aim to make sure community-based specialist palliative care services have the flexibility to increase service provision against the projected growth in need of our population for the next five years and beyond.
We will develop sustainable services that recognise current and projected service demand and take into account our current workforce and the limited availability of specialist palliative care professionals including palliative care consultants.
We will continue to focus on collaboratively developing our existing services and reaching out to communities and groups who are not currently using community-based specialist palliative care services to better understand barriers and needs
We need to make sure we use the budget allocated to community-based specialist palliative care as efficiently as possible so that we are providing the maximum amount of high quality care services that we can. This will include investing in the other community-based specialist palliative care core services (not just hospice inpatient care) including:
- Different types of bedded care such as enhanced end of life care beds in care homes
- Community-based specialist palliative care (SPC) team
- 24/7 specialist palliative care advice
- Hospice outpatient clinics and wellbeing services
- Psychological support
- Bereavement support
- Lymphoedema services
We need to develop bedded care that allows us to care and support patients with a range of specialist palliative and end of life care needs. This could be in a number of locations including a hospice inpatient unit, a care home or a patient’s own home with community specialist palliative care team and other community services support.
We will also be working closely with our providers to support them to have access to an extensive range of support services such as IT infrastructure or a workforce with the right knowledge and skills that is able to deliver high quality compassionate care.
It is expected that the Model of Care Working Group will complete its work by Spring 2023. Once complete we will move into a transparent and robust appraisal process that will allow us to decide between different options and to develop a preferred way forward that addresses all of the issues, as laid in the Issues Paper that was published in November 2021.
You can find further information on our website at www.nwlondonics.nhs.uk/cspc
If you have any questions or would like to discuss the report with us, please email: firstname.lastname@example.org