Building on feedback from previous engagement

Detail on the Palliative care services improvement programme in the London Boroughs of Brent, Hammersmith & Fulham, Kensington and Chelsea and Westminster. Note this review has been superseded by the current NW London wide process and as such the outcomes will feed in to that process but the options are not recommendations that we are actively progressing

In November 2018 Central London CCG, on behalf of West London CCG and Hammersmith & Fulham CCG, commissioned Penny Hansford, former Director of Nursing at St Christopher’s Hospice, South East London; to independently review provision of community-based specialist palliative care services in the three boroughs following suspension of the in-patient unit at The Pembridge Hospice following that failure to recruit a consultant registered on the specialist register for palliative care which is required to cover inpatient care.

This event, combined with commissioner’s desire to ensure palliative care services are fit for the future, meant the tri-borough CCGs decided to review the current provision of specialist palliative care. The independent review of palliative care services published with the aim of developing recommendations for an improved commissioning model that would deliver high quality services for patients, families and carers across the three boroughs.

A ‘Call for Evidence’ was launched on 14 December 2018 and a clinical steering group was created, with representatives from GPs, acute trusts, community trusts and hospice providers, all with an interest in specialist palliative care, with the final review published in June 2019.

The report provided a comprehensive assessment of the current local service provision, a review of best practice and made a number of recommendations for commissioners to consider for the future model of service.

Findings and future options

The review of services offered to patients identified the following three overarching challenges to be addressed:

  • inequity of specialist palliative care services in the three boroughs
  • inequity of access to the services, with only 48% of people who have an expected death having any contact with community palliative care services; and
  • inequity of funding arrangements for the services from the CCGs.

The review put forwards three options in order to address these challenges whilst providing a sustainable local system, which ensures all patients receive care in their preferred place at the right time:

Option one (recommended option)

Tender a new community service with one lead provider for the specialist palliative care services, to provide an 8am-8pm co-ordination/case management centre. Out-patient, rehabilitation and well-being services should be easily accessible to patients and be located within the boroughs

Option two

Tender a new service and rationalise and reduce the number of specialist providers to two, with the same service specification and contracts and

Option three

Tender the services based on one community service per borough with the same service specification with one co-ordination centre/case management centre per borough.

Read the review in full here.

In Autumn 2019, the three CCGs were joined by Brent CCG as a commissioner of services at the Pembridge Hospice in holding a number of workshops to understand the experience of the end to end pathway.

Workshops were on held on ‘Access’, ‘Care’ and ‘Bereavement / aftercare’ with the purpose of having some in-depth conversations on the whole end to end pathway and use the information to feed into future potential scenarios for service delivery.

After listening to feedback from the public and stakeholders following the public workshops, we launched our ‘potential scenarios’ to the public for discussion and feedback and work in partnership with the public to design future potential options for service delivery.

This led to the development of four scenarios that set out how we might organise palliative care services in the future and in February 2020 we asked the public for their feedback on them.

Scenario 1—Services remain the same.

This scenario would keep all palliative care services as they are including the re-opening of the inpatient unit at the Pembridge, subject to the appointment of a palliative care consultant. In-patient, day and community care services would continue as they are.

Scenario 2- Some improvements to day and community services with in-patient services remaining the same.

This scenario would keep in-patient services as they are now, including the re-opening of the inpatient unit at the Pembridge subject to the appointment of a palliative care consultant.

Community services would also be standardised to 5 days’ week. This scenario would also lead to some improvements in the co-ordination of out of hours’ advice.

Scenario 3—A re-design of all elements of palliative care services.

This scenario would see in-patient services delivered from four rather than five sites but without reducing the number of beds that the NHS funds.

This would enable CCGs to fund enhanced community services 7 days a week, with 24/7 admissions for patients. It would also provide an out of-hours nurse visiting service and Hospice@Home available to all.

Scenario 4—A re-design of all elements of palliative care services including access to a new nurse-led inpatient service.

This scenario would see in-patient services delivered from four rather than five hospices but without reducing the number of beds that the NHS funds. CCGs would then fund enhanced community services.

Patients who do not have complex medical needs, but whose preference is to die in a hospice environment could receive nurse-led care at a bed in North Kensington provided by the Pembridge Palliative Care.

There followed a period of further engagement on the options with the public and a wide range of stakeholders which brought forward a number of themes and feedback on the scenarios.

  • Dying in dignity and agreement on the importance of palliative care and local services
  • Communication and awareness of death and dying, palliative care and the need to plan for it
  • Capacity of service provision now and in the future
  • Review process – residents wanted more information on the evidence being used to inform the process
  • A strong desire to keep inpatient services at Pembridge and opposition to closure
  • Agreement on the need to improve access to services
  • Better and more clear engagement
  • More information on the staffing issues
  • More information on the finance issues
  • To consider the impact of travel and transport when making decisions
  • Recognition that there was a need for change

In summary we heard throughout the engagement period, that specialist palliative and end of life care services play a crucial role for people. The feedback confirmed that people really value their local specialist services and people with experience of these services are very positive about the care they have received.

We also heard that we could improve and that these services could be available to more people, be more inclusive, adaptable and offer more choice. The feed-back indicates however that there are differing views about how we make these improvements, and create a more equitable service for all.

View the full public engagement report

The decision was then taken to pause the programme of work due to the current coronavirus outbreak and the subsequent decision by the NW London ICS to look at community-based specialist palliative care services across the eight boroughs in NW London.

Hillingdon Clinical Commissioning Group (HCCG) has performed a review of this service, this report reflects the views of general practitioners (GPs) and the lesbian, gay, bisexual, and transgender community (LGBT). Knowing the points of view of GPs is important in order to understand, what works well and what areas of the service require improvements to provide better support to professionals, patients and family members.

In relation to the LGBT community, HCCG engaged with patients and public to understand barriers and experiences in relation to access across Primary and Secondary Care service.

Following the findings above, some recommendations could be taken

1. Monthly visits to palliative care team surgeries.
General Practitioners are aware that this team is a specialist in the treatment of these patients and their support in Surgeries would help GPs not to be overwhelmed with the workload and would also be vital in relation to receiving advice on how to address these patients and their relatives.

2. Clear structure of End of Life Service (Pathway)
GPs believe that it is crucial to have a clear pathway to know who is the right person to contact, having a flow chart available for Surgeries would be beneficial for patients, family and professionals, so everyone would know who and what type of responsibility has each part involved.

3. Improve communications between the parties involved especially between the Hospital and Primary Care
Patients and their families arrive at surgeries and ask GPs about things they cannot answer. The hospital is not always clear enough at hospital discharge and this is a problem for GPs. Family members and patients do not understand the information received from the Hospital or have information gaps that do not know where to cover Improving communication between the parts involved would help improve the quality of the service offered.

4. More training for GPs would be beneficial
Most GPs agree that attending courses would help them feel more secure when dealing with these types of patients and family members. Examples mentioned by them were:

  • How to have difficult conversations with patients and family
  • How to cover the CMC efficiently and quickly
  • Refresh knowledge about EOL - Masterclass


5. More District Nurses
GPs believe that Palliative Care Team does an incredible job but they are not enough more district nurses will help to improve the service.

6. Create a Pharmacist Team for EOL
Having this team in the same way as Palliative Care would be very beneficial for GPs, since they could receive advice on what type of medicines patients should have. Some GPs don’t feel confident about prescribing these medicines.

See the Review carried out on End of Life Services in Hillingdon in January 2020.

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