Buckinghamshire, Oxfordshire and West Berkshire (BOB) ICB

BOB ICB’s approach to palliative and end of life care is to improve access and experience of these services to enable people of all ages to die well. It has taken a number of actions to commission palliative and end of life care for children and young people effectively.

Strategy

The ICB has added a separate ‘Dying Well’ priority to its strategy. It has prioritised the following in its joint forward plan:

• Goal 1: A robust model of access to 24/7 Palliative and End of Life services for patients, their carers and relatives.
• Goal 2: A successful population health approach to early identify people needing palliative and end of life services
• Goal 3: To co-design PEoLC through provider collaboratives and in partnership with people with lived experience.

The joint forward plan and the ICB’s overall strategy both specifically reference children and young people’s palliative and end of life care. Its palliative and end of life care programme has been all-age from its inception and has been codesigned with patients and the public.

Working with providers

The ICB has:

• funded extensive work by external experts to map services
• worked to join acute sector and community providers to try to improve the process of discharging children and young people with medical complexity and who are technology dependent into the community in a programme known as the Homeward Bound Hub; this may lead to a wider pilot of a virtual ward model
• funded the medication budget of third sector hospices, which was previously sustained from on charitable sources
• begun moving providers onto long-term contracts, rather than funding them using grants, to make sure they are sustainable and engaged in the local health and care system.

Securing specialist medical services

The ICB has:

• supported work to appoint a consultant paediatrician with a special interest in paediatric palliative and end of life care in Berkshire with work underway to secure a second for Buckinghamshire
• pump primed a second specialist, GRID-trained paediatric palliative and end of life care consultant post for the region for two years, with a future funding contribution from the regional tertiary centre (Oxford University Hospital NHS Foundation Trust) negotiated
• funded one session per week for three years to improve transition to adult services in palliative and end of life care patients
• created a children and young people’s clinical lead post to work alongside the all-ages clinical lead for palliative and end of life care in the ICB footprint; this is funded at half a session per week for more than three years.

As a result of the above actions, children and young people’s palliative and end of life care in now embedded in the tertiary centre.

Other steps

The ICB:

• has funded a network coordinator for the managed clinical network on a fixed term basis
• is supporting work to implement shared care records and advance care planning through Graphnet and connected care
• made sure that all-age workforce training has enabled adults to learn from children and young people’s providers about managing patients with learning difficulties – and ensuring that children’s and young people’s services acknowledge frailty as an ‘all-age concept’
• is well engaged with the NHS South East palliative and end of life care strategic clinical network.

The ICB was recognised as a finalist in the 2023 HSJ awards for its all-ages approach to palliative and end of life care.