The Leeds project

Rachel Nixon, Leeds Project Manager

With an ethnically mixed population of 780,000 and a dynamic urban environment, the Leeds project represented an exciting new challenge for the Marie Curie Delivering Choice Programme.

Local service providers in Leeds are committed to improving palliative care and this is reflected in their enthusiasm in being a part of the programme.

The Leeds project is now well into Phase III, with a range of service improvement pilots underway. Among these are a number of 'firsts' for the programme - pilots that had not previously been tested in other sites. These include: promoting palliative care in care homes, and improving access to palliative care for ethnic minority communities.

There are a total of eight workstreams underway. Scroll down to read more.

Palliative care in care homes

For many residents of care homes, this is the place where they would like to be cared for at the end of their lives.

Two dedicated facilitators have been appointed to support care home staff across Leeds in caring for residents at the end of life.

The work of the facilitators includes:

• Working with existing palliative care facilitators to build upon and develop good practice
• Improving quality of care for residents of care homes who are nearing the end of their lives
• Providing palliative care training and education for care home staff

Improving access to palliative care for ethnic minority communities

Leeds is an ethnically diverse community, yet there are a number of barriers preventing full access to palliative care services for ethnic minority groups. These include communication and language barriers, as well as a need for better understanding among those working in palliative care of religious and cultural beliefs.

Some ethnic minority groups are also not aware of the palliative care services available to them in their community, or if they are aware, they may find them difficult to access.

To address this, a dedicated ethnic minority link worker will work across partner organisations to:

• Develop links with the different ethnic minority groups across Leeds in order to understand their needs for palliative care
• Improve access to palliative care for these groups
• Explore staff training needs in promoting awareness for cultural and spiritual issues and enhancing communication
• Help streamline communication between groups and service providers

Dr Fiona Hicks, Consultant in Palliative Medicine, speaks at the Leeds project's educational forum at the Thackeray Medical Museum in July 2007 about the importance of patient choice in place of care.

Support for patients and carers

The appointment of a palliative care coordinator for patients and carers will help to extend and build upon the excellent support services already underway in Leeds for palliative patients and their carers.

The coordinator will:

• Explore existing support services and review capacity, identify gaps and consult with users about what support they need
• Work closely with local providers to develop a strategy for the provision of support for patients and carers across all communities in Leeds

Promoting timely and coordinated discharge

There are a number of factors leading to delays in discharging palliative patients from healthcare institutions, which can mean they spend their final days in a hospital or hospice when their wish is to die at home.

The Leeds project is piloting two service improvement initiatives to help address this. These are as follows:

Dedicated facilitator

A Palliative Care Discharge Facilitator (who is also a Registered Nurse) has been appointed to identify patients in hospitals/hospices who are nearing the end of their lives and want to return home. Working closely with staff, part of their role is to challenge barriers which may be preventing them from achieving their wish.

'Meet and Greet' scheme

Called 'Meet and Greet', a supported discharge initiative is being put in place as an extension of the existing Marie Curie Nursing Service. A team of Marie Curie Nurses and Healthcare Assistants will provide care for vulnerable patients in their homes up to 24 hours after they have been discharged.

This scheme is predicted to make a big difference to patients who live alone, and will make a big difference to carers who need support during this early stage.

Flexible and responsive community teams

Bringing social and healthcare together and providing continuity of care for patients in the community is at the core of this initiative.

Feedback from patients, carers and professionals in the project's early stages illustrated a need for more responsiveness and flexibility in the way palliative care is provided - particularly for patients in the last few days of life.

A team of generic care workers is being set up to provide both health and social care to patients nearing the end of life. Their priority will be to provide patients with high quality care in a flexible and responsive way.

Dedicated ambulance

The programme is piloting a new palliative care ambulance which provides a dedicated and flexible transport service for patients with terminal illnesses.

Operated by the Yorkshire Ambulance Service, the ambulance aims to respond quickly to requests and is primarily there to take patients who are being discharged from hospital or hospice to another place of care (such as their home or care home). It is also available for the urgent transfer of patients to palliative care treatment.

The ambulance is staffed by a crew of two trained ambulance care attendants, who can deal with the specific care needs of palliative patients. It is designed to help patients feel as comfortable and relaxed as possible on their journey with a different decor to a regular ambulance, including a special colour scheme and reclining chair.

Palliative Care Register

A common theme highlighted by many providers of palliative care is that patients with palliative care needs are still not well identified or, if they are, this information can be easily lost in handover. The Leeds project has proposed the development of a Palliative Care Register, which will capture the essential information required by clinicians to identify this group of patients and support decision-making.

A dedicated systems integration analyst has been appointed to take this forward by:

• Undertaking a review of existing, similar systems, and establishing how the Palliative Care Register should be set up
• Working with a local steering group to develop an option appraisal for the new register

Education and development for staff

Across Leeds there is a variety of ongoing training and education in palliative care available for staff - but more is required.

The project has appointed a palliative care training and development facilitator, and an administrator to provide support. Together they will:

• Develop and facilitate the delivery of a training programme which was direct impact on improving the experience of patients and carers
• Promote existing opportunities for education in palliative care and support the development of a dedicated palliative care website for Leeds