Leading change

A Senior Learning Disability Nurse (SLDN) and Senior Nurse Specialist in Palliative Care addressed unwarranted variation in end of life care for people with learning disabilities in Hertfordshire through education of staff and adapting the end of life model used in care homes.

Where to look

Hertfordshire County Council Community Learning Disability Nursing (CLDN) service provides the health component of a joint integrated health and social care service within the Adult Disability teams. A SLDN identified through case examples that many care staff working within social care providers were unaware of the support they could access through the community palliative care services.

This meant that staff were less well prepared when supporting people with learning disabilities who were identified as approaching or requiring end of life care. This was leading to increased risk of inequity in health delivery due to a lack of referrals being made to local palliative care services for people with learning disabilities.

Evidence indicates that people with learning disabilities have poorer health and shorter life spans than the general population. The findings of an inquiry across a mix of rural and urban communities in five Primary Care Trust (PCT) areas of South West England ‘Confidential inquiry into the premature death of people with learning disabilities’ (2013) and the learning from the ‘The Learning Disabilities Mortality Review (LeDeR) Programme’ (2017) indicates that the inequality gap within healthcare are significant.

What to change

The findings highlighted that people with learning disabilities are at increased risk of end of life care being poorly co-ordinated and receiving less analgesic. The leads were concerned that if staff were unaware of the palliative care services available to them, they would not be able to advocate on behalf of the service users effectively, which could mean the risk of poorly co-ordinated care at the end of life was higher.

The inquiry identified that ‘a lack of recognition of the approaching end of life’ commonly led to problems in coordinating end of life care and providing support to the person and their family. A Health Action Plan was found for a third (34%) of the cohort on a GP register of people with learning disabilities. Having a Health Action Plan had little bearing on whether they’d had a recent Annual Health Check from their GP.

Where Health Action Plans were in place, they seemed to have been used with some degree of effectiveness to facilitate better personal control, as an aide-mémoire to the person themselves about the actions that they should be taking to maintain good health, or to document information about particular aspects of the person’s health, such as their wishes for their end of life care.

How to change

The SLDN and Senior Nurse Specialist in Palliative Care led a pilot to deliver end of life training to all paid care staff in two care homes. Each team received two and a half days of training over a period of four months. The end of life model used was adapted to include the additional learning disability components that the nurses identified through previous case work.

To enable the care homes to contact local professionals, contact sheets were developed for both geographical patches. Meetings took place to discuss the ceiling of care for a service user approaching end of life. This involved a GP working with one of the care homes and the SLDN and Palliative Care Nurse. This had previously not proactively been discussed.

Adding value

Success was measured through the use of confidence questionnaires from pre and post training and there is also evidence of cultural and service changes across the two different organisations.

Better outcomes – There is now increased recognition of the end of life care needs of service users and increased referrals to the palliative care service. The annual review documentation has been updated to include end of life planning. There was an increase in the number of people with learning disabilities referred to specialist care services from this pilot, these included:

• three to psychological support for symptoms relating to trauma and loss, including the deaths of peers
• three to the specialist palliative care services for people who were recognised to be in their last year of life and
• two referrals were made to the specialist loss and bereavement service.

Active case work started for a service user who had been given a terminal diagnosis and another started with the team to understand and manage symptoms of trauma that were identified through the training.

A pain profile, shared on the training course, is now being used for residents and has identified many non-verbal communication symptoms that were previously not recognised as pain.

Better experience – There has been increased recognition of service user trauma and unresolved grief leading to referrals to the Loss and Bereavement service. Staff have increased confidence and given positive feedback regarding the training, including:

• “It has helped me identify emotions & behaviours in a more in depth way”
• “A very well presented course by the trainers everyone in care should have. Thank you.
• “We will be looking at setting up some advance care plans for the service users.”

Families have commented that they feel reassured that staff are thinking and talking about this subject, however difficult.

Better use of resources – There has been increased proactive work between the GP and SLDN in advance care planning. Additional palliative care teaching has been delivered to SLDNs.

The manager of one of the care homes commented

“There’s been a definite marked improvement in team working and communication. We are now following a new handover process that has helped team working”.

The pilot led to a further bid being submitted to replicate the training across a range of social care providers across Hertfordshire, which was successful.

Challenges and lessons learnt for implementation

• A shift in confidence was seen with both nursing and care staff attending the training
• Time to develop, design and produce resources relevant to the staff attending the training and their context

Find out more

For more information contact:

• Louise Jenkins, Strategic Liaison Nurse for Secondary Care and Tertiary Care, Louise.Jenkins@hertfordshire.gov.uk