Building bridges: improving access to end of life care for people with learning disabilities

Last week, The Prince & Princess of Wales Hospice in Glasgow hosted a stakeholder event to celebrate the success of the Building Bridges Project – which has sought to enhance access to end of life care for people with learning disabilities.

The project began with an initial scoping exercise in 2011 by the hospice’s then education manager Libby Milton, funded by a seed corn grant from the Burdett Widening Access Through Nurse Leadership Programme.

Building on the findings of the scoping exercise, a major grant (from the same project) and funding from the Scottish Government enabled Liz Smith, hospice practice development facilitator, to work with seconded learning disability nurse leader Allison O’Donnell to develop this project.

As they come to the end of their three-year project they have much to celebrate, including:

• almost 500 hours of face-to-face teaching for palliative care and learning disability staff
• a significant amount of professional advice and liaison to primary, acute and secondary care both in Scotland and throughout the UK
• the relaunch and co-chairing of the Scottish Group of the Palliative Care for People with Learning Disabilities Network
• representation on a number of working groups which have influenced local and national practice and policy 
• the development of a group of ‘key practitioners’ drawn from local hospices and learning disability teams
• the development and piloting of a care pathway to support people with learning disabilities through the palliative care journey
• the development of a range of resources to support the implementation of the pathway and development of a website to host these.

It’s hard to imagine that so much can have been achieved by just two individuals over the past three years.

While it has been known for more than a decade that cross agency collaboration is essential for good end of life care of people with learning disabilities, enabling it has not proved easy for previous projects(1).

Key practitioners

The difference in the Building Bridges Project would appear to be the strategic approach that has been taken with the development of ‘key practitioners’. Rather than relying on self appointed ‘champions’, CEOs and senior managers of hospices and learning disability teams have been encouraged to appoint, mandate and resource key individuals.

Consequently, these practitioners have been freed to undertake the ‘bite size’ training sessions the project leaders have provided and have been given authority to implement the necessary changes to practice in their own settings, including developing partnership working.

Tools and resources

Another important example of this is the development of a programme of training on the Disability Distress Assessment Tool (DisDAT).

At the celebration event, key practitioners highlighted how a robust working knowledge of this tool has changed their practice in assessing and meeting the communication and symptom management needs of patients – and not only those with a learning disability, but also where verbal communication may be difficult due to disease or other factors.

A film of the key practitioners talking about the success of this model and its benefits can be found on YouTube.

The six-month pilot of the palliative care pathway has been subject to a multi-modal evaluation of effectiveness utilising the Health Equalities Framework, questionnaires, a diary system for patients and carers and a database for recording outcomes.

The findings of the project are still provisional until the evaluation is complete, however it is of interest to note that:

• a high proportion (37%) of those people on the pathway had dementia (26% had cancer)
• the range and number of people and professionals involved in the development of a general care plan for the person is much higher than for patients without a learning disability
• by being on the pathway many more of these patients were entered onto a palliative or supportive care register
• the number of patients with a general care plan rose from 50% to 95%
• before the pilot, in only 20% of the cases was there was evidence of an Anticipatory Care Plan (ACP) discussion or creation of an ACP, this rose to 91% by the end of the pilot
• the range of tools utilised to support people with a learning disability at end of life, or in developing an ACP, was greatly increased and included a mixture of tools familiar to palliative care (such as the Gold Standards Framework) or to learning disability professions (such as life story books).

It is no wonder that this project has received recognition from a number of national organisations, not least the Scottish Government, or that it has received a number of awards.

“Collaboration is vital”

One of the speakers on the day, Tom Kelly, professional lead for nursing for learning disabilities, NHS Greater Glasgow & Clyde, acknowledged that the change model employed by the project can be “drawn on to support staff in all areas” and that “other areas of care could benefit from it.” His conclusion was that “collaboration is vital – our services need to be designed to reflect that.”

The celebration included not just stakeholders from senior positions within the Scottish hospice or learning disabilities worlds, but people with learning disabilities, who have been involved in training professionals, as well as carers, family members and Ian Hastings – the learning disabled gentleman who designed the ‘Building Bridges’ logo.

Also integral to this celebration was a formal recognition of the amazing care given by one foster carer to a gentleman at the end of his life, which enabled him to die peacefully in his place of choice.

“We have just begun”

It is clear that the mixture of passion, vision and commitment to partnership is a powerful mix which has significantly contributed to ensuring that equitable end of life care for people with learning disabilities has changed from seemingly impossible to being possible and, because of their structured, strategic approach, highly probable.

The project’s leaders commented “we feel we have just begun to open a large can of worms and that there is much more to be done” and challenged their multi-professional audience to take up the baton to continue the work.

Congratulations and celebrations are well deserved.

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