Learning Disability Health Advocates

Project overview

Following an increase in the number of people with learning disabilities on the hospice caseload, Birmingham Hospice was keen to improve standards of care for this patient group.

To do this, the hospice invited staff members who are passionate about improving care for this patient group to form a group of Learning Disability Health Advocates. Group members might have a family member with a learning disability, or have worked closely with people who have learning disabilities.

The group aims to use creative approaches to find new ways of practice that:

• are evidence-based
• are feasible in the hospice environment
• improve standards of care for people with learning disabilities.

Outcomes

The group identified the key aims of the project, which they have mapped out in a driver diagram. They have tested small-scale changes using the Plan, Do, Study, Act (PDSA) cycle before rolling out across the hospice.

They have developed a Patient Charter for people with learning disabilities, which sets out what patients can expect from their care. It includes protocols about reasonable adjustments that hospice staff can make for this patient group.

Some of the Learning Disability Health Advocates have undertaken training in ‘words plus’ communication, with the rest of the group planning to complete the training soon. This is a way to communicate using easy to understand words, body language, pictures and acting scenarios. As well as helping staff communicate with people who have learning disabilities, this can also be used with patients and carers who do not speak English as a first language, and those with neurological conditions who struggle with comprehension.

Although the group is in the early stages of the improvement programme, it has already received positive feedback from patients with learning disabilities. Patients really value the time that the hospice is taking to understand their needs and have commented that this might not be possible if they were in hospital.

Key facilitators

The Learning Disability Health Advocates are passionate about the improvement programme. Their line managers are being supportive in giving them extra time to work on the programme when possible. 

Members of the group come from all over the hospice, not just the clinical team, which means they have a wide range of skillsets and think in different ways to solve challenges. 

The hospice has several improvement programmes in progress, and the Learning Disability Health Advocates have been able to integrate their work with other projects. For example, people with learning disabilities have been included in a project about pain assessment. 

Birmingham’s Integrated Care Board (ICB) is undertaking a health inequalities project and has developed 20 priorities for people with learning disabilities. The hospice has approached the ICB and now co-ordinates and advises on the palliative and end of life care aspects of this work. The ICB also carried out a peer assessment of the hospice’s work.

The hospice plans to develop resources for staff, patients and carers to improve ways of working with people who have learning disabilities. This might include easy-read leaflets, videos and a resource hub. The group plans to co-produce these resources with patients and is looking for suitable funding. 

The ultimate aim for the Learning Disability Health Advocates is to engage with patients who have learning disabilities and co-design improvements to the hospice’s services. This will help ensure that patients can identify the changes that will most benefit them.

The group also plans to create an alert on the patient records system, so that a Health Advocate is alerted any time a patient with a learning disability is added to the system. This will help ensure all patients with learning disabilities are supported by the multi-disciplinary team, according to their needs.