Improving learning disability experience for those in end-of-life care

Willen Hospice

Willen Hospice is an adult hospice in Milton Keynes, Buckinghamshire which provides specialist care for people with a terminal illness at the end of their life.

Staff and volunteers at Willen Hospice provide specialist support to patients and family members, helping them with the physical and emotional effects of both the illness and subsequent treatments.

The Hospice works closely with GPs, hospitals, community nursing staff and social workers to ensure specialist care is practical, informed, and supportive at all levels. Willen Hospice won a CHKS Top Hospitals Award 2022 thanks to an education project to raise awareness among clinical staff about caring for people with learning disabilities.

How an improvement culture will help to improve experience for those living with learning disabilities

Willen Hospice has been through the CHKS accreditation process three times, and this has helped to create a culture where every individual working there is conscious of the importance of striving for excellence. This culture of continuous improvement drives everything the Hospice does. Encouraging collaborative working across the organisation has laid the foundations for thinking creatively about how improvement can be achieved and how each department can work together for a common purpose.

When Hospice UK highlighted that certain demographic groups were underrepresented in hospice care, Willen Hospice decided to set up an awareness programme to ensure it could provide the best experience for people with learning disabilities.

While, in general, the Willen Hospice does not care for a high number of people with learning disabilities, the Senior Leadership Team recognised that having an understanding and awareness of the daily lived experiences of someone with a learning disability would contribute to staff’s ability to provide the best care possible.

Caroline Loxton is the Practice Development Lead at Willen Hospice. The Trusts and Foundations Manager at Willen Hospice worked with Caroline to apply for a grant to fund the project which has seen a large part of the 83-strong team undertake the Learning Disability awareness training.

The project required cross departmental working led by Caroline who also created and delivered the training in partnership with the Learning Disability Nurse at MacIntyre Charity, which supports and empowers people with a learning disability.

”Working together closely with the charity has helped us meet our shared objectives.”

Caroline Loxton, Practice Development Lead at Willen Hospice

Improving education and communication to ensure accessibility for all

It was seen as vital that an understanding of the needs of people with learning disabilities was reflected across the whole organisation, not just within the clinical team. This included, for example, the importance of accessible literature, including information leaflets.

“We have information in braille and other languages but working with the Learning Disabilities Nurse from MacIntyre highlighted that we also need information accessible in an Easy Read format, which has more images and fewer sentences. The MacIntyre Charity has an Easy Read team whom we now have access to assist our new process of improving accessibility of information we communicate. We want to make sure that everything we are giving out across the organisation is accessible to everyone.”

Caroline Loxton, Practice Development Lead at Willen Hospice

As part of the project, Learning Disability Champions were created, and included representatives from all the clinical teams. This meant that the learning and expertise could continue to be shared throughout the teams once the project and budget had ended.

The Champions spent time with the Learning Disability Nurse from MacIntyre who was able to provide a glimpse into the life of people who have learning disabilities, their experiences and their healthcare needs.

”Staff felt the experience was eye-opening and said they appreciated both the opportunity to see what is was like from the view of a person with a learning disability and also learn about the role of the Learning Disability Nurse.”

Caroline Loxton, Practice Development Lead at Willen Hospice

The feedback and experiences of the Learning Disability Champions were included within the education sessions.

Working with the Learning Disability Nurse, Caroline put together a programme of blended learning consisting of both e-learning (setting out the theory) and a two-hour experiential face to face session. Staff took part in several activities that put them in the place of a person with learning disabilities, highlighting some of the situations that they might encounter, and giving staff the opportunity to empathise with how they might be affected.

Feedback about the programme has been positive, both from those who have taken part and from the Senior Leadership Team, who invited Caroline to present the project at the Council of Management to understand how the project has improved clinical practice.

So far, eight sessions have been carried out with an average of seven people attending each time.

”One of the challenges was how we could support all our teams through this, taking into account the constraints of shift working. We were grateful that staff were released to take part in the sessions and were able to benefit from the Learning Disability Nurse’s experience first hand.”

Caroline Loxton, Practice Development Lead at Willen Hospice

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