Over the last few years, Willen Hospice teams have been sharing skills with national Milton Keynes-based charity, MacIntyre, to ensure that together we provide the best care for people with learning disabilities.

MacIntyre aims to empower people with learning disabilities and/or autism to live lives that make sense to them. They provide learning, support and care for more than 1,200 children, young people and adults across England and Wales.

MacIntyre’s learning disability nurse visited the Hospice last summer to help our nursing team understand what ‘reasonable adjustments’ a person with a learning disability might need – whether that person is receiving palliative or end of life care themselves, or supporting a loved one who’s receiving care.

Under the Equality Act 2010, public sector organisations have to make changes in their approach or provision to ensure that services are accessible to people living with a learning disability, as well as everybody else. These are called reasonable adjustments.

They may be as simple as a nurse having a conversation with a patient to be completely sure they understand the treatment they’re being offered, or may involve modifying a building to make sure it’s physically accessible for someone in a wheelchair, for example.

Rachel Furniss, Best Practice Health Facilitator at MacIntyre explained; “It’s important that everyone is aware that they can request a reasonable adjustment when accessing health care and feels comfortable doing so when needed. An example we have at MacIntyre is offering visitors the option of sitting in a quiet waiting area instead of a busy waiting room. The impact of this can make the experience feel so much more comfortable and safe.”

Learning Disabilities Champions

Two nurses from each section of the Hospice attended MacIntyre’s training sessions. In the months since then, we’ve set up a Learning Disability Champions group, where nurses from the Hospice, MacIntyre and Milton Keynes University Hospital meet to discuss scenarios they’ve come across and any new research to share.

Together the group are looking at how they can improve the experiences of palliative patients with learning disabilities in the local area. This includes making sure there is good communication and skill sharing between our different organisations, and that staff understand how and when to refer a patient from one organisation to another. Ultimately the group wants all patients to get consistent and timely access to the specialist services they need.

There is also now a resource box in our  In-Patient Unit containing materials and guidance to help our staff communicate with those who have a learning disability. This includes a ‘pain scale’ that uses simple language and pictures of facial expressions to help someone with a learning disability express their level of pain. There is also a similar tool to help healthcare workers assess distress and discomfort by identifying cues in someone who has severely limited communication.

In a return gesture for the training, one of our Clinical Nurse Specialists visited MacIntyre to explain the difference between palliative care and end of life care. As a group, nurses discussed what aspects of being cared for at a Hospice, or visiting one, might present a particular challenge for those with a learning disability.

Easy Read format

Through our close relationship, there have been other opportunities to collaborate. MacIntyre provide a service to translate text into ‘Easy Read’ format, which we’ve used for some of our patient information. Easy read is written in short sentences, with each sentence having just one idea and one verb. Crucially, it uses pictures to support the meaning of the text.

Dying to Talk Project

You may remember we partnered up on the ‘Dying to Talk’ project, delivering workshops and attending online conferences and award ceremonies. Dying to Talk allowed MacIntyre to help the people they work with, as well as families and nursing staff, to understand and feel supported in talking about death and dying.

Following on from Dying to Talk, MacIntyre’s health team are working to:

  • Help people feel less frightened to talk and think about death and dying
  • Provide information and create resources
  • Find ways to actively promote equality, inclusion and best practice for end of life planning

“The impact of working closely with a hospice brings such value to both parties. Sharing good practice and knowledge improves our staff’s confidence to ensure they feel skilled in supporting a person living with a learning disability to have a good end of life. I can’t advocate enough the importance of connecting with your local hospice for support.”

Nicola Payne, Best Practice Manager at MacIntyre