Beth Britton, one of three consultants on the Dying to Talk Project, shares why it’s important for MacIntyre services to connect with their local hospice.
A key part of the Dying to Talk Project is making connections with organisations, services and professionals outside of MacIntyre. MacIntyre have a huge amount of expertise in supporting people with learning disabilities, but it’s important to recognise that the greatest expertise in end of life care and support often lies outside of MacIntyre, most notably within hospices.
What hospices offer
As part of our Phase 1 Dying to Talk training for staff (described in my blog ‘Supporting MacIntyre staff to feel more confident about death and dying’) we regularly reminded staff to connect with their local hospice. Some already had, others were yet to do so, and some weren’t sure who their local hospice was but committed to finding out following the training (Hospice UK have a useful search tool on their website).
This is important because hospices offer a wealth of knowledge, often providing training that can be attended by external professionals, and other opportunities to connect and learn. Hospices help to demystify death and dying, and frequently offer innovative approaches like pre-bereavement counselling. This type of counselling can help staff, families and (where appropriate) the people MacIntyre support to gain more understanding about what is going to happen when someone is terminally ill, and provide vital emotional support at the start of a person’s palliative or end of life care.
In our encouragement to connect with local hospices, we stress to staff that this should ideally be done before a person they support has a terminal diagnosis. This helps to reduce the fear of what a hospice is like, and provide reassurance to a person with a learning disability and their family about what to expect.
As in all of MacIntyre’s support, it’s important that people with a learning disability are comprehensively and meaningfully included in work with hospices in a way that makes sense to them and at a pace that they feel in control of. If a person supported has a terminal illness themselves, or someone in their family or friendship network is terminally ill, it’s crucial that the person is supported to be involved in any aspect of care and support that a hospice is providing if this is what they want.
Willen Hospice and MacIntyre
MacIntyre have worked closely with Willen Hospice in Milton Keynes for many years, much of which I’ve followed through my involvement in MacIntyre’s Dementia Special Interest Group. MacIntyre’s work with Willen has included sharing training and expertise, visits between Willen and MacIntyre services, and Willen staff attending a Dementia Special Interest Group meeting. This partnership has provided rich, mutual learning opportunities which have had a positive impact on the people MacIntyre support.