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18. Dying Matters: providing workplace support for people with a learning disability

Written by Gemma Allen, Palliative Care Inclusion and Community Partnerships Lead at Mary Stevens Hospice and co-investigator on The Victoria and Stuart Project.

Dying Matters is a national campaign led by Hospice UK and for several years I was fortunate to chair ‘Dying Matters Dudley’ a local alliance of health and social care organisations, funeral directors, doulas, and stakeholders, who joined together to deliver events during the year, including Dying Matters Awareness Week.

In addition to awareness and education we also introduced art into our events through poetry, theatre performances, coffin decorating competitions (yes, I have a miniature decorated coffin on my desk!), death cafes and more. One year we hired a camper van and film crew to rove the borough and speak with people about their experiences of death, dying and grief to produce a short film gathering personal stories and thoughts. We visited learning disability day centres, care homes, supported living services, hostels and high streets, engaging with people and communities who often experience inequity in both life and death.

The overall aim of Dying Matters Awareness Week is to open up and normalise conversations about death, dying and bereavement. This year, Dying Matters Week takes place between 8-14 May 2023 and the theme is death, dying and grief in the workplace.

Hospice UK state that in the last 5 years 57% of employees will have experienced a bereavement. However, survey results demonstrated that less than one in five managers feel very confident in supporting bereaved employees. This left me thinking - what does this mean for our colleagues with a learning disability?

In England 5.1% of adults with a learning disability are known to their local authority to be in paid employment (NHS Digital, 2021). People with a learning disability may require additional support or reasonable adjustments to understand and access care when someone is seriously ill or dying and when living with the reality of loss and grief. Whether in paid employment or a voluntary position, everyone should be able to openly communicate about their experiences of caregiving for someone who is ill or dying, if they are seriously ill themselves or when grieving without worrying about stigma or discrimination. Therefore, it is essential our workplaces are supportive environments and that conversations about death, dying and grief take place openly and compassionately.

People may often shy away from these conversations often through a fear of upsetting people or simply not knowing what to say, but this results in the elephant in the room becoming larger. It may be emotive to think and talk about, however it’s important that we do talk about death, dying and grief and be in a position to provide the support our colleagues with and without learning disabilities will need at some point in their lives. So how do we do this?

  • Provision of a supportive employee network that is accessible to all colleagues, including those with a learning disability.

  • Access to resources about issues surrounding death, dying, caregiving and grief. Consider alternative formats of information such as short videos, pictorial resources and easy read information.

  • Find and contact your local hospice for education and training.

  • Know what local and national organisations you can signpost people to if required.

  • Join Hospice UK Compassionate Employers Programme

  • Consider a workplace ‘buddy’ scheme with employees accessing education, training on learning disability awareness, and understanding how better to support colleagues with a learning disability.

  • Start the conversation and get involved in Dying Matters Awareness Week. You can find free resources to download online, register your own event or find an event to visit.

These are just a few ideas of how employers can support people with a learning disability in the workplace on death, dying, caregiving and grief. It is essential that workplaces proactively embed support within wellbeing policy and practice to ensure provision is available, accessible, and inclusive for all colleagues.

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