Living and dying well in social housing

  • In Wales, almost 60% of people die in hospital even though most say this is the place they would least like to be.
  • On average, a person spends a month of their final year in hospital.
  • Two-thirds of people say they would prefer to die at home.

Often it is not clinically necessary for someone at the end of their life to be in hospital and it is unsustainable in respect of medical resources. We need to think about different community-based models of care and support for people with terminal illnesses which make sure they can spend the end of their lives in the most appropriate place for them with the care they need. This involves making sure the environment they’re in is suitable for both their physical and social needs. The contribution that housing makes to the experience of someone at the end of their life tends to be overlooked.

In our new report ‘Dying at home: The role of social housing providers in supporting terminally ill people in Wales’ we have worked with Community Housing Cymru and social housing providers - i.e. local authorities or not-for-profit organisations  called registered social landlords (RSLs) – to find out about their experiences of providing end of life support and care to their tenants. The report looks at what is working well and identifies opportunities for improving things in the future.

We found that specialist accommodation for older people and people with particular conditions such as dementia has great potential to be a suitable environment for delivering high quality support and care for people approaching the end of life. Housing adaptations and equipment can also make a big difference to someone’s quality of life, and the support that housing staff can offer when they are properly trained on this issue can result in people being more prepared and able to live their final months as they wish. This can mean fewer stressful unplanned admissions and less precious time spent in hospital.

It is important that housing providers are supported to enable them to become part of a wider team that contributes to improving the wellbeing of someone with a terminal illness. This team might include doctors, nurses, healthcare assistants, social workers, occupational therapists, housing staff, the third sector, volunteers, family and more. Communication, sharing skills, creative thinking and working collaboratively are essential for this to be as effective as possible.

Our report makes a series of recommendations towards achieving these ends, which include:

  • Frontline staff should receive sufficient training to support tenants with end of life needs and to maintain their own wellbeing, including training in how to comfortably approach conversations about the end of life.
  • Creative and flexible uses of resources within sheltered housing and extra care schemes should be further pursued.
  • Local authorities should actively involve housing providers in planning community based approaches to meeting end of life needs.
  • Organisations responsible for setting policy, strategy and budgets should recognise the role that can be played by social housing providers in the provision of sustainable care and support for terminally ill people that more closely matches their needs and wants.

In Wales, the Health, Housing and Social Care Network offers an opportunity to bring these different partners together. It can be a space to consider a collaborative and proactive approach to supporting and caring for dying people which appreciates the individual as a whole person, not just as a patient.

At the Marie Curie workshop at the network’s conference on 17 July, we aim to instigate some of these wider discussions about how we can all improve the quality of life of terminally ill people and their families in the future.