End of life care is a sensitive and difficult time for carers and families of people with learning disability. This inspiring case study from our award-winning FitzRoy Supported Living team in London shows how to get it right.
When one of the people they supported was diagnosed with terminal cancer his life changed immeasurably. He suffered from anxiety, and his family were not able to be involved as much as they’d like, so the FitzRoy team under the expert guidance of Martin McGibbon stepped in. They went out of their way to help him talk about his illness, and cope with his emotions. In true person centred style they listened to his wishes and made them come true.
He wanted to
Marry his partner
Remain at his home for as long as possible
To move only once
They arranged a wedding and the couple were married at the hospice surrounded by friends and family. Despite professionals pushing for him to leave earlier, they supported him to stay in his home, and they made sure he was only moved once, to a hospice. He stayed there until he passed away.
They extended this care to his circle of support, in particular his girlfriend, and the other residents close to him. They worked hard to make the most of his good days’ including trips out and a meal with friends.
They supported his girlfriend to become confident using transport so she could visit him. This frequent contact, along with the wedding the staff arranged, made a huge difference to his wellbeing. At the end they supported his wife to organise every aspect of his funeral.
In each meeting they fought hard to prevent decisions being made that didn’t take his wishes into account. For instance he was adamant that he didn’t want to move home lots of time, and they managed to prevent this, despite calls from health professionals to move him. When he did eventually move to hospice care they researched and found the right place to make sure it would be sufficient to care for him without a further move.
Communication is key
The FitzRoy care team worked hard communicating with a huge number of agencies and health professionals involved in his treatment; private healthcare, the local authority, psychologists, nursing teams, hospice team, a physiotherapist, and more.
By setting up rotas and processes they ensured there weren’t too many people visiting on the same day, his appointments were kept, and his views and feelings were taken into account at every meeting.
Their understanding of his desires and needs was invaluable to informing the decisions made by all the professionals involved.
FitzRoy staff proved that it is possible to provide integrated care that acts in the best interests of mental health as well as physical comfort for individuals with learning disabilities. Person-centred care is at the heart of FitzRoy, because as this story shows, it really does ensure individuals are listened to, and their needs and desires are prioritised.