Advocacy and medical treatment: George’s story
Some people face barriers to receiving the right treatment. Advocate Sean supported George to get the care he needed when he was diagnosed with terminal cancer.
George* lived at home with his parents. He liked to work at the ‘Gardens’ project near his home, where he helped out most weeks in a supported project with likeminded peers. He was very popular there.
One day George felt unwell, complaining of backache.
After visiting his GP and having some tests carried out, he was admitted to hospital where it was found that he had a terminal illness: a rapid onset cancer which had travelled to various parts of his body and was aggressively attacking his lower back. One of the specialist doctors unwittingly told George that he had ‘cancer’ and George immediately refused to engage with staff or talk about this, choosing only to accept that he had backache.
George’s condition was so severe that he had lost his mobility and needed support with all of his personal care needs.
Returning home would be difficult, and post-discharge planning would also be required.
Making treatment manageable
George already had the support of an Independent Mental Capacity Advocate (IMCA), Sean: an independent professional who is there to ensure George was listened to, and supported to have his rights upheld.
Sean talked with George about what he wanted to happen next. George wanted to get well, and wanted the backache to go.
Sean learned that treatment would help reduce pain, and maybe prolong George’s life for a few months at best. Without treatment George would have days to live.
However, treatment with radiotherapy involved travelling to another hospital and staying still in a machine for 15 minutes – it would be very dangerous for George if he wasn’t able to stay still. George agreed to the treatment if he could have a trial run first to practice staying still. Sean attended a meeting with George’s medical team, and they agreed to the trial run.
Sean also raised the question of where George would go after his treatment. George wanted to go home, but George’s father didn’t want to have people coming in and out of his house all day and night, and said no. Sean shared George’s views with professionals and family, and it was agreed that the best option would be for George to go into a hospice following his treatment.
Sean helped George to understand what a hospice was, and to understand the decision that had been made, using pictures and a social story.
Hospice care
Because of the trial run in the machine, George was able to receive his radiotherapy. Without the trial run, George would have refused the treatment.
George was later transferred to the hospice. Sean visited George there and found that he was comfortable and well looked after.
His family visited him every day, and he was able to watch the start of the World Cup on a large TV on the wall of his room in the hospice.
Sadly, George died a few weeks after being admitted to the hospice. When George was finally taken to the crematorium, next door to the Gardens project, staff and his friends from the Gardens lined up and clapped as his coffin was taken past.
* To protect people’s privacy we don’t use their real names, but their stories are genuine.