Stephen's story

How person-centred thinking tools like one-page profiles can help people get the right support at the end of their life whilst helping family, friends and professionals through the journey.

Sixty-two-year-old Stephen lived in Karelia Court, a home run by Hull City Council which specialises in supporting people with autism. Stephen's autism affected his communication and interaction with people but despite this he was able to express his wishes clearly and choose his own support using 'person-centred thinking tools'. Hull City Council has been introducing use of these tools within adult social services.

Stephen's home ran a staff training programme, changed some of their working arrangements and introduced a series of support structures. Each of these actions helped change the culture of Karelia Court, putting person-centred thinking at the forefront of support. The cultural changes affected the way people living and working in the home interacted with each other, as well as having an impact on paperwork and care planning.

The people working at Karelia Court wanted to support Stephen in the way he wished, so they used a one-page profile to help record what was important to him and how best to support him. For Stephen, it meant that he was able to live life the way he chose whilst receiving the support he needed. This approach became all the more important when in 2011 Stephen was diagnosed with advanced oesophageal cancer. As a man with autism, routine and familiarity were very important to him, and his diagnosis meant that he was going to experience a number of changes and come into contact with many more professionals involved in his care.

Following discussions between family, carers, clinicians, and Stephen, palliative care was agreed to be the most appropriate treatment. For the team working at Karelia Court, this meant ensuring that their values, in terms of providing person-centred care, continued, because the new people involved in Stephen's support were able to use his one-page profile to understand him and how best to support him.

Stephen remained at Karelia Court and received some in-patient care at Dove House Hospice. This reduced the chances of Stephen having to make unnecessary hospital admissions, which would have caused him additional distress. It also meant that teams were able to work together – Karelia Court sharing their knowledge of autism and Dove House Hospice sharing knowledge about end of life care. Most importantly though, it meant that Stephen's person-centred support continued and one of his dreams was realised. Stephen met Hull City Football Club players after staff at the Hospice read that he was an avid supporter in his 'If I could, I would' statement; one of the person-centred thinking tools used at Karelia Court.

Sadly Stephen's condition worsened and he passed away in January 2012 but the person-centred support he received from teams at Karelia Court and Dove House Hospice never faltered. The visits from friends and family that he had expressed as being so important to him meant that he passed peacefully with his loved ones by his side.

Since Stephen's death, all the organisations involved in supporting him have come together to reflect on what they learned and to ensure that care for other supported people at the end of their life is always of a high quality.

Keeping Stephen at the heart of all planning, sharing information and constantly talking to him about what he wanted and needed, meant was able to make decisions about his care all the way through – even planning where he wanted to be at the end of his life. It also meant that his brother and sister were able to spend time with him without worrying about the practical elements of his care, that medical staff and support workers were confident that they were acting in his best interests, and that Stephen himself was comfortable throughout. Reflecting on the support Stephen received and how he was at the end of his life, his brother said; “If my death is half as good as Stephen's was, then I would be happy.”

Talking about the benefits that person-centred care had on Stephen and how tools like one-page profiles could help others, Tracy Meyerhoff, Assistant Head of Adult Services (Hull City Council) said, “We realised through working with Stephen that it was the simple things that mattered to him, and for him good care meant providing seamless support and knowing him well.”

Tracy Meyerhoff added:

“We have new ways of working, and we recognise person-centred thinking tools for the positive impact they can have. They help to ensure that the person is not lost in a chaotic and confusing time, and they continue to influence decisions throughout their medical journey.”