Patient Voice Takes Centre Stage

Christine Grew with picture of husband David 1

Birmingham’s John Taylor Hospice has joined forces with Macmillan Cancer Support to give patients and their families a direct say in improvements to care.

John Taylor Hospice is using what is known as a ‘fishbowl’ or story-telling session where relatives can talk in detail about their experiences of John Taylor directly with those staff who helped provide care for their loved ones.

Named Every Story Matters, the sessions take place at the Hospice and use the Macmillan Values Based Standards Framework ® and the Hospice brand standard “every moment matters”.

Hospice associate director Tracey Doherty, explained: “At John Taylor we are dedicated to making every moment matter for every person we care for and their families. To achieve this it is essential to have both quantitative and qualitative data and to hear from patients and their families about how they experienced our care.

“We wanted to try a new approach that had a basis in the research evidence about how to capture and act on patients’ and relatives’ stories. The Macmillan Values Based Standards Framework and Every Story Matters, have proved an ideal way for us to do just that.”

The first story-teller was Christine Grew, aged 64, whose husband David received care from John Taylor’s inter-disciplinary team at his Erdington home and at the Hospice. With the family having experienced so many of John Taylor’s services, Christine was able to give extensive feedback.

David was diagnosed with an inoperable brain tumour in 2004 when he was 58. He continued working as a lithographic printer until 2009 when he became too poorly to continue to work.

After experiencing a period of severe pains, in 2012 David and his family were given the devastating news that he had developed a second cancer and this had spread into his hips and spine.

David visited John Taylor Hospice many times, becoming a regular at the Day Hospice and undertaking respite breaks. He also received support from the many different specialists from the Hospice’s care team including the social worker, the Hospice Macmillan nurses, physiotherapists and occupational therapists and his GP and district nurse.

David and his family were determined that he be cared for at their home and, when his condition deteriorated further, John Taylor’s Hospice at Home team were there to provide specialist care, comfort, practical help and support to enable their wish to be fulfilled.

David died on 23 December 2013, aged 67, at his home with his family on hand.

Christine, who has also benefited from sessions with the Hospice’s Well-Being Team, was keen to be involved in Every Story Matters to share her family’s experiences of John Taylor Hospice.

“I can never say enough about John Taylor and their staff and all that they did for David and for me,” she said. “David got to know the staff really well and his face would light up when they arrived to visit. So many of the staff are like family.

“There was nothing more that the Hospice could have done for us. They were really wonderful, always friendly and always caring. They really got to know David and could always make him laugh.

“I just hope that doing Every Story Matters benefits someone else who has dealings with John Taylor Hospice. People hear the word ‘Hospice’ and they think it’s just somewhere that people go and don’t come out of. But we received so much care from there and David was able to be at home, which was really important for us.

“We couldn’t have managed without the Hospice and the other services which provided help to David. I would do anything to give something back and this seemed like a good way of doing that.”

John Taylor Hospice, which became independent of the NHS in 2011, is the only Hospice taking part in the national Macmillan Values Based Standards Framework, which aims to improve cancer care across the country. Within these standards is a commitment to measure and continuously improve the patient and staff experience.

The training from Macmillan ensures that staff can support the patient and family member to feel safe to tell their story. The story-tellers are visited at their home beforehand to explain the process and explore different ways to share their story in the belief that there is always something more to be learned by hearing first-hand what it is like to receive care. Some of the questions from staff are shared with the story-teller beforehand as part of this process and others can be asked on the day with the agreement of the story-teller.

Staff across the Hospice take part in Every Story Matters because everyone has a part to play directly and indirectly in the care provided. The story-telling sessions are open to a small cross-section of the team who take part in the meeting.

Tracey said: “Hearing such positive comments from Christine about the difference the Hospice had made to her and David’s life was as precious to those in the room as it had been for Christine.

“Some staff talked about feeling emotional and proud. There was much to celebrate in what Christine shared with them – particularly that David had no pain, he received the right medication and that he wanted to come back and be cared for at the Hospice and by Hospice staff.”

John Taylor Hospice is aiming to run Every Story Matters events at least three times a year and will be hearing from people who have experienced a range of its services.

Hospice Clinical Director Marie Bradley said: “Every Story Matters is a really effective way for us to learn from the experiences of those we care for and their families.

“It is a technique that is based on good evidence and provides a structured session in a safe environment. It is vital for us to be able to hear directly how what we do has worked and those changes that people with experience of our team at the Hospice recommend, making every moment matter for everyone we care for.”

Hana Ibrahim, Patient Experience Programme Lead, Macmillan Cancer Support said: “John Taylor Hospice is an important partner in our work on improving both patient and staff experience. The work they have done on providing a safe environment for relatives and patients to tell their story has been shared nationally with other healthcare organisations implementing the Macmillan Values Based Standard.”

For more information on John Taylor Hospice please contact 0121 465 2000, email enquiries@johntaylorhospice.org.uk or see www.johntaylorhospice.org.uk

For more information on the Macmillan Values Based Standard Framework please contact Hana at hibrahim@macmillan.org.uk.