Case study: Staffordshire – Patient champions’ stories
1.1“The Most Devastating Words You Can Hear…”
Jen Richards’ description of the moment she was told she had cancer will ring true for many patients undergoing treatment.
“They are the most devastating words you can hear,” she says. “You think you understand what it must be like, but until you are that person you have no idea.”
Jen describes herself as a strong person and the demands of her 29 years’ service and role as a police inspector in the West Midlands means she has tackled many challenges. But everything changed when Jen, who lives near Stafford, was diagnosed with breast cancer and she began to undergo treatment.
It is Jen’s experiences and frustrations that led to her joining the Transforming Cancer and End of Life Care programme as a patient champion. She says the consultants, nurses and others who treated her were brilliant but what she describes as ‘red tape’ and ‘bureaucracy’ caused complications.
“Systems are not joined-up. The systems don’t seem to talk to each other and information is not always properly transferred from one hospital to another.”
Jen was concerned the cancer would return and decided she wanted to have her other breast removed but she was transferred back to her GP, although she was already undergoing treatment. She agrees patients often become frustrated having to repeat their circumstances to different healthcare professionals again and again.
“It was an awful time of worry I had to go through. It’s the frustration of waiting for letters and referrals and it led to depression. We are not statistics, we are individuals. This is all about the experiences of patients.”
Jen joined the programme and has worked to publicise her experiences and offer her own unique insight into cancer care in Stoke-on-Trent and Staffordshire. She works closely with GPs, commissioners and other patient champions to evaluate organisations bidding for the cancer contract.
“We’ve been through or we’re going through treatment in Staffordshire so we understand there is great care, but we need to ensure the patient is at the heart of everything we do. We can bring our own experiences to the table and we know what is good, but we also know what needs to change.”
Jen has become a regular media commentator for the programme and has recently featured on BBC Radio 4’s File on Four, as well as BBC’s Sunday Politics and BBC Radio Stoke.
‘I’m extremely passionate in my support for the programme and driven by the desire to make a harsh journey better for patients.’
1.2I was given six months to live in 1994 and I’m still fighting for better end of life care
Former actor and teacher Maurice Greenham has been living with HIV for 30 years and is a dedicated and passionate campaigner for better health services for older people.
Maurice’s desire for positive change in the NHS is based on his personal experiences with end of life care and treatment, as well as the death of his mother and close friends.
In 1984 Maurice was diagnosed with HIV and a decade later he was diagnosed with AIDS but took the decision to refuse what he describes as a ‘highly toxic’drug AZT because reports indicated that it was killing as many people as it was saving, and at the time he felt well.
“In 1994 I developed AIDS and was given six months to live, so I sortedout a power of attorney and arranged my funeral,” he says.
In the years since his diagnosis, Maurice has given his support to research, worked as an HIV activist and appeared on numerous occasions on television and radio.He haswitnessed the experiences of close friends and family with end of life care.
He was chief carer for his elderly mother and says when she went into hospital his intervention and support made a big difference when staff refused to prescribe morphine and she was prescribed an ‘inappropriate drug’. “It was a slog and extremely difficult at times but we have to work to make these changes and persevere. We have to put the patient at the centre of things.”
When Maurice and friends visited a friend in hospital they witnessed him behaving in an unusual manner and it was their persistence that led to the discovery of a brain tumour.Unfortunately their friend died in hospital but Maurice and friends organised music and readings in his final hours after convincing staff it was the right thing to do.
“We got him out of the public ward and into his own room. It was a good send-off.”
It is Maurice’s frustrations and experiences with end of life care that led to him joining the Transforming Cancer and End of Life Care programme as a patient champion. “I was interested in anything that could really make a difference to end of life care,” he says. “And I want to give a voice to people who don’t feel they’re being heard, especially older gay, lesbian, bisexual and transgender people and those living with HIV.”
Maurice feels the NHS needs to do better when it comes to caring for older people with HIV. “I want to work to help drive that positive change.”
Contact: Justine Palin, Programme Director
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