Cancer patients say targets are put before their care Satisfaction figures and the experience of patients with different forms of cancer vary enormously between NHS trusts.
During the six months Ceinwen Giles spent in a London hospital being treated for non-Hodgkin's lymphoma, some of the carers on the ward did not once address her by name. "Just because you have a good clinical outcome, it doesn't mean you had a good experience," she said.
"The worry is that the way people deal with you can be a proxy for other concerns about your overall treatment," said the young mother, who has now set up Shine, an organisation to support people in their 20s, 30s and 40s diagnosed with cancer.
The Department of Health has been carrying out surveys of cancer patients in England to understand the quality of their treatment, focusing on the way staff treated them rather than clinical outcomes. Responsibility for the survey transferred in April to NHS England, which is due to publish the third survey this summer.
Samantha Riley, director of insight at NHS England, said that there are no plans to stop carrying out the National Cancer Patient Experience Survey. "NHS England is conducting a review of the full survey programme we inherited from the Department of Health to look at how we can get the best out of survey data. We are in the early stages of this review and are starting to set criteria for judging the effectiveness of each of the programmes of work. This does not mean that we will stop carrying out valuable, evidence-based pieces of work that enable service improvement and ultimately improve the lives of patients.
"We want to make sure that all the data we collect on patient experience can be used to make a real difference, coherently, effectively and efficiently, and our review aims to strengthen an already valuable programme of work."
The survey costs about £400,000 and questions more than 70,000 cancer patients about clinical and non-clinical aspects of their care. Among other things, they are asked whether they were given their diagnosis sensitively, whether they understood the information they were given, whether they were given a choice of treatment, and whether they felt involved in decision-making. It also covers privacy and dignity, emotional support, information about benefits, pain control and good team-working between different specialists.
Mike Hobday, director of policy and research at Macmillan Cancer Support said: "Giving patients a positive experience when they're in hospital is as important as good medical care, but sadly there's still a culture in some hospitals where hitting targets is put before the compassionate care of patients. The National Cancer Patient Experience Survey has been hugely effective as a warning system for hospitals to improve their care. It is vital that it continues."
The last cancer patient survey published in August last year showed that, broadly, women are less positive about the way they were treated than men; younger people are less positive than older people; black and minority ethnic groups are less positive than white groups; non-heterosexuals are less positive than heterosexuals; those with a long-term condition are less positive than those without one; and London has the lowest satisfaction figures.
Patients with different forms of cancer fare very differently, with breast cancer and skin cancer patients expressing more satisfaction than those diagnosed with urological, brain, central nervous system cancers and sarcoma.
The satisfaction figures also vary enormously from NHS trust to trust. Harrogate and District NHS foundation trust gained the best overall rating in the last two surveys. It scored particularly well on giving patients well-written information (98% compared with a national average of 86%). Other highly rated trusts include South Tyneside, Papworth, Northumbria Healthcare and Gateshead.
Imperial College was the worst performer of 2012, followed by Whipps Cross and King's College Hospital. University College, where Ceinwen Giles was treated, was also in the bottom 10. Nine of the bottom scoring trusts are in London.
King's has been focused on improving cancer patients' experience. Programme manager for patient-centred care, King's Health Partners cancer programme, Catherine Dale, said: "Comparing performance across different trusts certainly helps to focus minds. In most hospitals, services deal with a wide range of people, not just those with cancer. This means there is the potential that if we get it right for cancer patients we will be getting it right for others, too."
The most improved trust last year was Portsmouth Hospitals NHS trust. It has put up posters identifying the clinical nurse specialist (CNS) in all departments, and all specialities have developed action plans to improve contact with them. The trust now audits patient access to CNSs by telephone, aiming for calls to be returned within 24 hours. Posters also tell patients how to become involved in treatment decisions and that they can bring a friend with them to appointments. The trust has also set up monthly cancer steering board meetings, audits how confident staff feel about managing pain and has increased staff training in communication skills
Prof Don Berwick, US president Barack Obama's former health adviser, identified patient-centredness as one of the six cornerstones of care in his recent report on patient safety.
"It's really hard to work on one aspect without affecting the others," he said. "In fact, I would suspect in Mid Staffs the safety problems that were there were mirroring problems of patient-centredness, problems of effectiveness, even efficiency."
Head of policy and campaigns at Prostate Cancer UK, Drew Lindon, said it is "really vital" to have consistent surveys of cancer patients' experience. The charity has a two-year programme to fund more than 20 specialist nurses and therapists and needs to target areas where patients do not have ready access to clinical nurse specialists. The Guardian