When we carried out interviews with 15 cancer patients and 31 staff involved in a patient-centred project at Guy's and St Thomas' hospital and King's College Hospital everyone agreed that, despite excellent clinical care, there was potential to improve care in ways that did not involve more work for staff or great financial investment.
Patients remembered small acts of kindness with gratitude, and many were impressed at how their privacy and dignity had been safeguarded. One patient told us:
'Once, the nurse needed to wash my hair. She was quite young and she was aware that I didn't want to strip off. She said that if I wrapped myself in a towel, she could do it in the bath. I really appreciated that.'
Patients also recalled a volunteer offering nail care to distract patients on the ward; a clinic clerk who always gave outpatients the name of a specific member of staff to ask for on arrival; and staff arranging an early Christmas for someone who was dying.
But a single negative experience, particularly if it was perceived as unkind or grossly insensitive, could tarnish a patient's entire experience of care. Such instances were rare, however. More frequently, patients criticised that staff did not proactively offer support, even if they provided it on request.
Patient choice and the promised 'information revolution' are key to the government's proposals for NHS reform. Some patients we spoke to had problems finding good information, citing poor-quality leaflets and a failure to correct written information following feedback. One person we interviewed felt that patients were not always given the right information to give their informed consent to treatment. As she explained:
'With cancer care, we patients have to 'buy the product', but you don't get told the reality of what you are signing up for, eg that radiotherapy may only be ten minutes on the table but it is four hours in the department. It's not as though we are going to say we don't want it, so why don't they tell us?'
These concerns could be addressed without any major policy shifts or significant cost.
In particular, many patients spoke with emotion about their distress at poor environments, seeing them as symbolic of everything that was negative about their illness. Waiting areas were the biggest concern, and although some alterations might require considerable investment – refurbishing seating areas and 'airless, windowless, claustrophobic' chemotherapy units, for example – others could be addressed much more easily, such as adding pay-phones in areas where mobile phones do not work. As one patient eloquently put it:
'When I had my assessment CT scan they had a huge fish tank that was empty. Either get rid of it, or fill it with fish!'
Even in these financially challenging times, when refurbishing a waiting room may be pushed further down the to-do list, staff can make small changes to help to enhance the environment for patients. Bringing tea and other drinks for patients in the waiting area can make a real difference to a long wait. And introducing art into the patients' areas can also be beneficial:
'I am always struck by how art installations tend to be in the corridors and areas where people pass through – not where the patients are. There is evidence for the therapeutic benefits of art and beauty – these things do make a difference.'
Most patients appreciated efforts to involve their families. One staff member said that they would reschedule a patient's appointment if a family member was not able to make the appointment time. Simple considerations and small changes can make a big difference.
So how can we ensure that staff have the time and, more importantly, the motivation to make these changes? We know that doctors, nurses and other staff can make a huge difference to patient experience over and above the direct clinical work. And it is often nurses who patients speak to about the changes they would like to see. Yet over time and under pressure, health professionals feel they can become desensitised to patients needs.
The real challenge is not to tell nurses what to do more of: it is for NHS leaders and managers to recognise and respond to the fact that both patients and staff need support.
And where changes in policy or major environmental changes are required, the health care system needs to empower staff to contribute to – and often to lead on – these larger changes.
All of these interventions, large and small, are most likely to make the right kind of difference if they are based on continuing dialogue with those who use services – patients and their families and friends – and those who care for them. the Point of Care programme encourages these conversations to continue.
The interviews informing this blog were carried out by Ros Levenson and Nikki Joule at Guy's and St Thomas' NHS Foundation Trust and King's College Hospital NHS Foundation Trust between April and July 2009.