Sickle cell comes out of the shadows

A patient feedback tool has been developed to capture the experience of patients with sickle cell disease. Led by the Picker Institute Europe, the tool aims to shed light on a ‘hidden’ condition and drive service improvement.

When Avanelle Ogundipe became nurse co-ordinator for a project to find out about the experiences of people with sickle cell disease, she thought it would be a great way to improve health services for this patient group.

But she didn’t expect it to have an almost immediate impact on her own practice.

‘It has changed the way I engage with patients,’ she explains. ‘People feel they have to repeat their story again and again. For the practitioner, that is a failsafe; but from the perspective of the patient, they have to say the same things for the tenth time. It made me think about how we could get round that.

‘I thought, why don’t I recount what I already know about this patient, and the patient can add what they want. It really works – I find out what I need to know, and the patient doesn’t have to go through the same things all the time.’

Ms Ogundipe, PREM (patient reported experience measure) nurse co-ordinator at Imperial College Hospital in London, has been helping to develop and implement a feedback tool to build improvements in services. The idea is to focus directly on patient experience (and on that of parents and children with sickle cell disease) and use the information to build long-term core improvements, and to raise awareness of the healthcare needs of this group.

Development of the tool was led by Picker Institute Europe, a charity that uses people’s experiences to improve the quality of health and social care.

Good feedback will help nurses understand the impact of the care they give

Picture credit: SPL

The project was commissioned by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Northwest London, based at Imperial College London and Chelsea and Westminster Hospital, in partnership with the Sickle Cell Society.

Questionnaires for patients, parents and carers were developed and tested in London, and a refined version is now in use across England.

Picker Institute Europe associate director of health experiences Amy Tallett describes the process so far as ‘eye-opening’. ‘Our overall aim is to obtain a national picture of people with sickle cell disease and their experiences, but we also want people to be able to use the results to improve services locally,’ she says. This is a hidden condition, it causes intense pain and is unpredictable.’

Improved service

Sickle Cell Society chief executive John James is encouraging front line staff to learn from the tool, which covers access to healthcare services, information and support, the experience of seeing clinicians, and management of the condition.

‘Nurses play a pivotal role in delivering day-to-day and emergency care,’ he says. ‘Good feedback will help nurses understand the impact of the care they give and be lauded where they are doing well, while allowing improvements if they are necessary.’

Ms Ogundipe says patients have been ‘very honest’, not just for themselves but because they want to improve the care others receive further down the road.

‘That can be difficult for clinicians to hear, but it is valuable and important information. We must act on it to ensure that services are better for everyone’.

The national survey will run until late summer. For more information or if you can help with asking sickle cell disease patients to fill in a survey, see the Picker Institute Europe website pickereurope.org or email scdsurvey@pickereurope.ac.uk

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