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Tuesday 25 October 2016
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Patient ownership

Patient ownership

It’s no secret that the NHS is encouraging patients to take control of their health. But this can prove difficult with language and cultural barriers in place. In Bradford a pilot took place to help improve self-management of diabetes

As every practice manager will know diabetes is on the increase. There are currently 2.8 million people living with diagnosed diabetes in England and half a million people living with undiagnosed diabetes. This is 6% of the adult population. With obesity on the increase diabetes rates are likely to follow. We urgently need to find ways to support people to prevent the onset of diabetes and if diabetes’ develops, to help manage the condition to avoid complications such as blindness and amputation.
Diabetic eye disease is the leading cause of avoidable sight loss among the working age population in the UK. More than 1,500 people are certified as visually impaired in England each year as a result of diabetic eye disease. It is for this reason that the Royal National Institute of Blind People (RNIB) chose to work with health services and communities in Bradford, North East England to find ways of improving patients’ access to eye care services and support for self-management of diabetes. The Department of Health helped to fund this work through the Innovation, Excellence and Strategic Development Fund (IESD).
Our research showed that people living with diabetes find it a complex condition to understand and manage. People struggle with all the information relating to diabetes, healthcare appointments and understanding their targets. Some people don’t understand the need for both eye examinations and diabetic retinopathy screening. People are sometimes in denial about the condition, they do not understand prevention, and have a sense of fatalism: “If I’m to go blind that’s God’s will.”
Primary care professionals also find diabetes a difficult condition and describe feeling overwhelmed, snowed under and on a treadmill trying to deal with the burden of diabetes. At times health professionals can be frustrated that their patients don’t seem to take responsibility for their condition. This can lead primary care staff to feeling helpless, especially with little time to see patients particularly patients who struggle to effectively manage their diabetes. Co-ordinating and sharing information among professionals is also a challenge and does not always happen.
RNIB and Action for Blind People, a sight loss charity, worked with local health services and communities to pilot a suite of interventions to improve access to services and self-management. The interventions included the screening service sending a text to remind people about their appointments and employing a bilingual worker to phone people to remind them about their hospital appointment at the diabetic ophthalmology clinic.

The initial pilot
In Keighley, Bradford, there was an additional range of interventions specifically targeted at people of Pakistani heritage living with diabetes aged 40 to 65. Five practices in Keighley were involved in this initial pilot. Four hundred Pakistani heritage patients with diabetes were given a self-care folder called Living Well with Diabetes. The folder was designed to help patients keep a record of their appointments, to monitor their blood pressure, HbA1c, cholesterol, weight/BMI, medications and most importantly to facilitate discussion between health professionals and patients about lifestyle changes to manage diabetes.
Practice staff attended training on motivational interviewing and used this approach with the folder in their consultations with patients. So the consultation was focused on the concerns of patients, identified what patients’ already know and helped them agree goals about how they could improve their management of diabetes.
The initial pilot with five practices in Keighley started in July 2012 and was completed in December 2013. To help reinforce the key messages about living well with diabetes and create understanding within the wider community, a programme of community engagement was developed. Health professionals such as pharmacists, optometrists and screening staff were encouraged to give consistent key messages, as were local religious and community leaders. In addition, a traditional Sufi story, a teaching story used to impart wisdom, Tether my Camel drawing on the Islamic faith of the community, was used as a focus for discussion to challenge a sense of fatalism and encourage people to take responsibility for their health.
The self-care folders were particularly popular with the GP practices. Practices found the folders a useful way of refocusing consultations to empower patients to take greater control and responsibility for managing their diabetes. Bradford District, Bradford City CCG and Airedale CCG decided to extend funding for this element of the work to reach up to 12,000 patients in 30 GP practices. This began in December 2013 and continued until July 2015.
Elaine Appelbee, project manager for RNIB, who led the work for RNIB in Bradford points out that “although the original research was carried out with the Pakistani heritage community all the professionals involved recognised there were strong similarities with the understanding and behaviour of people from other communities; class and educational level have more impact on how people manage diabetes than ethnicity alone.”

The London School of Hygiene and Tropical Medicine conducted an independent process, outcome and economic evaluation of the initial pilot. It found that diabetic retinopathy screening went up across Bradford by 10% and within the five practices in Keighley involved in the pilot by 15%. The patients in Keighley were invited to take part in a questionnaire survey and this showed that knowledge about how to manage diabetes improved. There was a 15% increase in understanding about the need to attend both eye examinations and screening and a 23% increase in understanding about the need to check blood sugars and attend appointments to reduce complications.
Working with the 30 GP practices we struggled to gather useful data about the impact of the folders on the patients. Most of the practices did not provide pre and post intervention evaluation data. In future work we recognise we need to do more to simplify the data required from practices and spend more time engaging with practices.

Helping healthcare professionals
Through our work with the 30 GP Practices in Bradford it became clear that staff need support and training to use motivational interviewing with patients to make best use of the folder. Primary care staff often feel like ‘talking leaflets’ giving so much information to their patients. Using motivation interviewing can help create a more patient-centred consultation and support patients to take responsibility for their health.
Other elements of success were identified such as health professionals having sufficient time to work with patients; investing time to help patients manage diabetes will, in the future, save time and resources for the health service. Patients need encouragement to remember to bring the folder with them to appointments. For example, sending a text reminder or having a display in the waiting room can be helpful. To have the most impact the whole practice team needs to be onboard with the use of the self management folders and motivational interviewing. Reception staff can remind diabetic patients when booking appointments to bring the Living Well with Diabetes folder with them. The practice nurse and GP asks the patient to record HbA1c etc in the folder and use this as an opportunity to discuss how they are managing. Nurses and GPs use the My Action Plan section of the folder to ask patients about how their concerns relating to living with diabetes and encourages them to set realistic specific goals that are a priority for the patient. The My Action Plan section includes the following prompts:

  • Work on things that bother me.
  • Stay active.
  • Take my medicines regularly.
  • Eat and drink healthily.
  • Cut down or give up smoking.
  • Relax more.

Nurses, healthcare assistants and GPs also gave consistent messages about living well with diabetes relating to going to all appointments, eating well, exercising regularly, taking medicines regularly. Staff had a leaflet to give out to patients to reinforce the information they gave. The self-management folder and leaflet were designed for people with low levels of health literacy; so included colourful pictures and simple clear text.
Healthcare assistants and reception staff helped to set up displays encouraging people to make use of the folders and live well with diabetes.
The Living Well with Diabetes folder can be used alongside other initiatives such as the Diabetes Year of Care. It is designed as a scalable low-cost intervention using existing resources more efficiently.

Community care
Having a community education and awareness programme where optometrists, podiatrists, screening staff and pharmacists are all giving consistent messages about living well with diabetes alongside community activists can help create understanding and a supportive environment for people living with the condition.
We are able to use learning from Bradford to inform work in Leeds, Liverpool and Manchester.
We will be working with GP practices helping them to improve the support on offer to people living with diabetes and developing a network of volunteers and eye health champions to shift attitudes within the wider community.
We are delighted that our partnership work to help support people manage diabetes has been recognised nationally having won the prestigious Quality in Care Diabetes 2015 award for best initiative supporting self-care.
Greg Fell, director of public health in Sheffield who championed the work highlights that “we’ve found a way of implementing self care that actually makes sense to the people who have the condition”.

Feedback from health professionals
Health professionals indicated what they felt worked well in relation to using the Living Well with Diabetes folders but also the challenges. Names can not be given for confidential reasons.

  • “Talking through the ‘results’ page with people, I realised that they don’t understand the difference between ‘hypo’ and ‘hyper’ so then they take the wrong action to try to put it right.” – Practice nurse
  • “Going through people’s medication with them in order to enter it into the folder showed me how little people know about the medicines they take.” – GP
  • “A Mum who has a son with learning disabilities living independently finds it useful to keep track of which appointments he has been to.” – Practice nurse

But there were also challenges:

  • “I am snowed under with work. This, together with the time constraints of the appointment mean more often than not I only have time to give the folder out and do not have time to do the motivational interviewing part to try and support and encourage the patient to change their behaviour.” – Practice nurse
  • “Due to time restrictions, language barriers and lack of patient interest the project has not worked in this practice.” – Practice nurse
  • “Patients believe what is said in the community and not what their healthcare professional is saying.” – Practice nurse

Helen Lee, evidence and service impact manager, RNIB.