No more groundhog days

Shared decision making and self-management support can sound a bit woolly – nice, but not really medicine. Haemodialysis is hardcore medicine – instantly life-saving, it takes place in hospital with shiny, high tech equipment and a clinical team doing things to you. What happens if you try to bring the two together?

That’s what the renal team are doing in Shared Haemodialysis Care in Yorkshire and Humber. And it’s inspirational, a quiet revolution. In their own words: ‘We aim to transform hospital based haemodialysis...from a staff-led service to a patient-staff shared self-management programme, embedded through the provision of educational support to nursing staff, patients and carers ... we have adapted the term to "shared" care in order to emphasise partnership between the patient and their health care team.’ Challenging stuff.

Why shared haemodialysis? Day-by-day, week-by-week, month-by-month, the same person will have different capabilities to manage their own haemodialysis. The team described one patient who was learning to needle themselves at the same time they were diagnosed with breast cancer. They stopped: it was too much to cope with. A few weeks later they started again.

The approach is non-judgemental and supports people where they are at that time. Apparently in the 1970s/80s there was a big move to home haemodialysis – but this was the NHS deciding it was a good thing and ‘guiding’ patients into it. If sharing haemodialysis increases home haemodialysis, it will be from choice rather than direction.

The inspiration for the project came from DAFNE (Dose Adjusted For Normal Eating). Traditionally people with Type 1 diabetes were told ‘you now have to live your life around your insulin injections’. DAFNE equips and empowers them to manage their insulin injections around their lives. DAFNE was brought to Sheffield by Simon Heller, a diabetologist who works in the same hospital as the Shared Haemodialysis Care project.

The team has really thought through how to embed change. They start with peer-to-peer engagement of senior staff – one-to-one face time to get buy-in and leadership: matrons inspire matrons, doctors role model for doctors.

There is a three day training course for frontline staff. The aim is to get 25% of staff through this course – a big ask, but having the buy-in of ward leaders is making it easier – and the trained staff then cascade how to work differently to their peers.

Staff are trained according to their knowledge and learning styles. People with end stage renal failure are trained according to their level of interest and ability. Training for all new ward staff is being embedded. The skills to negotiate and support shared haemodialysis have been added into the competency framework. The handbook for patients and journal for staff provide tangible supports to change.

And what’s the impact?

• Nurses are now ‘care facilitators rather than care doers’ who negotiate with patients rather than dictate to them. They are becoming problem solvers – ‘it’s a move away from a conveyor belt system and it has increased staff satisfaction ... it doesn’t feel like groundhog day anymore’
• Listening has led to change. The Sheffield unit opens half-an-hour earlier and has changed from dialysis chairs to beds – patients said they are more comfortable. They’re also more cost effective.
• There is a lighter atmosphere, literally. The lights used to be off as people secluded into their corner; now the lights are on and people talk, share their experiences and support each other.
• The whole experience is now quicker – patients know how to deal with the alarms and don’t have to wait for a nurse or support worker to come and sort it out.
• And perhaps it’s safer – a patient calibrating their own machine or managing their own access will take great care because it affects them directly.

There are, of course, challenges:

• Patient as well as staff resistance, with patients concerned staff will lose their jobs (although it’s not about reducing staff numbers – staff find that they are working differently with their role enhanced as educator and facilitator)
• Accountability concerns – what if something goes wrong if a patient is self-dialysing on hospital premises?
• Releasing staff for training
• Financial constraints – button hole needles used in self-needling are three times the price of sharp needs and the tariff doesn’t allow for this.

The team is proving all of these challenges can be overcome.

The Health Foundation’s award is to the Yorkshire and Humber renal network, however apparently the network is being abolished. Martin Wilkie, programme director, said simply ‘If there had been no network there would have been no bid and no project.’

Does this matter? Well, let’s ask John (not his real name) – a 74 year old man with end stage renal failure. He’s been going into hospital three times a week for a number of years. He now shares his renal dialysis care. He makes his own observations. He has learnt to self-needle. He wants to learn how to programme the dialysis machine. ‘What difference has shared care made to you?’ I asked. He thought for a long moment and then said simply: ‘Everything about it is better.’

Adrian is an Assistant Director at the Health Foundation.