journey02

A Physician's Perspective on Jonkoping Self Care Unit

York Nephrologist's Report on Jonkoping Self Care Haemodialysis Unit Visit, October 2011 

Setting

Jonkoping county has 3 hospitals and the Ryhov dialysis unit serves a population of 140,000. This site previously housed a Swedish army garrison and then the county's Psychiatric Hospital. The nephrology service was commissioned in 1986. It is currently staffed by 2.5 Consultant grade and one Registrar grade nephrologists and care for 21 PD pts, 39 HD (14 on self care, 1 on HHD), 82 RTx and 75 CKD patients. There is a strong focus on starting dialysis careers on PD and dialysis independence on haemodialysis, which is introduced from the low clearance clinic setting. The dialysis service is funded by a block contract from the local council. Haemodialysis treatment is costed at £340/session. The costing includes transport and expensive drugs, which is not part of UK dialysis tariff. Self care on HD started in 2005 due to persistence of one dialysis patient who was determined to provide his own dialysis treatment. Other patients soon followed his enthusiastic lead and numbers of self caring patients increased. Patients and staff successfully campaigned for a purpose built self care unit as an alternative strategy to expanding the existing HD capacity. A Self Care HD unit ('The Pavilion') was designed following consultation with patients. The patients elected for a medical model rather than a home environment. HD space had wider chairs or beds, Nikiso machines with side arms (after trialling a number of manufacturers), bed side cabinets for emergency supplies, access to entertainment (TV (but no WiFi)). The unit was constructed by a non hospital agency and cost approx £500000 (not including the water plant and dialysis machines). The unit was officially opened by the Crown Prince of Sweden, who himself has a renal transplant and received haemodialysis previously. Since the units development many patients have preferred to continue to dialyse in the hospital rather than consider home therapy. Those that do use the Kimal NXstage machine. 

Dialysis Area and Schedule

The Self Care Unit is attached to assisted HD unit but has a separate entrance allowing self care patient's unlimited access to the unit. Entrance leads to a common area used by patients and staff. Patients make their own booking and usually have access to the treatment slot that they want. The majority of self care patients dialyse more than three times a week. Most of the 14 patients (12 machines) dialyse in the morning, from 0500hrs. Staff are present in the area between 0700hrs and 1600hrs. Patients pick up consumables from the dialysis unit's store, fill a form which lists machine details, consumables used, dialysis treatment details and observations. The staff are present but don't intervene until patients request for help. Staff are available if needed. Only one Self Care patient is currently in full time employment and the unit is starting a process to help patients write a CV, and based on their independence and skills gained on dialysis.Enter your text here ...

Self care ethos 'learning together'

Nursing staff teach patients to dialyse using a standardised and uniform process but allow patients some flexibility to develop a safe technique. A non critical environment exists where minor mistakes are tolerated as a learning event. Nurses have certain rules which they expect patients to follow, and a formal contract exists between patients and unit. The unit is not keen to have a structured learning course or formal assessments of competencies for staff or patients. Learning is focused on a partnership between patients and nurses based on mutual respect in a non critical environment leading to close friendships between staff, patients and their families.

Patient feedback

  • Willing participants in a patient led model.
  • During training, setting up the machine was thought to be more difficult compared to needling access.
  • Self care resulted in increased motivation and a desire to do more dialysis, with physical benefits felt by the patients.
  • Majority of the patients dialyse early in the day. Some patients start to set up machines and then exercise in the adjacent gym for 30 minutes.
  • Patients are happy to teach others dialysis techniques and help problem solve. Nurses are comfortable to allow patients to learn from their peers (but standing back to allow this initially difficult!).

Doctors feedback

  • Although the medics were late adopters to the patient-nurse led development, they feel that it has significantly improved care of their patients and support it fully.
  • They don't feel that this programme hinders the development of their HHD programme, but that patient choice is often to continue with self care dialysis on the unit.

Other units in Sweden are looking at developing similar units, including one with a large HHD cohort in Lund. Currently the most similar unit is running in Copenhagen, Denmark. The renal team are working with Qulturum and IHI to develop specific quality indicators.

  1. Factors that have enabled this development in Jonkoping include the open and permissive environment which has allowed the traditional boundaries between patients and staff to be broken down. The dialysis team and renal unit has got the support of medical staff, nursing hierarchy, hospital management, commissioners, politicians and Swedish Royalty!
  2. 14/39 patients self care (oldest 83 years) and all appear to be fully independent. Patients peer support has played a vital role in the sustainability of the programme over the last 5 years.
  3. The informal structure (of training & assessments) coupled with a non-critical atmosphere is the key to this development. We think one of the reasons why there has been limited interest in the other hospitals in the country is probably because there isn't a transferable 'packaged' model to deliver training.
  4. In the past, the self care unit was within the "assisted" HD area. But with the opening of 'the pavilion' the units have been separated. We think they have made the right move by separating the physical space and teams looking after the two groups of patients with different needs.
  5. A pictorial manual is used to assist learning can be adapted for use in the Y&H shared care program. The pictures could also be used in a software based self assessment of competencies achieved by patients.
  6. The Jonkoping model of care delivery might appear to be more expensive compared to UK standards. Part of this is due to the generous ratio of patients to staff and machines. The staff are convinced that this model offers value for their patients and are working with Mark Splaine to construct quality measures that will be relevant to staff and patients.
  7. Development of measures and collaboration between units in Jonkoping and York will assist our learning and make data more meaningful. The York renal unit has ready access to QI experts – Donald Richardson & Darren Fletcher.
  8. A patient and nurse exchange programme between the two units seems a very real potential between the two units. We plan to have the first exchange planned by Oct 2012.
  9. Our shared care developments are in their infancy but this visit to Jonkoping has reassured us that we are in the right track.
  10. Finally, we are proud of some of the processes we have in place in York which will assist with this programme. We have a culture of active patient involvement in 'have your say meetings', local resources for quality improvement work and staff committed to empower patients to take control and ownership of their care.