“all children, young people and adults with chronic kidney disease are to have access to information that enables them, with their carers, to make informed decisions and encourages partnership in decision-making, with an agreed careplan that supports them in managing their condition to achieve the best possible quality of life”.
Mark Brady, our kidney CMO intern who is working with the team this year, showed the Renal Registry data for the North West.
As ever, the patient stories are one of the most powerful forces for better access to home therapies. Sandip Mitra (Consultant Renal Physician, CMFT, Manchester) recounted the struggle a 38 year old man with diabetes and renal failure had in fitting in with the hospital based haemodialysis regime. By 6 months he was becoming disruptive, confrontations with staff were occurring and he is now able to describe how resentful he was of having to spend 3 evenings a week in the dialysis unit after a full days work. Self needling wasn’t in fact the insurmountable barrier to home dialysis that it was initially thought to be. Psychological support and training tailored to his personal needs were required. Now that he’s at home, the renal unit staff feel the patient has been transformed, the family think they have got their real husband and father back. The patient is in control. Adhering to a rigid hospital regime, as much as the time commitment and the direct effects of 3 times weekly dialysis is difficult and the stress often plays out through personality and behaviour changes.
Even more powerful than clinicians recounting their anecdotes are patients who get up and tell their stories:
Stuart Segal (home haemodialysis patient, Liverpool)
spoke about how easy it was and how much better he feels on daily dialysis describing it as “a doddle”.
Jean (Stuart’s wife – an accountant not a clinician)
said “nobody told me I would be responsible. The whole of my life runs around 2 hours a day – well 3 hours with the set up and cleaning". "I can’t cope – but no-one is listening”. Jean quite rightly pointed out that it’s not fair for carers to be “hung out to dry” and emphasised the need for respite care.
Darrell Mortimer (home dialysis patient, Preston)
speaking eloquently about the benefits of tailoring his home haemodialysis to suit his particular needs, agreed that the strain and stress on the family was enormous and that not only regular respite care but some formal structured approach for carers is needed.
Costs, productivity and efficiency were discussed in detail. There are some real difficulties in getting accurate costs to compare home and hospital dialysis. In the national costings, transport hasn’t been included, reduction in drugs – erythropoeisis stimulating agents and phosphate binders hasn’t been considered and on the flip side, costs for carers isn’t captured. But, whichever way you cut it, home dialysis does cost less than hospital based treatment.
Nesta Hawker (NW Specialised Commissioning Manager) explained quality indicators, commissioning for quality and innovation and tariffs in a simple, but not simplistic, way so that all in the room could understand how the NW Commissioning Team are using these policy levers to drive up quality and drive down unacceptable variation. I was pleased to hear Nesta’s mechanism for avoiding unintended consequences – to speak to people, staff and patients and to examine data. One size does not fit all.
The workshop was the high point and a straw poll suggested that all 40 participants found the event useful. Local barriers and potential solutions were identified and explored but I am not going to steal the thunder of the NW home dialysis action plan. Getting the resource in the right place, having a patient centred culture, thinking about and involving carers in designing services and actively working towards shared decision making for all were some of the key themes.
There are some funds to support this – new money as well as savings from hospital dialysis costs. High quality care for kidney patients means home dialysis is a real option for those patients who make that choice.
Watch out for the NHS Kidney Care “improving choices for kidney patients: home dialysis” roadshow coming to a venue near you shortly so you can have your say and help shape the future of kidney service in your Kidney Care Network.