Fiona Loud @FionaCLoud
Fiona Loud is the Policy Director at Kidney Care UK (@KidneyCareUK), the leading kidney patient support charity in the United Kingdom. She is a kidney transplant recipient and a fierce patient advocate.
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Sometimes we make decisions on the spin of a coin: Which sandwich shall I have for lunch? Do I want a cup of tea? Those decisions are often affected by our mood, the weather, or how much sleep we had last night. In short, it may be quite random and based on a whim and we may not think about that decision ever again.
But how do we make decisions about our health? And what if that decision could have an impact on the rest of your life, or even how long you live? Where do you go to get information that helps you make the decision and to whom do you ask questions?
For those of us who experience kidney failure, we look to healthcare staff, but also to family, friends and peers….and the internet.
Many years ago, the National Institute of Health and Social Care Excellence produced some guidance that up to 15% of patients could be at home. However, in 2017, for all people on renal replacement therapy, we had just 5.4% on PD and 2% on HD. There is a conundrum, where evidence indicates clinical benefits but practice has barely shifted and is by all accounts falling back in PD. I would suggest using education and quality improvement together.
First, education. This is only one example, and I am sure you can think of other similar ones. From late 2016-2018, Kidney Care UK co-produced over 20 home therapies roadshows with hospitals and industry partners, starting with a successful pilot at 2 units. The concept was simple: camper vans with patient advocates carrying out HD or PD sat outside a dialysis unit for a day or two, with patients and their families invited to drop by.
Local staff leadership was key, especially from matrons, but it was a whole team affair with many staff, including those from the wards who would not often be exposed to home therapies being encouraged to visit the vans. Technicians came in, and porters too; they normally see poorly patients but those conversations the porter and the patient have in the lift about a brighter future can really help to reassure patients. Senior management came in, including the financial director at one hospital, local carer groups, and a Kidney Care UK advocacy officer.
Over the 2.5 years of the program, 500 patients came forward to go home on dialysis – a mix of new starters, people on hospital dialysis, or those who needed to change their therapies. Not all were able to go forward but many did. Some units still continue to do this work. There is an appetite for home dialysis but it is currently under-explored.
Sustained, simple, and collaborative interventions can be effective, and education for staff and patients is vital. If staff are not empowered or knowledgeable about home therapies, patients will not feel confident or even know to ask. This needs to change and that is where both public and private providers can do more and for local leadership and, possibly employment contracts, to support this.
It is important to note, though, if you mandate a specific number, it doesn’t seem to work and forcing patients to go home to fulfill a particular arbitrary number is not likely to increase numbers, but may cause distress. I would suggest there are other approaches, such as using that of SHARE-HD, through which patients and staff work together to take steps towards more self-care in units, starting with weight and temperature and building up to needling, lining, and priming. This has had some positive impact already and is likely to be sustained by both the NHS and other providers. It is also worth noting the encouraging results from the Kidney Quality Improvement approach (KQUP).
To break the barriers of helping people to have a meaningful choice on where to have dialysis, we need leadership, with consistent and continuing staff and patient education, supported by a quality improvement approach which enables local networks to create and sustain the environment for more equal choices to be given.
– Guest Post written by Fiona Loud @FionaCLoud
As with all content on the AJKD Blog, the opinions expressed are those of the author of each post, and are not necessarily shared or endorsed by the AJKD Blog, AJKD, the National Kidney Foundation, Elsevier, or any other entity unless explicitly stated.