NOTE: This article was first published in February 2020 in Issue 8 of our Kidney Matters magazine
The number of people in the UK with diabetes is increasing year on year and is expected to reach 5 million by 2025. A significant number of these people will go on to develop damage to their kidneys, leading to chronic kidney disease (CKD), and a smaller number will go on to develop end-stage kidney failure requiring either a kidney transplant or dialysis.
Whilst this percentage is small, the fact that there are such a large number of people with diabetes starting this journey means that the numbers are by no means insignificant and indeed are growing every year. In 2017, people with diabetes accounted for 28% of those needing renal replacement therapy in the UK. This percentage rises in areas with a high concentration of Black, Asian and Ethnic Minority (BAME) patients to 40%-50% of their haemodialysis (HD) population with diabetes.
Once a person with diabetes starts kidney failure treatment, they are already in a vulnerable position and often have associated cardiovascular problems (history of heart attacks and strokes) and an increased risk of these complications over time. They also have a significantly increased risk of foot problems such as ulcers, with a small proportion requiring amputations as a result of these complications. Whilst on HD, these individuals still require considerable care that is focused on their diabetes needs, in addition to the needs that are determined by their HD schedule. Reports, audits and experience have demonstrated that many of these individuals do not receive the level of care that they require and the management of their diabetes is poor, putting them at greater risk of complications.
Diabetes care in haemodialysis (DiH)
In 2016 the Joint British Diabetes Societies, in conjunction with the Renal Association, produced a comprehensive guide describing best practice for the management of people with diabetes on HD. This rather lengthy publication is unique as it is the only document in existence that has focused on the diabetes care of kidney patients on HD. The document contains a large number of recommendations and is educational and informative for the healthcare community caring for people with diabetes.
Unfortunately, whilst this may be a very worthy document, there is no evidence that it has facilitated improvements in care for people with diabetes and audits suggest that care continues to fall below the standards recommended within the report. So in 2018 a group was formed under the umbrella of a number of renal and diabetes organisations to develop a programmme that would support the conversion of these guidelines into real and meaningful changes in practice for people with diabetes on haemodialysis. The initiative is called the diabetes care in haemodialysis (DiH) programme and has made significant progress in the last year. It is, however, going to take more time for people on the ground to really see the benefits of this programmme.
What are the key aims of the DiH programme?
Firstly, improvements in the organisation of care for people with diabetes. Kidney patients with diabetes on HD usually attend (unit based) dialysis sessions three times a week and often do not have time to attend their diabetes appointments, whether they are undertaken at the general practice, in the community or as an outpatient in their hospital. This is compounded by the fact that there is often confusion about who is actually managing the diabetes and everyone assumes it is being undertaken elsewhere, resulting in many people falling through a hole in the system.
Secondly, there needs to be much more education of all those involved in the care of people with diabetes on HD in relation to managing their glucose control more safely. There are very specific issues around both treatment targets and how glycaemia is monitored in people with diabetes on HD, compared to those with normal kidney function. People with diabetes (as well as the HD staff) often don’t appreciate that, although for many years they have been requested to improve their sugar control down to near normal levels, once on HD there needs to be a more liberal attitude, because of the greater risks of low blood sugar when a person with diabetes is on HD.
Changes are possible and there is an increasing recognition of the need to better support patients with diabetes on haemodialysis
Thirdly, there has been a gap in relation to education and training around diet, and people with diabetes on HD are often confused about the restrictions required of them for their diabetes. They may see two different dietitians who give them advice that is uncoordinated, causing them confusion or restriction of their diet that is much too great. A coordinated dietetic approach is required so that clear and safe advice can be given to people with diabetes on HD.
Finally, good foot care is paramount for improving the quality of life of people with diabetes on HD and we have to accept that haemodialysis units and staff need to take some ownership of this, given that they see this particular group of patients three times a week. All units should be working with the patients they care for on the unit with diabetes, to ensure that there are regular foot inspections and that there is a clear and easy pathway to a rapid-access foot clinic should any problems occur.
In order to make the changes necessary to achieve these aims a set of standards have been agreed which all HD units will need to be measured against. It is likely if you are on haemodialysis with diabetes that at some point in the next year you will be involved in this audit, so that we can monitor the care that is provided to you and your current understanding of diabetes.
Changes are possible and there is an increasing recognition of the need to better support patients with diabetes on HD, and indeed you can read about an excellent example of this in this edition by Dr Ian Wallace describing the work being undertaken at Belfast City Hospital (see page 10). This is one of the many examples of good practice being implemented around the country.
In addition to developing standards, an education programme has been developed for all healthcare staff who work with people with diabetes, both a face-to-face programme and an electronic learning program. By undertaking education and training of staff and regular audit we hope to highlight areas of good practice and spread this across the system. It will take time for a full roll out of this programme but we anticipate care will improve.
A further key aim of this programme is to empower and involve you, in relation to your care. We are currently undertaking focus groups involving people with diabetes on HD to develop a charter of care that is easily understood, informs you of what good care would look like, what you should expect from your dialysis unit in the delivery of your care, and how you can improve your self-care.
If you have diabetes and are currently dialysing on a unit we would be very grateful for your input. Please see our draft ‘patient charter’ on page 7 where we are asking for your comments and suggestions. It is really time that we raise the profile of kidney patients with diabetes on haemodialysis and we genuinely hope that the DiH programme will facilitate this.
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