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Update on progress on the Home Dialysis (HD) Campaign in 2022
The National Kidney Federation (NKF) continued its campaign to increase Home Dialysis (HD) throughout 2022. The initial target was for all renal units to have 20% of their dialysis patients on HD. This ‘Two Years On’ report is based on all the hard work and information gathered by the NKF over the last year.
The ‘One year On’ report - page 18 - Building on Progress sets out twelve action points that were worked on during the year. https://www. kidney.org.uk/home-dialysiscampaign#Increasing_Home_ Dialysis_in_the_Context_of_ Covid_19_in_the_UK_One_Year_ On_March_2022_Report.These have largely been met or exceeded, as summarised below.
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The ‘One year On’ report was reported to local and national media outlets and a copy was sent to the UK Government and the devolved Legislations.
The NKF also shared the report with all Kidney Patient Associations (KPAs) and asked them to raise it with their Clinical Directors/leads (CDs). The NKF sent a copy of the report and a survey to all CDs and renal units to ask about HD in their areas. The 20% target is met or exceeded by some, but others are still struggling.
NKF representatives attend meetings for the Renal Service Transformation Programme (RSTP), with a representative on each of the five workstreams and Board.
The NKF is the Secretariat to the All Party Parliamentary Kidney Group (APPKG) and has a representative on Inter-CEPt and meet with the Kidney Quality Improvement Partnership (KQuIP). The HD campaign has been raised by the NKF as a priority for both the RSTP and the APPKG. Both groups have responded positively to this. On 9th June 2022, a talk was given by the NKF at UK Kidney Week, on ‘How can all centres reach the 20% dialysis target’. The session can be viewed here - https://youtu.be/9nzJlyfJhB4
Through NHS England, Regional Renal Networks were identified and each KPA associated within a region. An NKF representative attends each region’s renal network meetings, to ensure that the patient’s voice is heard, particularly regarding increasing home dialysis. An NKF representative has also been appointed for each of the regional areas to liaise with all the KPAs in each region.
The NKF Annual Patients’ Event in October 2022 was a major success with lots of attendees on the day https://www.kidney.org.uk/Event/ nkf-virtual-patients-event-2022
One of the speakers was a patient, who spoke of her experience of Home Haemodialysis (HHD) and Peritoneal Dialysis (PD). She is also a voluntary NKF Home Dialysis Peer Supporter and an advocate of HD.
Another speaker was a diabetic, who developed Chronic Kidney Disease and talked about her experience of PD. She previously spoke on this topic at the APPKG in May 2022.
The NKF has produced a series of short films on kidney disease, including addressing patients’ concerns on HD - https://www. kidney.org.uk/home-dialysis-films
NKF is also working on a production with ITN, once complete this will be shown on ‘ITV Player’ under the health section and will be ready in time for World Kidney Day on 9th March 2023; it will be played during the NKF Parliamentary Reception on 8th March 2023.
Since contacting all the renal units as part of their development plan, the NKF has seen an increase in leaflet orders and requests from units asking for other resources, such as information folders, patient support packs and patient cards.
The NKF has developed a good relationship with a Nephrologist, who is helping to keep the NKF information leaflets up-to-date and to include more guidance for patients on their concerns over HD.
The NKF Peer Support Service is going from strength to strength and has given support to many patients and carers. Further promotion is needed to keep the service growing. The Helpline and the Home Dialysis Sub Committee will work on further promoting the service in the renal units. The NKF Home Dialysis Peer Support Service is very valuable to all who have used it, the NKF will continue to increase the presence of this service throughout the UK, enabling people who are thinking of going onto home dialysis to speak to someone with lived experience.
The Helpline has had a very successful year and has helped many patients and carers, as well as providing resources to hospitals and dialysis units.
The NKF is campaigning to ensure that people who dialyse at home are reimbursed for their utility costs, the impact of which is made worse by the current cost-of-living crisis. The NKF have asked the Regional Renal Networks to advise what their procedures are for ensuring everyone who goes onto HD is informed about how to get reimbursement for their utility costs. They have also been asked about their backup procedures for patients if there is an HD machine failure at home.
PD is not yet written into the service specification for HD reimbursement of costs, but the NKF have been assured this will be included in the new service specifications. A survey on patients’ and Trusts’ HD reimbursement experiences has been circulated by the NKF, with over 100 responses received; the results have been passed to NHS England. The analysis of the final results of this will be published in this report.
Further work by the NKF on the HD Campaign continues in 2023 as detailed in this report.