Thank you to everybody who took part in our recent kidney care in Scotland webinar. It was the first of a series of events focusing on kidney care in Scotland and was hosted via Zoom on Thursday 11 March for World Kidney Day.
The webinar was chaired by Jen Lumsdaine from Living Donation Scotland and it was split into four parts with a question and answer section for each speaker.
First up was Kidney Care UK’s Deborah Duval discussing the Kidney Kitchen and how to follow a kidney-friendly diet. This was followed by Consultant Psychiatrist Dr Stephen Potts discussing mental health matters and Julie Glen, Living Donor Coordinator introducing Mark and Andy to discuss living donation. Finally we welcomed Mr Andrew Sutherland who replaced Mr Gabriel Oniscu, to provide an organ donation round up from the perspective of a Consultant Transplant Surgeon.
Jen Lumsdaine introduced the session and welcomed the audience and speakers. She invited everyone to listen to our speakers as they share their knowledge and answer questions about living well with kidney disease, kidney health and the changes to organ donation legislation taking place this year.
Deborah Duval introduced the Kidney Kitchen and shared her experience as a kidney patient, including the challenges she faced with diet information overload. Identifying a need, she approached Kidney Care UK and proposed the concept of the Kidney Kitchen. A vision for a central, trusted source of easy-to-follow diet-related advice and recipes which were ‘safe’ for kidney patients (and their family) to eat at the various stages of their journey through CKD.
She has gone on to work with Kidney Care UK to develop this resource in partnership with British Dietetic Association, renal nutrition group (RNG). A team of dietitians, professional chefs, food photographer and videographer were recruited and there is now over 80 recipes available. As the Kidney Kitchen continues to grow there are plans to work with renal units and dietitians more closely to raise awareness of the resource as well as continue to expand the range of recipes with more family favourites and cultural diversity. New resources are in development and the first recipe book will be coming soon in 2021.
Are there recipes suitable for vegans?
Deborah confirmed that there are a wide variety of vegan and vegetarian recipes available and the majority of recipes also come with recommended food swaps to make them suitable for vegan and vegetarian diets.
How do I find out which African foods are suitable when there isn’t much information about this in a traditional kidney-friendly diet?
Deborah confirmed that resources are being developed and made available particularly to improve the diversity of which foods are suitable for African, Caribbean and other previously less supported diets.
Mental Health Matters
Stephen Potts, Psychiatrist to Transplant and Renal Unit, in Edinburgh talked about the importance of mental health. He addressed the concerns going into pandemic about how hard this would impact kidney patients but highlighted how tough and resilient they have been during an incredibly difficult year of shielding.
Likening the role of a kidney patient to having to take on a 24/7, 365 days-a-year job, that they never signed up for, he talked through the common feelings of loss, depression and anxiety that many people experience. Stressing the need to remember that people become kidney patients, but they don’t stop being people and a focus on resilience, humour, goodwill and support helps them through a difficult time. Reminding us that whilst we are stronger than we think we are, most of the time, all of us have breaking points and that it’s ok. It’s human to be vulnerable.
Is mental health support available across Scotland?
Stephen recognised that it is expanding and growing and he always looking for ways to slowly improve access across Scotland.
How do you deal with a feeling of loss around kidney function?
Stephen responded that this is a common feeling as they experience a loss around failure of kidney function and he is advocating for raising awareness of this with his colleagues.
Julie Glen, Living Donor Coordinator introduced the audience to friends, Mark and Andy who shared their exceptional story. They provided perspective of both a recipient and donor journey. The discussed their emotional and physical experience and how the support they received helped them both.
Julie asked what they might say to anyone that is reluctant to discuss living donation. Mark encouraged others to not be afraid of asking the question and using the support of the coordinator.
How do I approach the subject of living donation with family and friends?
Julie recommended being honest and if you aren’t comfortable approaching it directly then sometimes by asking another family member to advocate for you or even just by sharing your story and what you need is often enough. Andy responded that hearing what Mark dealt with daily inspired him to want give and thinks if more people understood they would be more willing to help.
Organ donation round up
Mr Andrew Sutherland substituted for Mr Gabriel Oniscu who was called into surgery. As a Consultant Transplant Surgeon, he recognised the importance of hearing and sharing patient experience in a non-clinical setting and thanked the previous speakers for sharing their insights.
Recapping on the last year, he reflected on celebrating at the beginning of 2020 with Scotland achieving the most living donations they’d ever completed. It was however a stark contrast to the impact and potential risk that Covid brought to transplant and dialysis patients in particular.
Andrew highlighted the level of activity and how Covid impacted transplants taking place, particularly during March – August. He discussed the learnings from the early lockdown has meant that whilst numbers have gone down they were able to continue with transplants during this recent lockdown and also move to vaccinating the transplant waiting list as a priority.
The paired exchange programme was limited to only two runs in 2020 due to the logistical challenges and capacity of units during Covid. Looking in more detail at transplants that took place in Scotland, last year the number of living donor transplants was less than half of previous years. Positively, the number of deceased donor transplants has not been hit as hard. Looking ahead he said they are feeling much more confident and continuing to get the living donor programme back to capacity along with the deceased donor programme.
Discussing the Human Tissue (Authorisation) (Scotland) Act 2019, Andrew explained that the new system will come into effect on 26 March 2021. People will still be able to opt in and opt out of donation and no one is automatically entered onto the NHS Organ Donor Register. Awareness raising will let people know about the law change, what their choices are, and encourage them to make a decision, record it on the NHS Organ Donor Register and tell their family. Discussing the views of the potential donor are paramount but family will remain involved and will be key in communicating the views of the potential donor. The Act doesn’t provide for a family ‘override’ but as now, authorisation will not always result in donation.
Talking about transplant options, Andrew drew attention to living donor transplants being the best option and should be considered first as it can often be arranged prior to requiring dialysis and offers a higher survival rate at the 10-year mark. However, this does not dimmish the effectiveness of deceased donor transplant for those without access to living donation. Looking ahead at future technologies Andrew discussed some options we may see developed over the next 5-10 years.
Is the April matching run going ahead?
Andrew confirmed that whilst it is going ahead, not every unit is able to participate. Each unit will be making their own decision.
Is your time accrued from when you start dialysis or when you were added to the list?
If you are pre dialysis it is when you are put on the list. However, if you are on dialysis before you can be added to the list, then your time is back dated to when you first started dialysis.
Jen Lumsdaine thanked all attendees and supporters for attending the webinar. She confirmed we are hoping to run more of these events in the future and would welcome feedback on topics you would like to see discussed.
- Please keep checking the Kidney Care UK Covid-19 guidance for updates and further webinars
- Access to Kidney Kitchen recipes
- Please get in touch for general support, advocacy, counselling or grants
Thank you for joining us.
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