Thank you to everybody who took part in our recent Kidney care in a Multicultural Scotland webinar. It was the third of a series of events focusing on kidney care in Scotland and was hosted via Zoom on Thursday 2 September.
The webinar was chaired by Consultant Nephrologist Samira Bell from Ninewells Hospital, Dundee. The webinar was split with three speakers and then a question and answer section at the end, which had questions for all speakers and also included another 2 panelists.
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 Bushra Riaz the Scottish Peer Educator at Kidney Research UK who discussed perceived barriers and promoting organ donation in a multicultural society. Our final speaker was Surgeon Zubir Ahmed who works for Greater Glasgow and Clyde talking about increasing transplant opportunities in a multicultural society.
Jen Lumsdaine - Introduction
Jen Lumsdaine opened proceedings and introduced Samira Bell as the chair. She asked that the audience type in any questions they had and explained that there had already been several questions asked at sign up.
Samira Bell - Chair
Samira Bell was appointed as a Consultant Nephrologist in Ninewells Hospital, Dundee in 2010 after carrying out both her undergraduate and postgraduate training in Glasgow. She was appointed in 2019 as a Senior Clinical Lecturer in the Division of Population Health and Genomics at the University of Dundee where her main research interest is renal epidemiology. She is currently chair of the Scottish Renal Registry.
Samira thanked Jen for her introduction and ran through the plan for the evening which was the three speakers and their topics. She reiterated that there had been questions already submitted but we would try and get through as many as possible at the end of the presentations in the question and answer session.
Samira introduced the first speaker.
Deborah Duval - Kidney Kitchen
Deborah is Kidney Care UK’s Managing Editor and Lead in the Kidney Kitchen project. She has lived with chronic kidney disease for over 35 years and has received four transplants – a simultaneous pancreas and kidney (SPK), a second kidney and a second pancreas. It was her struggle in the early years of her diagnosis, to come up with whole meals based on the lists of foods she was no longer supposed to eat, that drove her to start the Kidney Kitchen project. Bringing together the skills of professional chefs who understand food and how to work with different flavours with a team of experienced renal dietitians, the Kidney Kitchen has now created over 100 exciting and tasty kidney-friendly meals – including a growing number of dishes with culturally diverse influences – for the whole family to enjoy. On the back of this success, the first Kidney Kitchen recipe book is about to be launched.
Deborah Duval introduced herself and thanked everyone for the opportunity to speak about the Kidney Kitchen. She 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. Her vision was 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 are 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.
By the end of this month, she stated that our first recipe book will have gone out to every single dietician in the UK, which is important as not everyone is online and some people simply prefer to have the recipe in their hand. She advised you all to ask your dietician about it.
Deborah asked who had put on weight in lockdown and put her own hand up. Our Kidney Kitchen is here to help with those extra lbs put on in lockdown and there are hints and tips with each recipe to reduce fat or calorific value. Why do we want to lose weight? You may not be listed for a transplant if you are significantly overweight. That said, it is acknowledged how difficult it can be to lose weight when on dialysis and even harder if you are also diabetic. Our recipes can be used as part of a plan. They can also be used if someone needs to put on weight and there are similar tips included for those who may need to gain a few lbs.
Deborah went to say that Kidney Kitchen is concentrating on world flavours at the moment, so we should expect to see Caribbean, North African and Malaysian flavours with our Kidney Kitchen guest chefs.
Deborah urged those watching to “get in touch” with us here at Kidney Kitchen and that while we have received some impossible recipes to try and make kidney friendly suggestions are always welcome!
The chair thanked Deborah for her talk and reminded people that questions for Deborah would be at the end of the speakers and went on to introduce the next speaker
Bushra Riaz - Perceived barriers to donation in a multicultural Scotland
Bushra joined Kidney Research UK 5 years ago. She is the Scottish Peer Educator coordinator for Kidney Research UK’s organ donation project. She is a graduate in Management and Maths and holds an MSc Marketing. Having worked fulltime within the Marketing field for several years, she took some time out after her 3rd child. She initially became a valued volunteer in Glasgow for our Charity then was recruited coordinator of the project in Glasgow and Edinburgh.
Bushra opened her talk with a slide about the common barriers within the south Asian communities mentioning attitudes and beliefs, myths and misconceptions, learned behaviour, cultural issues, lack of education and awareness, faith issues, gender barriers, impact on family and mistrust of the NHS.
Bushra stated that while social media can give out a lot of good information on these topics which is really helpful and informative, it can also put out misinformation that can spread widely within the hour.
Bushra talked about the Peer Educator Project which is ongoing at present and was started when the Scottish Government approached Kidney Research. Bushra informed that this had been ongoing for 8 years now using volunteers and seeks to raise awareness within the South Asian, Hindu, Sikh and Muslim communities about kidney disease and organ donation. It also supports the opt out change in the law that happened in March 2021.
Bushra stated that the project had now engaged with over 7000 people and had initiated over 1100 sign ups to the NHS organ donor register. The project is award winning and seen as one of the most successful projects in the UK.
Bushra spoke about a Scotland Muslim Imams Event held in July 2019 pre Covid-19. The event meant that information was shared and could be taken back to communities and would allow for discussion to take place around religion and donation.
Bushra gave details of two case studies from Glasgow regarding two patients who received live donor transplants from families. Both patients were doing well.
Bushra asked the question 'why approach your family to become a living donor', answering this with the presentation of the fact that you are most likely to receive a successful match in blood and tissue type from someone who is the same ethnic background as yourself. She also stated that there were no religious barriers to living donation and that in fact all religions see state it is a form of charity and what better way to give to others. Living donation is the best help you can give.
Samira thanked Bushra and went on to introduce the final speaker
Dr Zubir Ahmed - Increasing transplant opportunities in a multicultural Scotland
Zubir is currently a Consultant General vascular and transplant Surgeon for Greater Glasgow and Clyde. He trained in Glasgow, London and Calgary Canada. His research Interests are in living donor nephrectomy and health management.
Zubir stated that he was very optimistic especially within the last 5 years within the communities that Bushra had mentioned where there was once denial he has seen people take a journey to where he now sees tacit acceptance and some promotion and engagement with the process whereas before there was none. He said this was refreshing to see.
He stated that it was important that we take care not to pigeon hole anyone and make assumptions about their opinions on transplantation because of their background. He stated that the stereotype of someone being totally against transplantation isn’t around anymore and people are becoming much more open to the idea and that things were rapidly changing in no small part to information events such as this and the Peer Educator Project.
He stated that living donation is the most prominent modality at the moment in terms of ethnic minorities but there can still be fear around the long term impact of these donations. This is where the data we collect comes in to reassure us, as everything collected is positive towards the donor living a healthy life and, for example, going on to have a child or being able father a child. As more donors come forward the more data we collect to support our findings.
Living donation can transcend barriers and we are now able to transplant people with different blood groups. Dr Ahmed talked about why people often thought they would be unable to donate but that everyone should consider themselves able. Age is not always a barrier, which is true for life donation or deceased donor.
He further talked about new technology coming to the fore that may allow us in the future to transplant kidneys that previously we would have rejected.
Dr Ahmed then spoke about the law change which he believed was a positive step and that people who worried about it should not worry, as it in no way stopped your next of kin from representing you at your death. It's what was called a soft opt out which allows us to assume that someone is donating until the point that someone says they are not donating. He said that the conversations this change had facilitated within families were very valuable.
He spoke about a leaflet he had helped produce for the Muslim community on this topic that was there to reassure people and to be used a portal for discussion. He added that when the rates of donation do go up it will be because more people have become comfortable with having these discussions.
The take home message for those are part of mainstream Scottish society: don’t assume that someone may have a conflicted or hostile view to transplantation or donation because of their ethnicity and for those who may be potential donors from an ethnic community there is a heterogeneity of opinion that nobody is going to make you do anything you are uncomfortable with in life or death. There is a lot of opinion now that actively supports donation especially within Islam.
The chair, Samira Bell, then went on to host a question and answer session using some questions asked at sign up and some posted that evening.
Q: What are the panel’s views on living donors who donate later in life?
A: Dr Ahmed
Stated that older doners do well in the immediate post-operative period, the midterm (first year) and the longer term. They are no worse off than younger counterparts in any of the three timelines and there is evidence that some do better. Age is not a barrier to donation he said, and that sometimes surgeons and nephrologists will worry less about an older person of 50/60/70yrs than that of a younger person who has more of their life to live on only one kidney. He said that the oldest person he had operated on was 83 years as a donor.
Q: What are the main barriers to assessing overseas donors?
A: Dr Ahmed
Said he had limited experience from London but usually barriers are more to do with the home office and border force. From a clinician perspective, he was more than happy to facilitate and try to support this process by way of letter etc. The person abroad would have to undergo the same assessment process as would be required for the UK. In the vast majority of cases, he found impediments to people donating from abroad were few and if they fulfilled clinical criteria there were no issues.
A: Jen Lumsdaine
Jen stated that they have many years experience working with countries around the world and will try to establish at least baseline tests because they do not want to bring people across the world if they are not going to be suitable. Communication with clinicians happens around the world and travel arrangements are supported. Jen further stated that most importantly the person travelling to donate must as in the UK fulfil the Human Tissue Authority requirements and show evidence of a relationship either of family or friend. There are barriers but they can be overcome where possible.
Q: Will the NHS support UK residents in pre-op assessment tests to be a kidney donor for a relative in another country?
A: Dr Ahmed
Said he didn’t know the specifics of this but couldn’t imagine why the NHS wouldn’t support this. He was not aware of funding arrangements.
A: Jen Lumsdaine
Said that very often in the UK someone has a sibling in another town and the NHS are very used to working with other units around the country and that extends to overseas countries. While the other country involved would need to pay the expense of the patient travelling, the NHS would happily do all the tests involved to make sure the person was fit to donate as people would do for us.
Q: How do you raise the question of Living Donation and how does it feel to have family or friends donate?
Said that she was very lucky because her brother offered to donate to her straight away and so she didn’t need to have the conversation and that other family members also offered. She said that others weren’t against donation, it was just about not knowing the process and what her brother would be like after transplant. These questions were raised with the surgeon and confirmed her belief as Bushra said in her talk earlier that education is empowerment.
With regard to how she felt about the organ donation, Sumaya said she felt she owed that time in her life to her brother which allowed her to live, to travel, get married and develop her career and she felt that all benefit went to him.
Said it can be difficult but if they see their loved one unwell, they want to help. It can be the fear factor of being rejected that makes patients not ask but having a peer person in the community with knowledge can be helpful. Communication and raising awareness and using case studies will help over come a lot of the barriers.
Q: I am male – I don’t follow recipes too well unless it’s a video showing you all the ingredients – is their any plans for that?
Said that was what Kidney Kitchen was all about. It was about one/two thirds split between video and photos of prep. All aspects of the preparation are talked about. About 30% of recipes are video and the others are photos. Coming up soon online are some kitchen skill videos, ie chopping an onion/boiling potatoes. Patients/carers can find themselves having to cook when they never have before and we will teach you. Simple 30 second videos that will expand over time.
Q: Any alternatives for fake chips as potatoes have too much potassium, apart from white turnip?
Recommended still using potatoes but using the Kidney Kitchen recipe and not having as many, because a chip is a chip. If you use other vegetables you will always compare them with a chip. Nothing is out of bounds in the Kidney Kitchen but what we’ve done is kept them within certain parameters along with dieticians so that they can still be called a low potassium dish.
Q: My little boy is three, do you have any child friendly recipes?
Deborah said this was a place she wanted to go with the Kidney Kitchen and for things to be as accessible as possible. She suggested the recipe for lemonade scones as a good thing to make with only 3 ingredients but to speak to the dietician about any modifications to current recipes for a younger child and that this was on the agenda for the future.
Our recipe book will be going out to all dieticians. All at present are free of charge and ideally we want it to remain free. It is not currently something that can be bought on Amazon and needs to be accessed through the dietician.
Q: Is there any development of a better vaccine for patients who have had a kidney transplant?
Samira answered that she was not aware of a better vaccine but that there was evidence that a third dose would be beneficial to those transplanted and the wider dialysis population. The JCVI have said they will be offering this third dose to those who are immunosuppressed. You can find more information on the third dose in the Coronavirus section on our website and this is updated several times a week.
Q: Why is it hard for Asians to get a transplant?
If talking about a deceased donation, we are a very small minority in the UK but we have a large amount of people waiting for a transplant and people do not sign up to become a deceased donor. Tissue and blood types need to match and if people are not signed up to donate then patients need to wait longer (at least a year). Bushra again sighted lack of knowledge and awareness and an 'it doesn’t affect us attitude'. Lots of work going on now with all the faith leaders around this - leaflets for all the major faiths have been produced. No faith states that you cannot become an organ donor.
A: Dr Ahmed
Stated that yes it was harder but he still thought we had one of the best if not the best transplant schemes in the world. He also thought it was getting easier and that we needed to work on people not being reticent to put themselves on the deceased donor list.
Half of kidney transplants carried out in the UK are living donor so there is an element of control there if family members do wish to come forward.
If someone wants to donate but isn’t a match to you – 4 times a year they carry out a matching system to try and find people a match and there are ways round it if the person offering you a kidney is not a match for you.
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