Thank you to everybody who took part in our recent kidney care in Scotland webinar. Once again Living Donation Scotland and Kidney Care UK were delighted to host the fourth and final webinar for 2021. The free webinar was held on Wednesday 1 December and hosted via Zoom.
This webinar focused on chronic kidney disease amongst children and young adults. The webinar was chaired by Jen Lumsdaine, Living Donation Scotland. Jen was joined by Ben Reynolds, Consultant Paediatric Nephrologist, Royal Hospital for Children, Glasgow, Lynne Cunningham & Liz Docherty, Kidney Care UK Advocacy Officers with a patient perspective from Hayleigh. Julie Glen, Living Donor Transplant Co-ordinator, and Zak Ahmed presented a young adult’s perspective and finally Holly Loughton, Peer supported with young adult kidney group.
Introduction - Paul Bristow, Chief Executive Kidney Care UK
Jen opened the webinar and introduced Paul Bristow, Chief Executive Kidney Care UK. Paul thanked everyone for joining and said he was proud to be joining the webinar focusing on children and young adults because the charity was formed by a mother and supporting young adults and children through kidney disease is part of Kidney Care UK’s heritage. Paul advised that this was the last webinar of 2021 from a series of webinars run in partnership with Kidney Care UK and Organ Donation Scotland. Paul reminded us that there has never been a greater need for webinars, especially within the last 18 months due to isolations and anxiety within communities and these webinars have been vital in connecting with people. Paul thanked the organisers and all speakers, especially thanking Jen and the Organ Donation Scotland team.
Kidney disease in childhood - Ben Reynolds
Dr Ben Reynolds is a consultant nephrologist based in Glasgow, he provided a brief overview of kidney disease in childhood and how they provide things in Scotland. Operating from a national centre in Glasgow, Dr Reynolds and his team deliver in centre haemodialysis to all children and young people.
They co-ordinate home dialysis, peritoneal and haemodialysis within Glasgow. They are the only centre in Scotland that provide a paediatric transplantation service and have recently successfully been commissioned by the Scottish Executive to provide complex in-patient care.
In Scotland, all consultant nephrologists are based in Glasgow, with wider MDT teams. Professionals are across the whole country with local MDT and Special Interest in Nephrology (SPIN) doctors Paediatricians. Out-patient clinics are run across local regions with specialist support available from Glasgow.
Kidney disease is not common amongst children, thankfully not a need for large services. In the UK, in 2019, 8 per million children under 16 started renal replacement therapy, dialysis or a transplant. And 65 children per every million under 16 had a transplant or were on dialysis in 2019.
However, many more, young people in the UK have CKD but at stages 1, 2, 3 or 4. Currently, in Scotland, 193 children are attending the Royal Hospital for Children Glasgow ‘chronic’ clinic with 61 active transplant patients who are under follow-up.
Types of Kidney Diseases in Children
Congenital or Structural causes - the most common cause of kidney disease in children are being born with it, can be isolated, or as part of a genetic condition. Or particularly in boys, damage to kidneys over time e.g., bad bladders/posterior urethral valves.
Nephrotic Syndrome - this happens due to steroid sensitivity, relapses, medication side effects. Most of these children maintain and go into adulthood with good kidney function.
Children who have steroid-resistant nephrotic syndrome, lose kidney function over time and the disease can come back. This is the reason many children go on dialysis.
Glomerulonephritides - these are IGA nephropathy, HSP, C3G, MPGN, Anti-GBM, ANCA, lupus etc., are diseases where the immune system attacks the kidneys and develop in children as they start to get older or reach early teens.
After an acute kidney injury of any cause - An increasingly common reason why children develop kidney failure where kidneys do not return to normal function. Some of the reasons for this can be following heart surgery and survivors of childhood cancer.
Challenges of kidney disease in childhood
Growth – Maintaining a nutritious diet to support healthy growth is difficult due to fluid restrictions.
Diet - Often the biggest challenge for families. Dietary restrictions, loss of appetite plus normal ‘picky’ eating is challenging particularly with children.
Medications – Often using medicines that are not licensed in children, because there is no alternative. The burden of tablets for children.
Education/Development – This is crucial, but dialysis is a time-consuming process that often requires hospital visits. Time off school with illness. Being tired. The cognitive and societal impact of renal disease.
A SPEAK study carried out by Alex Hamilton from Bristol looked at children and young adults aged between 6-24 and compared them to their peers. Those who had kidney disease as a child and now were transplanted or on dialysis were: ‘less likely to be in a relationship and have children’, ‘more likely to live in the family home, receive no income and be unable to work due to health, despite gaining the same levels of education as the general population’ and 'had worse wellbeing and were twice as likely to experience mental health problems’.
More challenges of kidney disease in children
Fatigue – This is hard to measure, but it can be significant. It impacts home, school, play.
Other conditions – Developing genetic syndromes and other diseases with side effects on the kidneys.
Teenagers - All the usual adolescent issues are complicated by kidney disease. Very high risk of losing the kidney graft after a transplant. This is because they are doing things normal young adults do, forgetting to take medication and lots of other things to focus on.
Children are robust. Children can bounce back quicker and have a better ability to cope. For transplantation, there are often 1 or 2 closely related donors available. Children have an advantage of younger age on the waiting list for deceased donor transplants. Thankfully significant kidney disease remains rare
The role of the Advocacy Officer and support available
Kidney Care UK Advocacy Officers are here for patients, carers and family members offering a range of services. They provide in-depth information, support and representation to patients, their families or carers, and local Kidney Patient Associations on a range of issues including:
- Access to Kidney Care UK patient support services, counselling, and financial grants
- Emotional health and living well
- Welfare, benefits, and housing
- Dialysis holidays
- Managing day-to-day life
- Patient choice and treatment options
Advocacy Officers have a range of knowledge and experiences, some are carers, patients or have worked in the NHS.
Some of the services young adults with kidney disease can get help with grants. This can help towards moving into a new flat, coming out of a relationship and going into a new home. You can get help with your driving licence to have some independence, or some help towards a new laptop, books, or safety equipment if you wish to start a new course. For children, help with new prams and car seats will also be of help. All grants are considered on its own merit.
For support with mental health, where possible we can attend a job interview with you or join via zoom. We also help with claiming Disability Living Allowance or PIP. We help from start to finish and can attend an assessment with you.
Hayleigh was diagnosed with IGA Nephropathy at the age of 12 developing onto kidney failure quickly. She was given details Kidney Care UK through a nurse at the hospital.
Hayleigh contacted Kidney Care UK for advice after having some trouble with her employer. She put on to Statutory Sick Pay and weren’t very helpful. Her employer offered her a redundancy because she could not go back to work straight away.
Hayleigh was put in touch with Liz Docherty, Advocacy Officer in Scotland who supported Hayleigh and advised her of the legislation. Liz also provided information on the grant.
This helped Hayleigh with her mortgage payments while she was off work. She has recently returned to work full time and if it wasn’t for Kidney Care UK, she would have been made redundant and without a job.
Young adult transplant perspective – Julie Glen and Zak Khan
Julie introduced Zak and asked him some questions about his journey with CKD.
When were you diagnosed with kidney disease and how did you feel?
I was diagnosed when I was still in school. I felt unwell and went to the hospital. After some bloods, I was told I had had kidney disease for two years. The following day I had a central line put in and was put onto dialysis the day after. It was all very fast.
Did you have enough time to process this information?
It was a big change, and I couldn’t understand what was happening. I knew nothing of kidney failure, and I was taking each day as it came.
How does this impact his school?
I have had to miss a lot of schools, especially at the beginning when I was diagnosed. It affected my education, but I have tried my best to get back on track.
When did someone speak to you about a transplant?
First, I started dialysis because it was a sudden change, once I was stabilised on dialysis then I was advised of having a transplant.
How did family members as donors come about?
My brother and dad were tested. I was told it would be difficult to get a kidney from someone else and the best option was my family. However, my brother and dad couldn’t proceed with transplantation.
That must’ve been quite emotional, did you speak to anyone?
It was a lot to deal with, but I am quite a private person, I would discuss everything with my mum. It was emotional for me and my family because I was young and it was hard to get used to that life.
You got a phone call, how did that happen?
I got the call during the night. Dr Reynolds told my mum, and I couldn’t believe it. I had to go to the hospital straight away and it was during the lockdown. I was worried as I didn’t want to get Covid-19. I was crying when I got the news and it was a second chance at my life.
How long were you in the hospital?
I was on dialysis for two and a half years, I was going to hospital three days per week. I did have home dialysis and it lasted for a few months. This is why I couldn’t go to school or socialise because of dialysis; it was like my second home.
How was your recovery?
It was ok, I was in the hospital for a month, but it was the happiest I’ve been in a hospital. I remember Dr Reynolds saying your taste buds will change and I noticed that straight away. I also felt more energetic.
What are you doing now that you couldn’t before?
It has changed my whole life, I appreciate everything, such as eating different types of foods, not going to the hospital as much, spending time with my family and I’m back at college now. I can play football and do boxing. I am living a happy life.
Young Adult Kidney Group - Holly Loughton
Holly, a kidney transplant recipient and is part of leading the Young Adult Kidney Group (YAKG). A patient-led peer support group from the ages of 18-30. Starting in 2016 with 30 members, YAKG has grown to 700 members worldwide, most based in the UK and have been running in partnership with Kidney Care UK for almost 2 years.
We are for patients only, we don’t allow family members, friends, or professionals to join closed Facebook group. This is important because we understand the value of being a ‘safe’ place for patients to not only join and make friends but to discuss things that may be sensitive, personal, or difficult to talk about with other patients who understand what it’s like to be a young person living with kidney disease.
Currently led by a group of 12 trained peer supporters, all of whom are kidney patients. Some are transplant recipients, dialysis patients and late-stage kidney disease patients who are not yet on any renal replacement therapy. We all recognise the value of having a community of kidney patients and use the knowledge and skills from each other to navigate our lives. Giving young patients the hope that they are not alone.
We work closely with Kidney Care UK to ensure members can access support and services they provide, such as advocacy officers, councillors, medical advice particularly in the last year with Covid-19 affecting our group.
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