Tag: Kidney Care UK

One in 4 people are unaware of main signs of disease set to be fifth biggest global killer

New data released today by the UK’s leading kidney patient support charity, highlights an alarming lack of knowledge of the main signs of chronic kidney disease (CKD), with 1 in 4 (29%) unable to identify the seven main signs of a loss of kidney function – compared to a UK average of 27%.

In response, charity Kidney Care UK is urging people to take their five minute online Kidney Health Checker to understand their level of risk and take action to prolong their kidney health as part of their #BloodyAmazingKidneys campaign.

The campaign has the backing of 51-year old Lois Denham, a kidney transplant recipient from Paisley:  “Most of us probably haven’t really heard of Chronic kidney disease but I had symptoms – I was exhausted, and I mean really exhausted, not just tired, but constantly.

“Along with this I also had brain fog. Before I had my transplant I was vomiting up to four times a day including through the night. It was horrendous.  However, I continued to work almost full time right up to the day before my transplant.  But it wasn’t until I had my transplant in January 2023 that I realised just how awful it had been before that. I had just got used to it, it had been so long.” 

“Now, thanks to the most wonderful and precious gift from the most incredible person, Josh, I now not only more energy, but I’m also well.  I’m able to do and experience so much more. I actually get to live a full and happy life thanks to the selfless generosity of my big hearted friend.  I will forever be grateful to him.

“But the point is, that I didn’t know I was at such risk, or how kidney disease could develop itself, what the repercussions would be not just to me health wise but on my family, on my ability to just do everyday things.  

“I have polycystic kidneys and I was being monitored. So if you have risk factors like high blood pressure or diabetes or an underlying kidney condition then please, take it seriously. Get yourself checked out and take the advice that doctors give you so you can try and live a healthier, fuller life for longer.  

“Like the campaign says, your kidneys are amazing – but you could be losing kidney function without even knowing.”  

The most common signs of CKD are: cramps, itchy skin, dietary changes (food tasting different to how it does normally), nausea and/or vomiting, exhaustion, changes to your wee and swelling of your ankles/legs or face.

Our research also showed that:

  • Just over a third of people (36%) do not recognise that changes to your wee can be linked to kidney disease.
  • Around three quarters (73%) do not realise that itchy skin is a sign of kidney disease.
  • Three quarters (76%) do not realise that muscle cramps are a sign that your kidneys may not be working properly.
  • Over half (64%) of people in Scotland do not know that puffy face, or swollen ankles/legs is a sign.
  • Only 47% of people recognise that exhaustion is a sign.

CKD currently affects 1 in 10 people – equivalent to more than 7 million people in the UK – but 1 million of those are not even aware they have CKD. 

Diabetes and high blood pressure are the two leading causes, but more than 70% of people with high blood pressure do not have an annual urine test for CKD; furthermore  45% of people with Type 1 diabetes and 32% of people with Type 2 diabetes do not have their annual urine test for CKD. Unless urgent preventative action is taken to improve diagnosis and treatment rates, CKD is predicted to be the fifth leading cause of death globally by 2040..

Fiona Loud, Director of Policy at Kidney Care UK, said: “We want to see at risk groups in Scotland screened for CKD as early as possible. Delay in the diagnosis of moderate to advanced CKD by just one year results in a 63% higher likelihood of kidney failure requiring costly and burdensome treatment to stay alive, such as dialysis or a transplant.

“This also has a significant effect on people’s mental health and on their ability to work.  Whether people are identified early or late, there will always be a cost to the NHS; but by identifying people sooner more can be done to prolong their kidney health, improve their quality of life and reduce the impact on health and other services.”

Whilst age-based screening is offered for people aged 40 to 75 via the NHS Health Check, only half of all people invited for the NHS Health Check take up the offer. Innovations such as the new digital health check programme may make it easier for people to engage with their health. However, it’s important to note that people with pre-existing conditions such as diabetes aren’t included in the health check programme.

Laurie Cuthbert, Director of Fundraising, Marketing and Communications at Kidney Care UK, added: “We are concerned that a lack of symptom awareness amongst the general public in Scotland, combined with a fear of not wanting to burden their GP, means that some are at risk of losing as much as 90% of their kidney function without realising or taking simple steps to look after their kidney health.

“We hope that our #BloodyAmazingKidneys campaign will help raise awareness of the Bloody Amazing role they play. By empowering individuals to take control of their kidney health, we want to ensure that more people are diagnosed sooner and ultimately never reach kidney failure.”

Take 5 minutes to protect your kidneys today: 

www.kidneycareuk.org/KidneyHealthChecker

SGN & Kidney Care UK partnership to provide support to thousands of people with kidney disease

SGN is leading a new £2.5 million partnership with Kidney Care UK which will see them work with the UK’s gas distribution networks (GDNs)1 to offer specialist support to help nearly 18,000 people living with kidney failure across the UK – 1,250 of those in Scotland.

Currently in Scotland there are 1,250 people with advanced kidney disease who rely on dialysis to stay alive. The majority of these patients have a routine which consists of three to four sessions of dialysis a week, each taking up to 6 hours or more in hospital.

On top of this they have to manage the associated stress and time pressures of travel to and from treatment. Due to the time constraints and health impacts associated with treatment for patients with chronic kidney disease (CKD), only 26% of people on dialysis are in full time employment2. The consequent low income means many people with kidney failure live in relative poverty, compounded by the misery of increasing costs of living.

The unique and transformational partnership, uniting statutory, charitable and corporate sectors, will support vulnerable customers most in need, providing people living with CKD, with vital support to help tackle fuel poverty.

The initial two-year project will provide a holistic suite of services, including face-to-face support, where customers will get assistance with benefit entitlement, welfare support and specialist money and energy advice.

The service will maximise outcomes, in terms of financial support, whilst also promoting energy and carbon monoxide awareness.

The expansion of Kidney Care UK’s patient support services will mean that people on dialysis will have access to a dedicated, personal, face-to-face support service.

This will serve the 1,250 kidney patients on dialysis treatment in the 26 units across Scotland, as well as supporting people in the North East, North West, the South West and South East of England. Delivered by trained and trusted Patient Support & Advocacy Officers, the service will enable patients to access all the benefits and welfare support they are entitled to.

Laurie Cuthbert, Director of Fundraising, Marketing and Communications at Kidney Care UK, said: “We are pleased to be working with SGN as part of a transformational partnership with the Gas Distribution Networks across the UK to support nearly 18,000 vulnerable kidney patients in need of immediate support; 1,250 of these in Scotland.

“Philanthropic investment from our partners is enabling Kidney Care UK to increase its direct, on the ground support to thousands of dialysis patients, delivering tangible welfare and wellbeing benefits at a time when it is more important than ever”.

Linda Spence, Vulnerability Manager at SGN, said: “We’re committed to keeping our communities safe and warm and we know people with health conditions are uniquely impacted by higher than average energy costs.

“By working in a joined-up way with Kidney Care UK, we’re able to reach those who are really struggling and provide much needed energy advice. Through building strong connections we can help vulnerable households get much needed help.”

For more information about Kidney Care UK’s patient support services go to https://kidneycareuk.org/get-support/

Reality of kidney disease highlighted by transplant recipients for World Kidney Day

Two kidney transplant recipients have spoken about the reality of living with kidney disease ahead of World Kidney Day (Thursday 11 March 2021).

Fiona Davies, 39, from Airdrie, and Ross Young, 48, from East Calder, both diagnosed with Polycystic Kidney Disease (PKD), have shared their gratitude for the transplants that have given them their lives back, and the chance to see their children grow up.

Fiona and Ross have backed the campaign to raise awareness of the forthcoming organ and tissue opt out law, in the hope that it will get people thinking about their donation decision.

There are currently around 420 people in Scotland waiting on a kidney transplant, many of whom are on dialysis to keep their kidneys working. 

Ross was diagnosed with PKD in 2003, and has since found that his two sons, now 13 and 16, have the same hereditary condition.  His kidney function deteriorated to the point that he was listed for transplant in March 2010, and received his transplant in November 2010 after only ten weeks on dialysis.

Fiona was diagnosed with PKD as a teenager, which she successfully managed until the birth of her son James in 2012 impacted on her kidney function.  She reached end stage kidney failure in October 2016, and was listed for transplant in March 2017. Her transplant went ahead just three weeks after she was put on the waiting list.

Scotland’s opt out law, which will be introduced on 26 March, means that if people aged 16 and over haven’t recorded a decision about donation, they will be considered a possible donor if they die in circumstances in which they could donate.

People have a choice – to be a donor, or to opt out of donation – and the campaign is encouraging people to record their decision on the NHS Organ Donor Register, and share it with family.

Informing family is important, as under the new law, they will still be consulted to check what their loved ones latest views on donation were.  This is to ensure donation doesn’t proceed where the individual didn’t want it to.

Speaking about the impact kidney disease and her subsequent transplant had on her life, Fiona said: “Looking back, I had no idea how ill I actually was towards the end.  I was getting through life, but was constantly tired and had no concentration.  Motivating myself to do things became harder and harder. 

“I wanted to hold off dialysis until my son started school, but could start to feel things dipping.  I had restless legs and couldn’t sit for any length of time, I felt sick when I ate and was in bed for 7.30pm every night.

“I got the call just minutes after my son’s fifth birthday party and the transplant surgery all went to plan.  I was home six days later and things just got better and better.  It’s quite unbelievable the change it’s made to my life and I have my donor to thank for that.

“I am very pleased that Scotland is moving to an opt out system. You don’t truly understand the impact of organ donations until your life is touched by it and I hope that the move will help increase the number of viable organs available and help those waiting.  Because of organ donation, my son has his mum back, and I have a future.”

Talking about the law change to an opt out system from 26 March, Ross said: “I wouldn’t say life on dialysis was easy, but I knew it was keeping me well, and then the transplant changed everything.

“I have always felt strongly about the law changing to an opt out system, and I even approached the Scottish Parliament, which is when I learnt the wheels were already in motion for the Bill. 

“I am really pleased to see the law finally coming into action. It’s the simplest way to make a difference while making sure everyone knows they’ve got a choice. If you don’t want to be a donor you just have to opt out.

“Knowing that both my sons have the same condition as me, I’m grateful for developments like the law changing before either of them finds themselves in the position I did.”

For more about the law change, and to record your donation decision, visit organdonationscotland.org or call 0300 303 2094.

Kidney Care UK is hosting a webinar tomorrow (Thursday), which will involve a range of speakers and experts answering questions around living well with kidney disease, kidney health, and the forthcoming organ and tissue donation law change in Scotland.

The event is open to anyone affected by kidney disease, and you can book your place here: www.kidneycareuk.org/scotland-webinar