Widnes man backs kidney charity campaign for more investment

Gary Hughes had high blood pressure (hypertension) for two years before he was diagnosed with Goodpastures disease - an autoimmune disease which damaged his kidneys.

His hypertension could have been a symptom of his kidney disease, but doctors didn’t pick this up until things started to go 'very' wrong.

The 59-year-old had to fight for tests to be carried out, then when the results came through late at night, he was ordered to go to hospital immediately.

“They wanted to move me to the Royal Liverpool Hospital, but then they couldn’t as my potassium was too high,” he said.

“I was in ICU overnight and they had to put a temporary line in me for emergency dialysis.

“It was all done in a rush and was a bit of a blur. It was pretty scary, I didn’t really know what was going on.

“Because the Goodpastures wasn’t detected sooner, it had irreparably damaged my kidneys.

“I was told I would need dialysis long term and I needed to get on the transplant list.

“I was pretty devastated, it was all a shock to me.”

Gary is now reliant on dialysis to stay alive.

Patients receiving dialysis treatment usually spend four hours at a time, three times a week attached to machines that replicate the role of the kidneys.

The treatment itself and the after-effects have a significant impact on patients’ ability to work, socialise and live a normal life.

Following his diagnosis, Gary is now backing Kidney Research UK’s call for more investment in prevention and diagnosis.

It comes as the charity says urgent opportunities to diagnose life-changing kidney disease are being missed, with patients left unaware, uninformed and unprepared for the devastating diagnosis, new research has revealed.

A survey of kidney patients, commissioned by Kidney Research UK, found that the later patients were diagnosed, the greater their likelihood of ‘crashlanding’ onto dialysis, causing maximum disruption to their lives, harming their mental health, their work prospects and their household income.

Around half of the respondents reported having at least one known risk factor for kidney disease such as high blood pressure or diabetes before their diagnosis. Of these people, a staggering 53 per cent received no warning that their kidney disease could become far more serious, suggesting that opportunities to prevent patients sliding into kidney failure were being missed.

Whilst a transplant is the best current treatment, not every patient will be eligible and six people in the UK die every week whilst on the waiting list. 

Patients like Gary that are diagnosed late can be described as ‘crash-landers’ as they can need almost immediate dialysis treatment with little time to prepare.

Two-thirds of survey respondents on dialysis said they had started treatment within just three months of being informed they would need it. Almost half did not believe they had enough time to prepare practically and/or mentally for the demanding treatment and abrupt change in lifestyle.

The consequences can be really tough, as Gary’s experience shows, firstly enduring months of treatment with chemotherapy drugs and steroids, now dialysing four times a day.

Although he says the care he’s received since his diagnosis has been second to none. He’s hoping for a transplant, but doesn’t know when, or if one will come through.

 “We’ve had a complete change in lifestyle, going from being able to choose what we want to do every day to our lives revolving around dialysis,” he said.

Alison Railton, head of policy and external affairs at Kidney Research UK, said: “Newly recommended drugs can slow down kidney disease progression but not only are too few eligible patients being offered these, many patients are also missing out on valuable time to protect their kidneys due to late diagnosis. 

“The results from our survey show, alarmingly, that patients are unnecessarily suffering due to late diagnosis. And we know the number of patients in the more advanced stages of kidney disease is projected to grow by almost 700,000 within ten years if drastic change is not made.”

 “Government must invest in prevention and early detection and equip GPs to test people at risk of developing kidney disease to identify those who could benefit from  medications and advice.

“ Last year, we issued a report sounding the alarm that kidney disease is on the cusp of becoming a public health emergency that could cripple the NHS, with the number of dialysis patients predicted to increase by almost 400 per cent by 2033.

“The time to act is now.”