‘This has allowed me to get my life back’ – Kidney patients at Stevenage’s Lister Hospital explain the benefits of home dialysis

John Roberts with his home dialysis machine

John Roberts with his home dialysis machine

Archant

Can you imagine the debilitating impact on your life if you have to spend three days of each week travelling to your nearest hospital only to have needles stuck in your arm, as you are wired up to a dialysis machine for five hours at a stretch. You can’t move much, get up to go to the loo or to answer the phone. You can only sit and contemplate the waste of time.

Sandy Lines and Fiona Loud of the British Kidney Patient AssociationSandy Lines and Fiona Loud of the British Kidney Patient Association

That’s what the 500 dialysis patients who attend Stevenage’s Lister Hospital on a weekly basis have had to put up with – until now.

But on Thursday I went along to see first hand how mobile dialysis machines are revolutionising the lives of these long suffering kidney patients, allowing them to dialyse at home, get their lives back, and even in some cases return to work.

I climbed aboard a mobile demonstration van to meet the almost unbelievably perky retired paramedic John Roberts. By nature he has a naturally upbeat Mancunian sense of humour, but he’s also in a good frame of mind today because he is helping to explain the benefits of the machine that has transformed his life.

When he was first diagnosed with kidney failure some three years ago, John had to make long treks to his local hospital for the weekly grind of dialysis.

The Lister HospitalThe Lister Hospital

But it made him unwell and he felt depressed about the time it took up.

Now he says he is so liberated he can even go on holiday four times-a-year – taking the 34 KG machine and all his dialysis kit with him, to get that vital other ingredient all kidney patients need – sunshine.

He says: “At home I’ve got a massive leather recliner, my wifi, laptop, Netflix, my Amazon stick. I know I’m going to be sat there for four-and-a-half hours.

“When I go on holiday to Spain, this all packs up into a case and the company sends all the dialyser solution ahead so I’ve got everything I need.”

CaptureCapture

In fact the NHS pays for it all to be sent ahead to his holiday address.

“This has allowed me to get my life back.” he smiles.

While we are talking, potential home dialyser Julie Roughan pops into the caravan to have a look at John’s impressive machine. She has been on dialysis for fifteen months after cancer caused her kidneys to fail. She is concerned about the practicalities, but John reassures her: “The worst that can happen is the needle can come out which means you have to just put your finger over it to stop the blood for a few minutes.

“There is a helpline you can call if anything goes wrong and its open 24 hours-a-day,” he says.

It’s easy to feel squeamish with all this talk of needles, but John says it becomes second nature to make the two tiny pin pricks needed for the lines.

Julie says she often spends six hours-a-day at the Lister and that sometimes time slots on the dialysis machines have to be moved. She also has to travel from Hatfield for each treatment.

John tells her: “You will find you will get an awful lot of time back.

“You control when you go on and when you come off, and you make it work for you.”

In fact it’s so flexible that John now spends much of his week travelling around the UK working for Kidney Research UK and the British Kidney Patient Association.

As we leave John to his dialysis and tour the hospital’s dialysis unit to look at other machines, East and North Herts NHS Trust representative Peter Gibson explains what the hospital can gain from home dialysis.

He says: “Whilst studies have shown that home dialysis does work out cheaper for the NHS than hospital dialysis, it’s not really about funding, it’s more about capacity.

“We have about 500 patients using the Lister dialysis service and 24 stations here, so there is always a need for more capacity and that’s the case right across the country.”

It costs between 30 and £35,000 each year to treat one person at hospital for dialysis and there are clearly savings to be made in terms of numbers of staff needed and transport costs for home dialysers.

And as Fiona Loud of the British Kidney Patient Association explains, new technologies are developing to allow other types of dialysis – for example peritoneal dialysis which involves draining fluids from the abdomen – which are much cheaper still.

But as she explains, it’s the trasformation in quality of life which is the crucial factor. She says some dialysers who have had their careers wrecked by their diagnosis may even have the time to return to work.

The only other option for dalysis patients at end stage renal failure, is of course a full kidney transplant, but with five-and-a-half thousand people on the transplant waiting list and very few matchable organs available, that’s simply not an option available to most people.

Laura adds: “We want to help people get the best possible outcomes they can and make sure they are equally available everywhere across the country.”

Among the manufacturers of home dialysis machines we met, are NxSTAGE medical UK Ltd at www.nxstage.co.uk and QUANTA at www.quantafs.com.

To register to donate your organs in the event of death visit www.organdonation.nhs.uk and make sure you inform your relatives of your decision.

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