Contents

• Meeting the cost of home dialysis treatment – together we can
• Press release sent to the national press
• Letter of urgent request to review reimbursement for kidney patients who dialyse at home
• Andrea Reavill shares her experiences with the cost-of-living crisis as a home Peritoneal dialysis patient
• How you can help with the campaign
• Help with financial support

New reimbursement toolkit for home dialysis

The NKF alongside other kidney charities and professional bodies have been working with the UKKA Kidney Patient Safety Committee.

Together we have produced a toolkit to support reimbursement of additional utility costs for home dialysis. We are pleased that this toolkit has been produced to assists trusts with reimbursing patients who dialyse at home.

The documentation outlines provider responsibilities (NHS Trusts/Health Boards) for capital costs of home adaptation and reimbursement of utility costs for home dialysis. This includes remote monitoring, electricity, heating, telephone, water and sewage costs due to haemodialysis or peritoneal dialysis treatments and associated equipment.

The renal unit that is responsible for dialysis provision within NHS Trusts/Health Boards will carry out a suitability assessment for home dialysis. This will involve members of the renal multi-disciplinary team e.g. renal technologist and home dialysis nurse visiting the property and discussing the options and logistics e.g. storage with the person wishing to have dialysis at home.

Payment of the national tariff to the patient’s usual dialysis provider is expected to meet these costs as per NHS England Haemodialysis to treat established renal failure performed in a patient's home service specification.

Changes in fuel costs will need to be reviewed quarterly and attention paid to increasing charges and price caps. 

NHS Trusts/Health Boards will be responsible for:

• Initial environmental assessment
• Capital whole life costs
• Reimbursing additional utility costs
• Ongoing clinical/technical support
• Community support

For full information on reimbursements, council tax reductions, under-occupancy charges and insurance read the full recommendations for practice outlining responsibilities of NHS Trusts/Health boards documentation. 
 

• Patient assessment and agreement form
• Home dialysis reimbursement calculator tool for water and electricity based on the dialysis prescription

 

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Meeting the cost of home dialysis treatment – together we can

With utility bills surging to a new record high, the National Kidney Federation (NKF) have heard from home dialysis patients that they are considering to return to hospital (in-centre) for their dialysis treatment, as they can no longer afford to have their lifesaving treatment from the comfort of their home.

With this in mind, the NKF are campaigning to make home dialysis affordable for patients, which gives the freedom of choice to dialyse at home and be reimbursed suitably to cover the costs of treatment.

Press release

A press release by the NKF has been sent to national press to inform of the new campaign and to highlight the discrepancies that have come to light with regards to the reimbursement of utility charges for patients who dialyse at home. To read the press release view here.

Letter of urgent request to review reimbursement for kidney patients who dialyse at home

The NKF have written a letter to Chief Executives of NHS Trusts and also sent a copy of the letter to members of the All Party Parliamentary Group, Chairs of Kidney Patient Associations and Clinical Directors of Renal Services to push for further action. A template of the letter can be found here.

Andrea, aged 53, based in Waltham, Grimsby shares her kidney journey and her experiences with the cost-of-living crisis as a home Peritoneal dialysis patient...

"Although Polycystic Kidney Disease is hereditary, I chose not to be screened for the disease, however at 24 years old, on a regular maternity scan it was found I had the disease.

After my diagnosis, I was followed closely by the Hull Renal Team, it wasn’t until the age of 37 I needed dialysis. I chose Peritoneal dialysis as this fitted in with my young family at the time.

I remained on dialysis for 4 years until I got the green light for a transplant.

A transplant, whilst a lifeline, is not a cure and although my transplant kidney worked well for 12 years, my body developed antibodies which meant my own body was attacking the kidney, which means I had to return to dialysis treatment, I have now been back on Peritoneal dialysis for three and a half years which I do each night for 12 hours.

The reason why I chose the path of doing Peritoneal dialysis instead of Haemodialysis, is because I have an abnormal fear of needles. I have had brief spells on Haemodialysis; however, I was poorly afterwards which made working difficult.

I receive no reimbursement for electricity usage from the machines that I use currently.

Being reimbursed for the usage of my dialysis machine would take a huge pressure off of my financial worries. I am on a limited income and find it hard to pay, electric, food and heating. I cannot live without my machine.

At present I have noticed a price hike at around £40 a month, how much this is down to the machine I do not know.

I have been taking extra precautions to save money, at the moment the heating is not on, however kidney patients do feel the cold and I do fear that in the winter the heating will have to go on. I feel the cold very easily, I have various throws that I use and layers of clothing to try and keep warm without using the heating.

Unfortunately, I have nowhere to store my dialysis fluid other than in a shed in the garden. When the weather is warm this is not too much of a problem, however in the winter I have to make sure the fluid is put on the machine earlier in order for it to warm up. Cold fluid gives really bad tummy pains if used cold therefore it’s absolutely vital that you warm the fluid up, a lot of patients do this by switching on their heating.

The NKF charity have been really helpful to me. They have helped me with information and advice on how to get Personal Independence Payment (PIP), without their help I would not be receiving the benefit.

I worry constantly about the cost of living my life. The stark truth is I haven’t got the luxury of affording heating, food, and electric. I would not survive without my machine. I would like to see the governments reimburse us for our electric, at the moment we receive nothing. I believe trusts should have funds to help home dialysis patients.”

How you can help with the campaign

We are asking our supporters to get involved with the campaign by writing to the clinical director of renal services at the NHS Trusts in their areas about the cost of living crisis, and offer the support of your KPA to promote home dialysis.

If you are a member of a KPA, please share the report with other members and with your consultants.

You can also write a letter to your local MP, urging them to raise this issue with the Chief Executives of the NHS Trusts in their constituencies. A template of the letter can be found here.

For more information on our Home Dialysis Campaign and our national Peer Support Service please visit here.

Help with financial support

We have provided useful information and links to support patients in need of financial support. To view please visit here.