For the 3.5 million people living with chronic kidney disease in the UK, the cost of living increases have been especially difficult. Many people were struggling, but the increases in the costs of utilities, fuel and food will push thousands of kidney patients into real financial hardship.
We heard from people on home dialysis that they were having to choose between dialysing, heating their homes and putting food on the table – this is not acceptable. No one should have to choose between life sustaining treatment, heating or eating. People with kidney disease have told us that they feel like they are being left out in the cold. No one should feel this way.
We are calling on policy makers, parliamentarians and all utility companies to do everything they can to help people with kidney disease who are facing huge anxiety about how they will make ends meet. Please see our latest Kidney Care UK Cost of living briefing which we are sharing with MPs.
We will continue to campaign for longer term support for people with kidney disease who need to keep their homes warm in order to maintain their health and wellbeing.
Urgent support is needed for home dialysis patients
We have highlighted to the government the specific challenges of people who are on home dialysis and having to cover the costs of running the machines. Our campaign led to an NHS review of all trusts in England to ensure reimbursement was in place for adults on home haemodialysis and a commitment to introduce reimbursement for children and adults on peritoneal dialysis. But across the whole country there is more work to be done before everyone is reimbursed fairly and consistently.
In addition, people who drive themselves to and from dialysis in hospital are having to cover the costs of fuel. This is despite NHS guidance that reimbursement should be in place in England by April 2023. We are campaigning for reimbursement for fuel costs to be available across the UK.
Kidney Care UK calls for government and NHS trusts to act urgently
- NHS Trusts and Health Boards should ensure a straightforward, accessible system is in place to enable people on home dialysis to be fairly reimbursed for additional cost of utilities. This must be for all dialysis modes and should be regularly reviewed as energy prices change.
- Reimbursement should cover heating the room where dialysis takes place, either through Trust reimbursement or schemes such as Warm Home Prescriptions.
- People with kidney disease need to stay warm to maintain their health and often feel the cold much more than most people. It is important this group, as essential high users of energy, are protected against excessive energy costs. Government should commence work on developing longer term protection for energy customers with long term conditions like kidney disease, including a new social tariff to help vulnerable people heat their homes.
- NHS Trusts must work with the regional Integrated Care Boards or local Health Boards in Scotland to prioritise implementing dialysis travel reimbursement and ensuring all staff and patients are aware of how to access payment.
Share your experience of living with kidney disease and help us fight for better support
If you’d like to take action too, please make sure your MP knows about the challenges facing kidney patients and ask them to act.
An email is the easiest way to contact your MP (England), MSP (Scotland) or MS (Wales). Find your local representative's details on WriteToThem (just enter your postcode and follow the instructions). Please add your own personal experiences to help really highlight the impact the cost of living increases are having on your life.
It would be really helpful if you could let us know what your parliamentarians say (you can cc [email protected] in your email). If they do offer to meet you, we will be happy to help with that meeting.
Take action on Twitter to share your views
We have joined forces with a number of utility companies to provide vital support for people with kidney disease across the UK. Through these partnerships we are providing additional help to vulnerable people living with CKD.
If your utility company is not one of our partners you may like to contact them to ask what they are doing to support vulnerable customers. If you are on Twitter, you could tweet them the following:
The rising cost of living means kidney patients feel #PricedOutOfExistence @kidneycareuk are supporting people but what are you doing @<inserthandle>?