Cost of living – action on your dialysis costs

We have been campaigning hard on the additional energy costs faced by people using home dialysis, as this is particular to kidney disease and is a problem that needs a specific and urgent response. However, we are very aware that all kidney patients may be facing challenges thanks to the cost of living increases.

Kidney Care UK's home dialysis costs reimbursement campaign

We are pleased to let you know that NHS England are now taking action to ensure all Trusts provide reimbursement payments to cover the additional energy costs of their home haemodialysis patients.

They are also going to make sure the same arrangements apply to adult peritoneal and all paediatric home dialysis patients.

NHS England have written to every Trust in England to ask them to review their arrangements to pay patients back for the costs of haemodialysis at home and report back by 31 August. Through the renal networks, they will be asked to report back on progress every month. Read the NHS England Renal Dialysis Reimbursement Brief (July 2022).

• In Wales reimbursement for home dialysis is already in place
• We are pursuing a similar provision in Scotland
• We are pursuing a similar provision in Northern Ireland.

There’s much more work to do but to every one of you who has spoken to us about the costs of living, has agreed to speak to the media, written to their MP or donated to our campaign – thank you.

Please let us know if you have started to hear from your hospital about reimbursement (or not), so we can also monitor whether improvements and proper refunds are happening. Write to us in the policy team at [email protected]

We know that this is just one step, but it is an important one – and it shows what can happen when the voice of people with kidney disease is being heard.

Campaigning for home dialysis reimbursement in Parliament

We are talking to Parliamentarians from all political parties across the UK. We have met with the Policy Research Unit, a pooled research service for Conservative MPs in Westminster who prepare briefings for debates. They wanted to learn more about our work on the cost of living, so that they can share information with the MPs they support.

We also sent a briefing to all MPs, resulting in 10 requests for meetings with MPs from a range of different political parties. We have briefed the MPs we met on the many challenges faced by kidney patients, but particularly cost of living increases. Between them, the MPs we have met have kindly asked 17 questions in Parliament about dialysis costs and reimbursements and written a number of letters to Ministers on the cost of living issue. This helps to keep the pressure on Government to do something to resolve the issue!

Our work resulted in the Prime Minister being asked in Parliament about the costs of dialysis and a reference to our Priced Out Of Existence campaign.

Dialysis outcomes debate in Westminster Hall

We were delighted to support a debate about dialysis outcomes in Parliament’s Westminster Hall, proposed by Jim Shannon MP, during which there was a lot of discussion about the importance of good kidney care and in particular the needs of people with kidney disease. The debate included reimbursement and important contributions on the differences in different parts of the country plus relevant discussion about prevention of kidney disease itself, where possible.

Gillian Keegan, the Minister for Care and Mental Health, remarked: "We fully expect providers of at-home dialysis services to inform patients about that financial support available to them, and I have asked my officials to keep me informed about rates of reimbursement over the coming months, to ensure that the policy is working well."

The Minister also spoke about home dialysis reimbursement for children, which we had raised with her. “We were talking about home haemodialysis support for children. That applies to about 20 children, as of February 2022, and it is currently at the discretion of individual providers. However, the renal service clinical reference group has begun an urgent review of the reimbursement process for children.”

In a subsequent answer to a follow-up parliamentary question, she confirmed that this new guidance should be available in July. (Please note: we think this will now be by the end of August.)

We wrote to every hospital performing dialysis and surveyed their current practices in order to analyse the differences in the ways in which people do or don’t get refunded for costs of dialysis at home in England.

Home dialysis reimbursement: next steps

We are expecting a comprehensive summary of actions and timescales, which we will share on our website.

Trusts already have a duty to provide reimbursement for additional utility costs of home haemodialysis, so if you are on home haemodialysis and you do not receive reimbursement, you should speak to your Trust now.

When we learn more about the process for people using peritoneal dialysis and paediatric patients we will share widely.