People on dialysis in a hospital or unit make around 312 journeys a year in order to receive this life-sustaining treatment. It plays a major role in patients’ overall experience of care.
There are longstanding problems with transport to and from dialysis and every year it is one of the lowest scoring themes on the Patient Reported Experience Measure (PREM) survey. Long waiting times and unreliability of non-emergency patient transport (NETPS) makes life more difficult for many people on dialysis. We also think it is unfair that people who make their own way to dialysis often have to cover the cost themselves.
Patient transport: what has happened so far?
Kidney Care UK and partners have published two key reports shining a light on people’s experience of traveling to and from dialysis: Finding a Way Together and There and Back.
This work led to a review by NHS England into non-emergency transport (NEPTS), including dialysis transport which accounts for 50% of all NEPTS journeys. Kidney Care UK, Age UK and Healthwatch England were advisors to the review.
Following this review, NHS England committed to improving the quality of patient transport. It also asked local hospitals to talk to each patient about the best method of transport to and from dialysis, whether this be NEPTS or making their own way by car or public transport. The guidance said people on in-centre haemodialysis should be able to access specialist transport, non-specialist transport or upfront/reimbursement costs for private travel. NHS England said “every patient who needs kidney dialysis will benefit from free transport to and from vital hospital appointments”. They called it a universal commitment.
Unfortunately, this guidance has not been implemented by many local health trusts. Kidney Care UK is continuing to work with NHS England on encouraging implementation, but believe it is unacceptable that some people are still having to pay to travel to life-sustaining treatment.
NHS England (NHSE) have acknowledged the difficulties implementing haemodialysis transport guidance, which has only happened in parts of the South West up to now. The primary difficulty is that guidance is non-mandatory; this means Integrated Care Boards (ICBs) cannot be forced by NHSE to carry it out.
To make progress, in 2023 NHSE convened a haemodialysis transport working group, to produce a Framework to support ICBs to bring in this guidance. The group included monthly representation from Kidney Care UK, ICBs, Kidney Networks & NHS England (NHSE).
By early 2024 a Framework had been co-produced by this group, including information about the essential nature of dialysis transport for patients; and an economic modelling tool to support financial planning and overcome the perception of additional costs.
Kidney Care UK continue to be a committed and active stakeholder in this group and regularly monitor progress, determined to see equal access to transport choice for all haemodialysis patients.
As a positive step, NHSE has started a North West (NW) haemodialysis transport Pathfinder. This aims, over the next two years, to show best practice to ICBs to support further implementation across England. Early signs are promising.
To support implementation Professor Sir Stephen Powis, National Medical Director, NHS England and Dr Emily Lawson DBE, Chief Operating Officer, NHS England wrote in August 2024 to ICBs with an update and letter request. They are requesting ICBs to:
- Assign a senior responsible officer to oversee the consideration and implementation of the universal dialysis transport support offer in their local areas.
- Use the economic model provided in the framework to estimate the cost impacts of implementing the offer locally.
- Set up a working group with its local dialysis units and other key stakeholders to plan for the implementation of this universal offer as soon as possible.
We hope the North West Pathfinder, best practice in the South West together with the request will enable further implementation across remaining ICBs in England. NHSE have ambitions to do this by March 2026. Kidney Care UK will continue to work hard to ensure NHSE keep their word.
In Wales, people can claim to have their dialysis travel costs reimbursed.
In Northern Ireland, reimbursement for travel to dialysis is means tested. You get financial help from the Hospital Travel Costs Scheme if you're on a low income.
Dialysis transport reimbursement: how can I claim?
Speak to your local transport co-ordinator or kidney unit to ask about their reimbursement policy.
Check whether you may be eligible for the separate Healthcare Travel Costs Scheme.
Check whether there are other concessionary travel schemes in your area which may be helpful, for example the Freedom Pass in London or the Disabled person’s bus pass. Read more about support with the cost of public transport if you are disabled.
Please keep us posted on your experiences of patient transport by emailing our Policy team ([email protected]).