Kidney Care UK is pleased to announce a new commitment to improving transport to dialysis. The NHS in England has released new proposals on transport to and from hospital, which includes people on dialysis in kidney units. It’s often called ‘non-emergency patient transport’ or NEPTS but to 21,000 people on dialysis it’s the way you get to and get home from your treatment. As a member of its transport Expert Advisory Group Kidney Care UK has engaged extensively with NHS England on this report to make the case for improved quality and access to dialysis transport. We did this using your experiences including what you have said through the annual PREM (patient reported experience survey). This is the first time that the NHS has reviewed transport for many years so it is much-needed. Subject to support for its recommendations this system will be brought in over the next two years.
What does the report say?
It says ‘ We will introduce a universal commitment to transport support for all journeys to and from in-centre haemodialysis...
What does this mean?
This commitment means free transport and is either:
- Specialist transport (such as an ambulance), when adapted vehicles or staff with particular training is required, or
- Non-specialist transport (using a car), when people need less support, or
- Simple and rapid reimbursement for the cost of your journeys if you are able to drive yourself, or your family or friends take you, or you choose to use public transport, including any car parking charges not covered by the existing free car parking commitment.
This commitment does not depend on your income. It also says that the appropriate type of transport should be a shared decision, reflecting people’s needs and preferences as well as the appropriate use of NHS resources. Patients should be empowered and supported to retain their independence and a personalised approach should be promoted. In other words, you should be able to talk to someone about transport and agree how you are going to get to and from dialysis. Furthermore, a new group is being set up to monitor how well the service is working, and to report back on it publicly.
Professor Stephen Powis, the NHS’s national medical director, said:
“The NHS is easing the health and financial costs of long-term conditions.
"Digital, video and phone consultations all have their part to play, but each year patients still need millions of convenient face-to-face appointments with hospitals and GPs. That's why these new arrangements - developed in partnership with patients' groups - will make it easier to get convenient NHS care, while easing the financial burden of long-term health conditions and helping reduce the health service's carbon footprint."
Fiona Loud, Policy Director of Kidney Care UK, said:
“As a member of the NEPTS Review Expert Advisory Group, we are delighted to welcome the universal transport support commitment for all of the 21,000 kidney patients on dialysis, who receive their treatment in hospitals or satellite units.
"For far too long we have heard about the variable and often difficult experiences many individuals have when travelling for their life-sustaining treatment, with transport regularly at the bottom of Kidney Care UK’s annual survey of patient experience.
"These new proposals show a new determination to improve patient care. National data, including waiting times, will be monitored and published, providing a real opportunity to improve the day to day experience for people who have to make over 300 journeys a year to get to and from their life-maintaining treatments.”
Imelda Redmond CBE, National Director, Healthwatch England, said:
"It’s good to see that NHS England have listened to the experiences of thousands of people with this review and committed to significant improvements to better support them in getting to and from their hospital appointments.
“With the key challenge people told us about being the vague eligibility criteria for travel support, we hope the changes to set more consistent measures that determine entitlement will be particularly welcomed, along with improvements to patient communication and access to additional financial or information support outside of the service.
“People requiring non-emergency hospital transport are often older, disabled or living with a long-term condition, such as patients needing renal dialysis. For them, these services are incredibly important in ensuring that appointments aren’t missed, or that transport issues don’t exacerbate the physical and emotional stress of travelling and receiving medical treatment.
“We look forward to supporting NHSE in implementing the changes and ensuring they work for everyone who relies on hospital transport.”
What about my other appointments?
For other hospital appointments you may have, the way you get there will depend on what that hospital or practice offers for that treatment but you will be entitled to some clear information about this. For example, we would not anticipate a change in the offer of transport following a transplant but would expect the hospital team to discuss it with you.
For many years Kidney Care UK has been working highlight the impact of transport on your experience and life as a person on dialysis, and also to use the evidence to change policy.
We co-ordinated the production of a vital report, Finding our Way together, in 2019, which summarised the differences in transport provision and quality across the country and proposed a change in policy to make it clear that transport is an essential part of kidney care. The report hit home, and we joined with Healthwatch and Age UK in a further report, There and Back Again, to emphasise the case for change. The head of the NHS, Sir Simon Stevens subsequently announced a commitment for the NHS to review its transport guidance. Kidney Care UK joined the Expert Advisory group to make the case for dialysis transport. There was a public consultation and several meetings with stakeholders in early 2020, one of which Kidney Care UK chaired.
Read the NHS in England’s statement on travel for Dialysis
“Around 21,000 renal patients in England need haemodialysis treatment in hospitals or satellite units. They usually receive treatment three times a week; over 300 journeys per patient every year, often for the rest of their lives. Given this, patients say that transport to and from the dialysis unit (and time spent waiting for that transport) is one of the most important issues affecting their quality of life, overall health and disease outcomes. The importance of getting patient transport right has been highlighted by Kidney Care UK, the Renal Association and many other groups and patients.
The NHS England survey of 64 renal dialysis units, serving around a quarter of patients nationally, indicates that around 62% of patients use NEPTS all of the time and a further 7% some of the time – probably accounting for over 4.2 million journeys each year.”
What happens next?
The Expert Advisory group, of which Kidney Care UK is a member, will meet again to review the feedback and suggestions for improvement. It is anticipated NHS England groups will start to implement the new guidance from April 2022.
How will the impact of the new guidance be measured?
One of the repeated issues which people can experience with dialysis transport is waiting times. We have asked that the impact of the new guidance on waiting times is measured and acted upon. A new commitment to monitoring and publishing waiting times is most welcome and Kidney Care UK will continue to advise/monitor this.
NHS England says that it will measure the effectiveness of this universal offer through monitoring and publishing specific performance information on journeys for renal patients including:
- Average waiting times
- A measure of long waits
- Other patient-focused performance metrics in the new minimum data set.
A success criterion for this upgraded service will be that average waiting times for renal patients should be lower at the end of the implementation period than today. We asked dialysis units for a high-level average waiting time as part of our survey and found the average waiting time to be around 45 minutes, but the range varied from 15 minutes up to 90 minutes for several units.
The implementation team and evaluation will also seek out and spread best practice on shared decision making for renal patients. These specific measures fit within the broader measures for accountability, minimum standards, transparency and journey choice which will support all patients including renal patients.
Can I give my opinion on the report and its suggestions?
- We launch ‘Finding our way together’ with partner charities in June 2019 following years of concern.
- We work with Healthwatch England and Age UK on a further report, ‘There and Back Again’.
- NHS England accepts its recommendations, Sir Simon Stevens announces a national review of transport and Kidney Care UK joins the Expert Advisory Group in October 2019
- NHS England holds a consultation on the transport review February 2020
- NHS England announces new transport recommendations and a further chance to have your say August 2021
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