Dialysis is an essential, life-sustaining treatment for individuals with end-stage kidney disease. People who dialyse will have, on average, three dialysis sessions per week, equivalent to 156 sessions per year, some of which they might need, or wish to have away from their usual location (known as ‘dialysis away from base’ or DAFB).
Following Kidney Care UK’s campaign success to retain the rights of kidney patients to receive their dialysis care without payment while travelling in the EU post Brexit, we have become increasingly concerned to hear about the considerable challenges people face when trying to access dialysis away from base within the UK.
The situation currently is not good enough and as we believe that everyone with kidney disease should be able to live their lives to the full we want to see more done to ensure that people with kidney disease, who need frequent life sustaining dialysis treatment, are not restricted in their ability to travel, for whatever reason. It is one of the reasons why we provide the Dialysis Freedom service to help people find dialysis slots to enable them to travel.
Recognising how vital the ability to travel with kidney failure is, we fought successfully for the right for people to receive dialysis when they travel in the EU free of charge for many years. While my own experience with dialysis particularly motivated me to lead this work, we hear so regularly from people who wish to travel that we are really concerned and disappointed about this additional restriction in Scotland.Fiona Loud, Policy Director of Kidney Care UK
In England, an NHS England policy recognises dialysis away from base as a fundamental part of the package of care available to kidney patients. The guidelines highlight that individuals who dialyse will not be expected to pay for their dialysis treatment in the UK and that no restrictions should be placed on the number of times they can access dialysis away from base. In Wales, a similar policy is currently under consultation. In Scotland no such policy exists, or is currently being consulted on.
However, recent freedom of information request made by Kidney Care UK to all 14 health boards in Scotland worryingly shows that over a third (five) of health boards place restrictions on the number of dialysis sessions they will cover the cost of annually within the UK. Of the five health boards:
- Two state that they provide financial coverage for up to six dialysis sessions within the UK per calendar year, with one of the boards stating that there is a degree of flexibility on the restriction they place:
[Health board] will meet the cost for 6 sessions away from base but we do consider the patient’s individual circumstances, i.e. if travelling for a family event."Health Board FOI response
- Two have advised that they will cover up to four weeks of dialysis sessions per year, equivalent, on average, to around twelve sessions.
- One has advised that they have an allowance of three holidays per year that they will fully fund dialysis for whether this is for a weekend, week, or a fortnight. This applies to trips both within the UK and abroad.
An additional health board have said that they currently do not place any restrictions on the number of sessions that they will cover the cost of annually in the UK as only a small number of patients in their board wish to go on holiday:
. . . [we are] advised that it should be a 2 week (6 sessions) per patient, but because we have very few patients who want to go on holiday we do not limit DAFB for our patients.Health Board FOI response
A further health board informed us that they restrict dialysis away from base based on its cost rather than the number of sessions undertaken annually, this includes sessions abroad as well as in the UK:
. . . we cap the sessions financially at £3,000 per patient per year – this only restricts out of area sessions where we have to pay for the sessions as many sessions are covered by European Health Insurance Card.Health Board FOI response
At Kidney Care UK, we believe that people who live in the UK who dialyse have the right to freedom of movement, to travel whether this is to visit family members, friends, for work, for study, to attend events, or to take a much needed holiday.
As people cannot take a break from dialysis, a life-saving treatment, Kidney Care UK believes that no restrictions should be placed on the number of dialysis away from base sessions an individual can have per year in the UK.
We will be using our findings to highlight this inequity with the Scottish Government and policy and health care leads. We will also continue to monitor people’s experiences of accessing dialysis away from base in all areas of the UK, if you have any experiences you’d like to share with us regarding any issues affecting travelling whilst on dialysis please email [email protected] We are particularly keen to hear from people in Scotland.