Right now, in the UK, there are about 60,000 people with kidney failure, with just over half alive due a kidney transplant and the remainder on dialysis.
Transplant is the gold standard treatment for kidney failure, but not everyone is able to have one and sadly there are more people needing a kidney transplant than there are kidneys available via the organ donor register. Every single day, one person will die while waiting for that precious call.
For those 29,000 people on dialysis, they need either to go to hospital three times a week for 3-4 hours at a time for their life-sustaining treatment or they can do this at home. Either way, dialysis is a very challenging treatment. People on dialysis often have other conditions to manage, such as diabetes, and many people will feel unwell during and just after dialysis itself, as blood pressure can be too high or too low, and nausea, fainting and confusion are common.
Currently, some dialysis patients will qualify for free prescriptions, but this – rather complicated – exemption is based on the fact that any dialysis patient who has a permanent fistula (which is access for dialysis needles) that ‘requires an appliance or surgical dressing’ is entitled to medical exemption. They also need a doctor to confirm this and the NHS guidance on this even states that ‘whether or not you have a permanent fistula that requires an appliance or surgical dressing is a matter for your doctor's clinical judgement’. This means that in some cases a doctor will approve patients for exemption, but in some cases, they may not – based on their own interpretation of the rules. We have heard from a number of dialysis patients who were able to get exemptions and others who were not, so we know that there is a postcode lottery out there with some patients slipping through the net.
If that isn’t bad enough, the injustice really kicks in for those people who do receive that life-transforming transplant. To ensure that your body doesn’t reject your new kidney or kidneys, transplant recipients have to take immunosuppressant medication for the rest of their lives. They also need to take many other medicines to manage blood pressure, diabetes and the other conditions a person with kidney failure will have. Despite this, because they are now no longer on dialysis, they no longer qualify for free prescriptions. At the time when a person possibly needs it the most, this support is taken away.
Many patients go on to purchase a Pre-Payment Certificate, but they tell us how unfair it is and how they feel discriminated against, or that they were not aware their exemption was removed and have had to pay a fine. This group are also affected by the recent reports that the NHS will no longer provide sunscreen on prescription, as their immunosuppressants give a risk of skin cancer which is six times higher than the rest of the population.
It is not fair that anyone with a long term health condition should have to pay for their prescriptions and we think the current system is particularly unfair for kidney patients, who need to take medication for the rest of their lives, just to stay alive. We’re calling on the Government to review and reform this unjust and outdated system to make prescriptions free for everyone living with a long-term condition in England, as they are in other parts of the United Kingdom.
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Fiona Loud, Policy Director at Kidney Care UK
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