“Time to make it count”

The recent coverage of the NHS clampdown on “prescription fraud” coincided with the anniversary of my daughter’s death.

​Emma had mitochondrial disease. It’s progressive and currently there is no treatment and no cure. There are only drugs to manage your symptoms and, with hope, prolong your life. Emma became ill at 21, at a time when the world should have been at her feet. She largely got her head around all that and dealt with her illness with tremendous courage, but she could not understand why she was also forced to struggle to pay for the prescriptions that were so essential to her when others were exempt. 

She worked reduced hours due to her illness and lived with her partner, a newly qualified nurse, so was not entitled to any help with charges.  The cost and injustice were too much for her to bear.  For her, the lack of exemption from prescription charges effectively invalidated her illness. It was as if the NHS was saying, ‘Other illnesses count, but yours doesn’t.’

When you support your child of any age through a serious illness, your desire to protect them grows ever stronger, at the same time your ability to do so grows weaker. When you can’t alter the big things – the illness, the prognosis, the pain your child is in – it becomes more important to try and at least change the things you can.  At first, we paid for the prescriptions ourselves, but Emma didn’t want dependence on her parents as an adult, so we decided to take it upon ourselves to collect Emma’s prescriptions and reluctantly, but purposely ticked the box that said she didn’t have to pay, because it seemed the least incorrect thing to do. We wanted to be held to account, to have our day in court, to pay the fine if we had to …  and to raise the profile of this injustice. We didn’t do it lightly, but couldn’t support such a system within the NHS – an NHS which we believed was about the burden of cost not falling on the long-term sick.

It’s astonishing that people with cancer had to pay prescription charges for their drugs until 2009 when cancer was added to the exemptions list ... the only time it’s been adjusted in 50 years. And yet people with illnesses just as devastating still pay for their vital prescriptions drugs every single day.  This is not about ‘my illness is worse than your illness’ in any way. This is about treating people fairly and equitably.
I have to speak for Emma and her feelings on this because she can’t: the illness that the prescription charge exemption didn’t acknowledge killed her last September, aged just 28. Her ‘long-term illness’ has ended all too soon.

The most we can hope for now is that Emma’s death will count. On Emma’s behalf, I ask you to please see how cruel and unjust it is to negate someone’s illness by not including it on the exemptions list.
We need outrage. We need the same outrage for Emma – and others like her with a whole variety of horrendous illnesses – that we’d have for people with cancer in this position. Having an unfair list of conditions which are exempt from prescription charges is simply not okay. 

We need a review. We need change – and we need it now.

Author: Christine Beal 
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You can find out more about Emma's Mito Mission here 
​https://www.youtube.com/watch?v=KZVu61sFH6g

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