Time marches on whether I want it to or not. I went to my GP and asked for the new anti-epileptic drugs (AEDs) that the NHS neurologist had prescribed. The GP typed the name of the AED into his computer and big letters came up on the screen ‘DOUBLE RED’. ‘Computer says no’, the GP said. ‘What does that mean?’ I asked. ‘Well, these drugs are expensive and, if you want them prescribed to you on the NHS, a Kafka-like panel needs to decide, based on the evidence that your neurologist supplies to them, whether the NHS will pay for it. This panel will probably know nothing about epilepsy but we just have to let them get on with it because that’s their job. It’s also worth noting that if you lived in a different county the NHS might prescribe this medication to you without going to a panel because different areas like to think differently about these sorts of things just to confuse everyone and to make patients feel that the world is unfair’ (OK so those weren’t the GPs exact words, but that was the gist of it). ‘Going to a panel sounds like six-month process,’ I thought to myself. ‘But I could still get the medication on a private prescription.’
So, I went back to my NHS neurologist and said ‘Can I get a private prescription for this AED that-might-help-me-but-might-not-and-nobody-really-knows-but-it’s-worth-giving-it-a-go. And she said, ‘OK, I’ll prescribe it to you on a private prescription.’ I said that I was a bit flabbergasted because I thought that she would have to write a letter to a private doctor so that private doctor could write out a private prescription. ‘I can write it,’ she said. I don’t want to make anything more difficult for you’ (these were her actual real words and even I remember them and I really did feel like giving her a big hug because sometimes it seems like some doctors do actually want to make things more difficult for me). ‘However, I have to let you know that even if the new drug does work for you it doesn’t mean that the panel will decide that the NHS will pay for them. The panel makes their decision based on the evidence provided before you start taking the meds.’
At this point I must thank my parents who have decided that it is worth spending my inheritance on me now by paying for these drugs and all the other non-NHS-funded treatments I have had over the years, whilst they are alive to potentially see the benefits (It goes without saying that this is not the only thing that I should thank them for and there are millions of others). The amount of money that my parents have spent on these treatments is not enough to warrant an appeal via a Go Fund Me or the like but, on the other hand, the costs are probably prohibitive to many people with epilepsy). Thus, with my parents financial (and other) support I could not have got to where I am today. The new drug costs £175.01 a month on private prescription compared to £43.75 for the one I am currently on.
I made some precautions before starting the new drug – I bought a fixed landline as we didn’t have one already. Changing meds is a known seizure risk. I was concerned that if my mobile was lost (this happens roughly 82 times a day) or the battery was dead (seven times a day) if my husband wasn’t with me and I had a seizure my children couldn’t call on an adult for help. They can now call for help. Changing anti-epileptics is complicated. Under the advice of a neurologist you increase the medication slowly – every two weeks changing the dosage. So, I drew up a chart with how much medication I should take each day. The last time I had changed AEDs, I got confused by this whole process and had a clonic tonic seizure.
So that’s where I am now – slowly increasing the new medication but still taking the old one. I am praying that I will eventually be able to come off the old one which may have more cognitive side effects than the new drug. Do I feel any different now that I am on the new meds? No, but others have commented that I seem brighter and stronger. Is that because of the meds? I really don’t know. It could be because by dealing with my situation I have become stronger and more resilient but it could be because of the meds or it could be a combination of both.
In other developments, my dietician has suggested that I change from the ketogenic diet to something called the Low Glycaemic Index Treatment (LGIT). It is similar to the ketogenic diet but less restrictive and for some people with epilepsy it produces the same results. However, I discovered a long time ago that my brain is actually a human experiment and as such I should not change two variables at once (ie my diet and the meds) so I will consider changing onto the new diet after the changes to my meds are complete.
I have also been assessed by adult disability services for support around the home. My social worker thinks that I have a strong case to have a regular support to manage my home. Now you might be wondering why I haven’t been assessed for this support before since I have been banging on about all my problems for two and a half years now. But what I have learnt (the hard way) is that often medics live in silos and they don’t know what services and benefits patients need or are entitled to. So, I found out about adult disability services almost by accident and although some people have a theory that help doesn’t arrive until you are ready to receive it, I think that is a poor cop-out for people not being offered help when they actually need it most.
Thus, my journey continues, my eldest daughter will be starting secondary school this year and will have also have her batmitzvah (confirmation). I desperately want to remember everything about these events. So, I battle on trying to find a solution to my problems. For some reason, even though I have tried, I can’t give up. I’ll let you know what happens.
To see my other blogs please go to sharonrossblog.com
 When I initially wrote this blog I referenced a paper that said that one in eight people with epilepsy are homeless (see 1 below. However, since then the government have also carried out research (see 2) that found that over 60% of people with epilepsy are unemployed which further evidences the fact that many people with epilepsy would find it hard to seek alternative treatments. 1. https://www.epilepsysociety.org.uk/news/new-initiative-support-homeless-people-epilepsy-28-07-2016#.XIl1HSj7RPY 2. People with disabilities in employment Number 7540, 17 May 2019 (House of Commons Library)
6 thoughts on “47. 13th March 2019 – Time”
Good luck with the new regime, xxx Gill
Hi Sharon it’s been great following your blog and I thank you any chance you would share the name if your new medication
Thanks. It’s called brivaracetam
Thank you and I hope you have success
I hope these new drugs work. I hate it that everything is so difficult. Bless
thank you for your support. much appreciated
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