Epilepsy, the National Health Service and the post code lottery – A Tale of Two, or Three or Many Postcodes

I have had some time to think about writing this post. It was sparked by my fellow bloggers post about the loss of her epilepsy nurse (1).

I do not have an epilepsy nurse. I had to put up quite a fight to keep my consultant neurologist.

First I would like to say thank you to my Consultant Neurologist and to my GP Doctors medical practice. I would like to say thank-you, you are all great and you are all doing the best you can in what appears to be increasingly difficult conditions in relation to funding health services in the UK.

But in relation to access to health care for epilepsy, this is my story.

As a child with epilepsy I saw my consultant pediatrician and was assigned to him until my 18th year when I finally became an adult under UK health provision.

He tended to my health care needs and oversaw my prescription medication. He was a lovely man and I was sad to hear he has now passed away.

I encountered the biggest problems with seizures whilst I was at college in my late teens and early 20’s. I had moved away from my home hospital in Wales and after a couple of years ended up in England.

There did not seem to be any plan for who would oversee my medication and epilepsy care. I think on reflection that this was at a time when there were no National Institute of Clinical Excellence (NICE) guidelines for epilepsy care (2)(3) in the UK. Through organisations like Epilepsy Action (4) awareness of the importance of epilepsy care has also grown amongst health care professionals.

My GP (General Practitioner) in England was in charge of my medication and decided to change it. The change was made (as it always is) in my best interests. When I had a significant deterioration in seizure control because of the new medication it took 2 years for me to be assigned to a Consultant Neurologist in a different county in England.

England has different health care arrangements by different County’s much like Wales, but these shift depending on where the specialist services are located.

The consultant who I was assigned to was an expert in his field, but he had a LOT of patients and not a lot of time for me. This experience was not a positive one.

I moved from one county in England to another county, and despite significant problems with seizures there really wasn’t much help from my then neurologist because he just gave me more and more medication which didn’t work.

It is difficult not to want to apportion blame, but I have come to the conclusion that when things go wrong rather than being one person’s fault it is in fact a huge system failure that by and large results in poor health care.

I think that medication is seen as the cheapest option and therefore, for a lot of people the only one.

Finally after some years, my GP decided to take action and referred me to a new Neurologist. This is the one I see to this day. I hold him in high esteem and think he is very thorough. He does listen to me, even though we have differences in opinion.

The problem with this was we had to start from scratch.

He left no stone unturned in the search for my brain squiggles (EEG), and although it took years for him to confirm that I am indeed epileptic, at least I now have closure on this. It made me highly anxious that there may have been some possibility that I could have a brain tumour, scar or be so deeply troubled that I might be able to lose consciousness and go blue and have convulsions all by myself. Then there were the lights, headaches, myoclonic jerks and medication side effects as well as partial seizures.

I could access the epilepsy nurse under my Neurological Consultant in England.

I will never be able to thank my neurologist enough for removing most of my medication.

I can now think.

But it wasn’t over there.

I am now back in Wales and continued to see my neurologist in England without any problems for several years. I did not have an epilepsy nurse, but that didn’t matter so much because I was assigned to a specialist neurologist.

Then the local health board was re-arranged to create a different funding structure a few years ago.

The county where I live does not have a Specialist Consultant Neurologist for Epilepsy or Epilepsy Nurse.

One day I got a letter from the hospital in England saying that my health board were no longer going to pay for my neurological consultations.

This decision had been taken by the local health board without assigning me to a Consultant Epilepsy Neurologist in Wales, or Consulting my General Practitioner or my consultant neurologist in England.

I was absolutely furious. I made a complaint with the help of an NHS Advocate.

I was not able to see my consultant for a year.

It took the health board that long to work out that they would have to pay for me to see a Consultant Neurologist in Wales if they did not continue to fund my trips to England.

As part of my complaint I asked the health board to tell me what they planned to do about access to epilepsy services in Wales.

Then there was a change in Government.

I am now deeply troubled by the current government’s ideas about private health care. (5)(6)

My health has suffered because there was not a joined up service. Under the new proposals, the NHS would be more open to private companies and further fragmentation.

I have seen how private companies and fragmentation has negatively affected the welfare state in Britain.

I find it deeply troubling that more and more people not just with epilepsy but with other health problems will fall through the gaps or face charges for care when there is no money.

If your health is poor you can’t work.

I feel like I have to do all the health care work for myself.

I still don’t have an epilepsy nurse.

In comparison to some countries I obviously feel grateful to have health care at all.

This is not everyone’s experience of epilepsy care in Britain, but it is mine.

1) http://rosewinelover.com/2013/02/25/you-wont-be-seeing-frank-any-more-hes-no-longer-here/

2)http://publications.nice.org.uk/the-epilepsies-the-diagnosis-and-management-of-the-epilepsies-in-adults-and-children-in-primary-and-cg137

3)http://publications.nice.org.uk/the-epilepsies-the-diagnosis-and-management-of-the-epilepsies-in-adults-and-children-in-primary-and-cg137/key-priorities-for-implementation#management

4) Epilepsy Action http://www.epilepsy.org.uk/

5) http://www.bbc.co.uk/news/health-21649307

6) http://www.bbc.co.uk/news/health-21703667

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4 comments on “Epilepsy, the National Health Service and the post code lottery – A Tale of Two, or Three or Many Postcodes

  1. Thank you for writing this, and for linking back to my story. When I was living in Cheltenham I didn’t even have a neurologist – my doctor thought he knew it all. I never had an EEG or MRI either.

    It’s only since I arrived here in Chelmsford that I recieved proper care. Not only for my epilepsy, but a myriad of other serious medical issues that could have proved fatal were also uncovered. Leaving my hometown actually saved my life.

    I think it’s wrong that care differs in quality all over the British Isles – never mind from county to county. The government should be giving the overloaded NHS an overhaul – not taking its funding away 😦

    • hi! thanks for your feedback, what a terrible experience! i sympathise completely. it is very sad that health care varies so much and that where you live could make the difference between living and dying. I was really glad that you managed to get the diagnosis that saved your life. I don’t think our government has got the hang of systems theory. It seems more interested in divide and rule, you are quite right about funding.

  2. Hi my dear
    A very excellent post. It is true about wanting to find a way to blame. It really is a bigger problem where blame lies. It starts at the top and somehow filters down. The trickling effect and it takes a whole lot of people with it that suffer when they don’t need to. You are a good writer and have helped me understand more about epilepsy than I would have otherwise known.
    Take care sister
    TJP
    Yisraela

    • hi there Yisraela! thanks for stopping to feedback to me about this post. The trickling effect is very frustrating. I expect from your own experiences that you understand this well. Thankyou for complementing my writing! Take care also sister
      TJP
      Ruth

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