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 18^th 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

Coconut oil for dementia and alzheimers disease – Natural News.com

http://www.naturalnews.com/039388_coconut_oil_dementia_Alzheimers_disease.html

Really interesting information about coconut oil and inflammation caused by oxidative stress in the brain.

Thanks to which ever blogger it was that put up a link to Nautral News – I can’t find the origional link but thanks and please identify yourself to me so I can credit you!

fire in the blood.

The Earthbound Report

This week has seen some excitement over the possibility of the first case of someone being ‘cured’ of HIV, generating a lot of hope and expectation for future treatments. This week has also seen a little attention on the story of HIV drugs in Africa, which is a much darker story. It’s been told for the first time in a new documentary, Fire in the Blood, which is currently screening in Britain.

It’s the work of Indian-Irish historian and filmmaker Dylan Mohan Gray, and it tells the story of how the pharmaceutical companies blocked the sale of cheap anti-retroviral drugs in Africa. It protected their profits, but caused an estimated 10 million unnecessary deaths. That’s a crazy number of deaths that could have been avoided. You would need to add the Holocaust and Stalin’s gulags together to match it. It’s little wonder Gray refers to it as ‘the…

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very interesting and relavent findings on gene expression and mental health.

deemagclinic

The biggest study yet into genetics and mental health has come up with a stunning result: The five most common mental illnesses — autism, attention deficit disorder, bipolar disease, schizophrenia and major depression — all have a common genetic root.

The finding, published in the journal Lancet on Wednesday, may eventually lead to a complete rewrite of the medical understanding of the causes of mental illness.

“We have been able to discover specific genetic variants that seem to overlap among disorders that we think of as very clinically different,” Dr. Jordan Smoller of Massachusetts General Hospital in Boston, who led the study, said in a telephone interview.

The study does not explain every case of psychiatric disease, the researchers stress.

“We think this is one tiny fraction of the genetic component of these disorders. They involve hundreds and possibly thousands of genes,” Smoller said.

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Britons beware of changes to the NHS. A Time Magazine article on the problems with private health care accross the pond.

Neurological Rock Stars 2 – Parkinson’s Nautrally blog by Fred Phillips

http://fredphillips.wordpress.com/articles/healing-parkinsons-disease-naturally/#comment-615

Please follow the link to Fred Phillips Blog, and inspiring story of treating parkinson’s nautrally. Fred has taken the time and care to write about how he is using diet, yoga, meditation and emotional healing to treat his Parkinson’s disease symptoms.

His diet advice in particular in relation to inflammation and the relationship between gut and immune system function are really useful (to me especially! 🙂 ).

Fred has a very good understanding of the physiology of the body and how it all inter-relates.

Fred has also written a book about healing.

Fred is also a KARATE TEACHER!!! 🙂

 

Epilepsy and Exercise Study and Epilepsy at the Olympics – ‘Exercise is good for the brain and the heart, and everything else’ Dr. Elinor Ben-Menachem from Göteborg University.

This week I was listening to the ETP (1) blog cast and was really inspired by the post on the work of DR Elinor Ben-Menachem on her project on exercise and epilepsy as discussed with Dr Joseph Sirven.(2)

Topics discussed:

Raising seizure threshold by exercising more.  Low cardiovascular fitness related to 79% higher risk of developing epilepsy after age 18.

Exploring the importance of exercise before the age of 18 in the importance of prevention of health problems in later life, including epilepsy. The possibility that exercise may be an inexpensive way of managing seizures is also mentioned.

Her message is that exercise is ‘good for the brain and the heart, and everything else’.

Full transcript (3)

Also of interest Dr Ben-Menachem’s Hot Topics Symposium Modulators of Epilepsy:  The Influence of Lifestyle and Environmental Factors (4)

This research presentation is interesting because it covers neuroplasticity, the hippocampus, the role of exercise in preventing central nervous system diseases, cardiovascular fitness and the future risk of epilepsy. Hormones are also discussed. The Hypothalamic Pituitary Testes and Ovarian axis is covered, together with progesterone treatment trial.

The hypothesis is: cardiovascular fitness could modulate brain plasticity by increasing amounts of circulating growth factors or beta endorphins or some other neuroactive molecule.

Dr Ben-Menachem discusses the Olympic silver medallist cyclist Marion Clignet (5) who was not allowed to race for America at the Olympics so she cycled for France instead. Marion has written a book called ‘Tenacious’ with a fellow sportsman yachtsman Benjamin Hovey who also has epilepsy see here (6) (7)

Further athletes with epilepsy at the Olympics can be found at (8) The Epilepsy Institute of North Carolina blog. Worthy of note in this blog post:

‘Dai Greene played football (soccer for us since he’s British) when he was a teenager.  He had to quit playing soccer in his late teens due to a growing spurt that causes knee pain.  It is called Osgood Schlatter Disease.  He now runs the 400m hurdler for Welsh and Great Britain.   Dai had his first seizure at seventeen.  He doesn’t take any medication; instead he doesn’t drink any alcohol and makes sure he gets the right amount of sleep needed.  Several medals have been won and he will be Captain for the Great British Athletics Team.’

This is very promising from the point of view of the possibilities of using alternative means to control seizures and giving people options beyond medication.

Dr Ben-Menachem has also written a book called Case Studies in Epilepsy (Case Studies in Neurology) [Kindle Edition] (9) This book looks very interesting and although it is out of my price range the initial ‘look inside’ was very promising so if you can find it at a library resource it may be very useful.

Dr Ben-Menachem covers barriers that prevent people with epilepsy from exercising such as; over protection, social isolation, low self-esteem, anxiety and depression. She mentions that weight can be a problem.

I would add one other problem area facing people with epilepsy and exercise which is ‘stigma’; either because of society, weather it is because of lack of understanding of epilepsy or ignorance of what epilepsy is and that it is important to exercise no matter what the health problem.

Exercising in groups is recommended.

Some useful strategies for safely exercising with epilepsy are covered in this blog post from Rosewinelover epilepsy action media volunteer;

http://rosewinelover.com/2013/01/04/epilepsy-and-fitness-resolutions-for-2013/

For myself I can say that without exercise my personal seizure management is extremely challenging because I experience so many positive benefits from exercising. (10)

Happy Exercising Everybody!

1)http://www.epilepsy.com/epilepsy/hallway_2013_podcasts?utm_source=Epilepsy+Therapy+Project&utm_campaign=535342f2b3-Epilepsy_News_2_20_13&utm_medium=email

Epilepsy Therapy Project

2) http://www.gu.se/english/about_the_university/staff/?languageId=100001&userId=6850

3) http://professionals.epilepsy.com/pdfs/Exercise%20and%20Epilepsy%20-%20HC%20-%201_9_13.pdf Epilepsy Therapy Project Blogcast Transcript

4) http://www.hope4harper.com/wp-content/uploads/2012/12/The-Influence-of-Lifestyle-and-Environmental-Factors.pdf

5) http://en.wikipedia.org/wiki/Marion_Clignet

6) http://marionclignet.com/

7)http://marionclignet.com/tenacious

8) http://epilepsyinstitute.blogspot.co.uk/2012/07/epilepsy-and-olympics.html

9) http://www.amazon.co.uk/Case-Studies-Epilepsy-Neurology-ebook/dp/B00A8GYWBO

Case Studies in Epilepsy (Case Studies in Neurology) [Kindle Edition] Hermann Stefan (Author, Editor), Elinor Ben-Menachem (Author, Editor),Patrick Chauvel (Author, Editor), Renzo Guerrini (Editor)

10) https://epilepsymeandneurology.wordpress.com/2012/12/26/what-do-epilepsy-autism-hormones-sleep-music-meditation-exercise-have-in-common-the-hippocampus-and-neurogenesis/

How do beliefs interfere with and prevent recovery? Is there a happily ever after to your fairy story?

I have been recovering from epilepsy for a long time and have become interested in reading a great deal about belief in relation to health and wellbeing. Other bloggers have touched on it recently, for example an excellent post from the http://workitwell.wordpress.com/2013/01/18/what-are-your-core-beliefs/

was titled ‘what are your core beliefs’.

Belief is a big word with few letters. Thinking about it might bring up ideas about your-self, others, religion, believing in something not believing in something, maybe even right and wrong.

So at what stage in your life did you start asking questions about the tooth fairy and Santa Clause?

Why do we believe what we believe and at what point do we begin to ask questions about these beliefs?

In the context of religion for example, asking questions about faith could be a welcome part of the discussion within a place of worship. Spiritual leaders may encourage debate about beliefs and use them as an opportunity to Shepard their flock to safer pastures.

However examples of how much resistance has been encountered in relation to changing beliefs can be found throughout history.

One such example of this would be the geocentric model (1) of the earth as the centre of the universe, and the resistance faced by Galileo Galilei (2) when he tried to present his case that things might be different.

Without reconsidering and changing beliefs such as the Earth as the centre of the universe, humans may never have made it to the moon. We could still be trying to leave the ground instead of taking into account new physics to take us upwards on an evolutionary path towards new technologies.

Can you imagine what would have happened if Galileo had suggested that you could communicate with people the other side of the world on an electric light box?

Bearing this in mind, how difficult is it for us to challenge or own beliefs and those held by people who are charged with our health care?

This type of difficulty is well illustrated by the distressing experience of Well Call me crazy here:

http://wellcallmecrazy.wordpress.com/2013/02/16/the-irony-of-it-all/

Having had experience of how difficult it can be to hold the ‘reflective mirror’ up to myself at what point do you question the beliefs of your doctors?

It is a sad fact that the men in white coats are often given great power by us. We look to them to answer our health problems but sadly don’t question their fallibility, and even if we do we can easily be put off by the sheer dazzling power of the white coat complex.

‘With great power comes great responsibility’ (star wars), which is sadly often abused. Pharmacy is big business and there are many millions of billions of motivations why modern medical culture doesn’t encourage us to ask questions about what is in our medication, how does it work, and what is it doing to the body?(3)

Great strides have been made by modern medicine in the mechanistic understanding of the body and yet the deities charged with our health care are only human. Why do we not ALWAYS ask what are you putting into my body?

A lot of people like my-self may have had the experience of being told that they would be on medication for life and that they need to be cured.

I prescribed to this belief for many years, despite experiencing side effects that were detrimental to my health and emotional wellbeing. This belief was driven simply by the fact that I thought my doctors new best. As a result of taking medication without question I didn’t get any better and ended up with significantly more health problems as a result.

I can’t remember exactly when I began to question the men in white coats, but I can remember that it was after I began to seek help from a white coat who went against the grain and decided to reduce my medication. The problem was it was turning me into a zombie – and zombies defiantly don’t think for themselves or ask questions.

My white coat was actually not convinced that I was epileptic at the time, so although I have to give him some credit for removing the medication it wasn’t because he had acknowledged that I am epileptic; although this did change once he had removed enough medication to find my EEG.

Whilst alternative therapies continue to be held up as many things (including the last resort for patients such as myself) there are a number of common denominators that I feel are important to mention.

The power of belief.

I have been following the work of Lissa Rankin MD.(4) You may have seen her TedX talk which I have posted at the bottom of the page. The placebo and nocebo effects are covered and Lissa speaks about the work of the institute of noetic Sciences (5) spontaneous remission project.(6)

Lissa’s blog has recently run a 4 part series http://lissarankin.com/is-it-your-fault-if-you-cant-heal-yourself-part-1 which asks is it your fault if you can’t heal yourself? This question in particular is relevant to recovery from ill health and was sparked as a result of the suggestion that we perhaps may be able to heal ourselves without medication and/or despite it.

Lissa’s work is an encouraging step towards introducing the notion that the body and mind may be intrinsically woven together in a more complex way than is currently outlined by modern Big Pharma medicine.

Would now be an appropriate time for Western medicine to start asking questions about how the mind is woven into the fabric of the body? Or is it too much of an expensive and painful prescription to swallow for Big pharma?

For me I it is not too late. I have had the lights turned on. The fog has lifted, and now I can ask questions.

For years I have been labouring under the impression I can’t learn, but last year I went to college and got 88%, 84% and 69% in exams in the same month as having seizures all month. I have spent this week twitching and seizing but I can still think.

The question had to be how?

All the time I couldn’t think I believed it was because I have epilepsy.

Now I have come to the conclusion that this isn’t so. I couldn’t think because I was on vast quantities of mind bending prescription medications.

I have had to address my core beliefs.

It has been very challenging and I still haven’t had time to integrate this new view of myself into my mind and body.

Socially epilepsy can be a very stigmatising health problem to experience. My experience has made me question how much society, attitudes, and beliefs play a part in recovery.

Thankfully I feel like I have been given a second chance. Realising that I can think and study has meant that I can go back to college to study with the support of my family.

Maybe one day we will all believe that the body, mind and environment are linked and that they are all as necessary for health as each other; just like we can now see we are only a small planet in a solar system in a universe that doesn’t revolve around us – or does it?

This post below illustrates how a different world view can influence recovery, and how diet is important to blood chemistry.

http://freeupliftingbooksonline.wordpress.com/2013/02/15/cup-of-green-juice-for-life-eating-light-with-michiyo-mori/

Why do we consistently reach for pills when diet can be so powerful?

It is sad to think that so many people may never know who they are without medication. I am glad that I found out.

http://www.youtube.com/watch?feature=player_embedded&v=LWQfe__fNbs

Lissa Rankin MD TEDX

1)http://en.wikipedia.org/wiki/Geocentric_model#Historical_positions_of_the_Roman_Catholic_hierarchy  Geocentric model

2) http://en.wikipedia.org/wiki/Galileo_affair

3)http://www.alternet.org/story/147318/100,000_americans_die_each_year_from_prescription_drugs,_while_pharma_companies_get_rich

4) http://lissarankin.com/is-it-your-fault-if-you-cant-heal-yourself-part-1

5)http://noetic.org/library/publication-books/spontaneous-remission-annotated-bibliography/

6)http://noetic.org/research/program/consciousness-healing/

Neurofeedback and Optimal Brain Function

Thank-you to http://ahmritanaturalmentalhealth.wordpress.com/ for this very interesting guest post. 🙂

Neurofeedback is a treatment which has evolved from Biofeedback. Many of you would have heard about this concept:

“…is a process that enables an individual to learn   how to change physiological activity for the purposes of improving health and   performance. Precise instruments measure physiological activity such as   brainwaves, heart function, breathing, muscle activity, and skin temperature.   These instruments rapidly and accurately ‘feed back’ information to the user.   The presentation of this information — often in conjunction with changes   in thinking, emotions, and behavior — supports desired physiological   changes. Over time, these changes can endure without continued use of an   instrument.” Three   professional biofeedback organizations, the Association   for Applied Psychophysiology and Biofeedback (AAPB), Biofeedback   Certification International Alliance (BCIA), and the International   Society for Neurofeedback and Research (ISNR), arrived at a consensus   definition of biofeedback in 2008.Read more here http://en.wikipedia.org/wiki/Biofeedback

The concept of Biofeedback has been practised for time immemorial by Yoga and Pranayama students and masters. Here in the west it has developed to its current form since the late 50’s and was very popular in the 80’s. Since then it has sadly somewhat disappeared from the popular radar again, as do so many worthy and non invasive natural therapies. Mostly due to funding issues in the ever ongoing effort of pharmaceutical companies to suppress what would outshine their products.

But back to topic – Neurofeedback – “Neurofeedback is a type of biofeedback that uses electroencephalography or fMRI to provide a signal that can be used by a person to receive feedback about brain activity.”

Research so far has been working in particular to prove its worth as a treatment of epilepsy, autism, headaches, insomnia, addiction problems and more, but its benefits can be felt by anyone who has suffered an emotional trauma.

http://en.wikipedia.org/wiki/Neurofeedback

However, you do not need to be diagnosed with a medical condition to benefit from this treatment, as it is designed to optimize brain function.

Like many I became aware of the biofeedback movement in the late 80’s, but never did much with it. By chance a friend of mine gave me a rather large voucher for a bookstore in 2007. One of the titles I bought was:

“The Healing Power of Neurofeedback”, (2006), by Stephen Larsen Ph.D. Healing Arts Press.

Which humbly and quietly sat in my bookshelf for three years, until I was hunting for something new to read during semester break. What I found in this book had me totally spell bound, a treatment called LENS Technique, developed by Len Ochs.

http://www.ochslabs.com/

After several hours of googling, I found a practitioner in Melbourne, who had recently migrated from Germany. I booked myself in for six treatments, which was explained to me as a usual course of treatment. Even though, the cost was not outrageous, I could instantly see, that it would be out of reach of exactly the majority of the population needing it – no medicare funding!

At the time stress levels in my life were approaching frantic on the stress meter, due to work, study and family commitments. Sounds familiar doesn’t it? Well I was turning into a bit of a sleep deprived grouch 🙂

What I experienced even after the first treatment was sensational  (and lasting)– I became acutely aware of all the tension in my body; that I was holding a pen like a sword, my shoulders had taken up position at ear level and my breathing was shallow. By the time I got home after an hours city driving, I was in total and utter relaxation – of the ragdoll kind, but aware and alert, I felt fantastically at peace. I would recommend it to everyone!

Since, I found another practitioner of Neurofeedback – Dr. Shum, the Psychiatrist in Australia who has also helped develop Subconscious Freedom Technique

http://au.blurb.com/search/site_search?search=Subconscious+Freedom+Therapy

During LENS treatments you sit relaxed in a comfy chair, the practitioner connects several tiny electrodes and you can keep an eye on your heart and breathing rate on a screen. While treatment was going on I was watching a lot of David Attenborough nature documentaries, which I found helped the relaxation tremendously. At no point was there any discomfort or difficulty. The positive outcomes kept piling up, I was able to relax again, sleep better, manage my workload better and generally felt a fair bit more human friendly, which is a big plus when you work in Mental Health.

I would really like to encourage you to get the book, have a look at the websites and contact a practitioner in your area – no amount of me raving on about how greatly it helped me can substitute having your own experience.

Ahmrita’s blog is based at http://ahmritanaturalmentalhealth.wordpress.com/

for further information on nautral mental health many topics.

This is an intertersting blog in particular discussing head injury and the impact/ effects on the brain of aquired brain injury. There are lots of useful links for people with aquired brain injury to organisations who can help.

My head injury

I’ve just read some more news about Head Injury and Dementia.

We know that victims of head injury can become very vulnerable to brain tissue damage depending on the severity of the damage. Most often than not thinking, remembering, understanding, (expressive and receptive dysphasia), along with behaviour and cognitives combined are related to dementia……….. cont

Here is the article.

http://www.emedicinehealth.com/dementia_in_head_injury/article_em.htm

 

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