Have You Felt Supported By Your Neurology Team?

Today I am asking an importing question, have you felt supported by your neurology team? From your diagnosis, through to the altering medications, the life changing moments, and even the highs and the lows that epilepsy brings.

As epilepsy is a life long condition, your neurologist becomes an important part of your life.

You would expect your neurology team to provide you with all the help and support you require regarding epilepsy, however not everyone receives it and I have been one of those people. Today I have decided to share my experiences with you.

This has taken a lot of consideration,  as I wanted to remain as positive as possible about epilepsy, but I realised that if I am open about my experiences I could potentially help other people, and this is what this blog is all about.

 

My Experience of Neurology Teams

Thankfully, I have great memories of my first neurologist. She provided me with all the advice and guidance I could need, in one situation, she even brought in one of the top UK paediatric neurologists to see me. I couldn’t fault the care.

I had a neurologist who asked if I was learning to drive when I was 17, this was his reply when I told him I was learning;

You shouldn’t be learning to drive, your epilepsy isn’t controlled! I demand that you hand your provisional licence into the DVLA at once!… (few minutes gap as no one was talking) I won’t be upset if I were you, I have to tell taxi drivers and bus drivers that they can no longer drive every day, and driving is their living, this is nothing to you!”

So as you can imagine I left that appointment upset. The moment I turned 16 healthcare professionals became obsessed with topics such as pregnancy while never discussing the subject of driving. (I wouldn’t have had lessons otherwise). But a decade later I have no children and I can legally drive 🙂

I will confess that I wasn’t exactly the perfect patient either, up to this point not one medication had worked for me. It’s frustrating when medications begin to alter your mood, increase your weight and damage other aspects of your health for little or no gain. So I decided to see how different my life would be like medication free.

I soon had a new consultant who was overly anxious when she discovered that I was medication free. I consider myself to have very mild epilepsy with perhaps one seizure a year, and although I appreciate that I was at risk without medication when I wasn’t taking medication I felt the same, perhaps better, because I had freedom from side-effects and saw no increase in seizures.

My neurologist would frequently discuss the seriousness of my condition even mentioning that I could die if I wasnt on medication.

I can remembering thinking that if someone has cancer and decides to decline treatment, the doctor respects their decision. But this situation felt pressured…

I was about 18, I was home alone, still medication free, and my support nurse called me. It was obvious that the intention of her call was to get me on medication again. I explained to her that I was doing well and was concentrating on a healthy lifestyle. She told me to stay away from ‘stupid’ ideas (which she apologised for) and later went on to explain to me that she has had ‘patients who have died from this’. I urged to her that my epilepsy is thankfully minor and always produces plenty of notice and auras. Her reply, ‘what if it doesn’t?’  Eventually, I pitifully agreed to begin medication again, hung up the phone and cried. I felt like a push over.

After two years of trying various medications, I found on that thankfully worked.

After my consultant were pleased that my medication was working, I received a letter signing me off from their care.

 

Why did I share this story?

I know I don’t have the most positive experience with some of my neurologists or support nurses, and I have not written this article to slam neurology departments. I fully appreciate that the hospital had to be realistic and had to provide the information related to my condition, and I am grateful for the work they do, but I sometimes wonder how different the outcome would have been if they had been slightly more tactful and resourceful.  There were times where I would leave appointments upset, reaching the car and beginning to sob, but thankfully my mum was there to give me the best encouragement, support…and hugs 🙂

If you have a child, relative or friend who is experiencing similar I think it’s important to place as many positive thoughts in their mind, telling them that you are always there to talk, and reminding them of all the amazing things that they can achieve.

 

How Supported Have You Felt By Your Neurology Team?

You might think that the neurology team are not supposed to be there to support you, just to give you medical and professional advice.

I however think that having a diagnosis of epilepsy is a life changing and lifelong one which requires support and positivity where possible.

I would be interested to know different people’s experiences and views of their neurology team and how supported they have felt.

Thanks for reading,

Becky 🙂

 

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The Humanimal Trust: Enhancing My Outlook on Medicine

Many of us have medical complaints or take medications, but how often do we think about the bigger picture? 

Did you know that there is a charity that is fully committed to improving how the industry is currently run?

A few of years ago a family friend of ours became a vet and got a job at a famous veterinary practice called Fitzpatrick’s Referrals. If you havent heard of Fitzpatrick’s they have their own TV show called The Supervet, which shows pioneering surgery and treatment for animals.

Before my friend worked there I had honestly never heard of the place, and initially I was tuning in to see if he was on TV – he wasn’t. I think I saw him twice. But it didn’t matter, because I have now became addicted to the programme.

The practice boasts a brilliant and dedicated team and it is clear that for all staff, their job is their passion. 

Yes there can be sad moments, but you always know that they give their best and do everything that is humanly possible in order to improve an animal’s quality of life.

The show follows the practice’s owner Professor Noel Fitzpatrick, Noel is like one of those rare teachers you might have had in school with contagious enthusiasm for their subject. He has so much passion about his profession; it makes everyone else just as equally absorbed and you soon realise you have been learning loads while watching the show, to the point where you find yourself talking to friends about stuff like orthopaedics over a cup of coffee!

Noel-Fitzpatrick-Web-300x300

Professor Noel Fitzpatrick, founder of The Humanimal Trust

After discovering about Fitzpatrick’s, and adoring the whole ethos of from ther work to the love and hope that they provide to every patient and family that reaches them, I soon found that there was also a charity, founded by Noel Fitzpatrick. You would expect a charity that’s created by a pioneering veterinarian to be focussed on animal health but it’s not. It’s called The Humanimal Trust, and it focuses on humans and animals equally through the concept of one medicine:

 The theory is quite simple:

Human + Animal = Humanimal

One medicine is the idea that humans and animals will be treated equally in the field of medicine.

There are basically 3 main parts to the ethos of The Humanimal Trust and their concept of one medicine:

  1. Clinical communication between vets and doctors.

‘Everyday there are advancements and research breakthroughs in both veterinary and human medicine, yet at present neither profession collaborates to share their information that would progress treatments and procedures using regenerative medicine for the benefit of humans and animals simultaneously.’[1]

A couple of weeks ago, I listened to a BBC Radio 4 interview that Noel had taken part in, it discussed the topic of: ‘Should Doctors and Vets Work More Closely Together?’, an audience member mentioned that while working in Australia as a doctor, he and his colleagues learnt that vets had solved a rare medical issue that had been baffling them, the solution was discovered to be a simply a lack of copper absorption. The veterinary community already knew about it and had been treating sheep for it.[2] communication meant that the problem was easily solved. 

When I first heard that The Humanimal Trust wants to improve communication, I thought about how beneficial it could be in sourcing medical solutions and treatment for so many people.  young-1835731_1920

As many of you know by now I have epilepsy, and I can remember thinking that if there was a vet somewhere in the world, who had perhaps made immense progress towards epilepsy which could be of benefit to humans, I would like to know about it, and I think many other people would feel the same.

  1. Medication for humans and animals that is ethical

Ethics in medicine is an important topic, and The Humanimal Trust is addressing this.

Currently, if we have any medication or implants they have been tested on animals in order for them to reach us, meaning a perfectly healthy animal has sacrificed its life for our medicine.

In 2015 approximately 4,300 dogs in the UK sacrificed their lives for human medicine, in the USA, that number was nearer 50,000 [3] . These are shocking statistics, and since I have been a child I have always been concerned about animal welfare. I have never been content with the fact that animals have been used to test drugs, and that our only consolation is that it’s safer than endangering human life. But, there could be a possible solution.  The Humanimal Trust proposes that with the diseases and conditions are practically identical in humans and animals, medications and implants could be trialled on animals that are actually unwell, and then co-operate with pharmaceutical companies, which would then produce more ethical medications. [4] This would be benefiting both humans and animals.

Human medicines are huge business, so there is a risk that pharmaceutical companies may see more profit in the way they currently run business. I once sat next to my GP as we went through a list of generic and branded medications that I could have. I saw exactly how much they were costing the NHS to purchase, and the prices were eye-watering.

  1. Clinical Trials

A vital part of The Humanimal Trust is that they also conduct their own clinical studies; The Trust is potentially the only charity of its kind in the world that is funding clinical research in animals and humans at the same time.[5]

It’s understandable that we all want cures and treatments for our illnesses, but there other problems that can also arise without warning, for example MRSA and Ebola. These bugs are the same in humans and animals, so what’s the best plan for when a superbug strikes? Especially as it’s no news that healthcare professionals can sometimes overprescribe antibiotics:

‘You don’t care about MRSA until it’s in your child and yet The Humanimal Trust is funding a project to look at bacterial resistance with over prescription of antibiotics, it’s the same bug. We have DNA mapped, every bug that comes into my practice it’s the same bug that you or your child would have. Why are we not doing a study in parallel? If doctors are going to be over prescribing antibiotics and vets are going to be over prescribing antibiotics,…we are in a mess.’ (Noel Fizpatrick)[6]

 

So that’s the Humanimal Trust! 

Im grateful for learning about Fitzpatrick Referrals through The Supervet, I believe that they are more than just a referral practice. They show unconditional love and hope to everyone regardless of whether they are animal or human.

 I have been equally appreciative to discover the amazing charity of The Humanimal Trust as the charity also provides that same love and hope with the pledge to benefit both humans and animals.

I truly believe that The Humanimal trust has the potential to change the world of medicine, and benefit so many lives (both human and animal!)

Before I knew about The Humanimal Trust I always believed that our health care system was pretty good, and I couldn’t think of much that needed improvement. I’ve now realised that things could be improved and great things could be gained. 

The most important thing that we can do is support them. Here is a link to their website if you would like to know more.

If you would just like to spread the word, feel free to share this article.

 

Thanks for reading!

And thank you to The Humanimal Trust for your support with this article 

Becky 🙂

 

[1] http://www.humanimaltrust.org.uk/ 05/2017

[2] http://www.bbc.co.uk/programmes/p04zc7ws ,05/2017,  The Evidence: Humans and Animals. Should Doctors and Vets Work More Closely Together? 18:37

[3] https://www.youtube.com/watch?v=YF0FAI0eAKc 05/2017 Professor Noel Fitzpatrick at The Hay Festival 2016

[4] http://www.bbc.co.uk/programmes/p04zc7ws 05/2017, The Evidence: Humans and Animals. Should Doctors and Vets Work More Closely Together?

[5] https://www.youtube.com/watch?v=6eoeRRcIzt8 05/2017, The Humanimal Trust, Sharing the Message

[6]http://www.bbc.co.uk/programmes/p04zc7ws 05/2017, The Evidence: Humans and Animals. Should Doctors and Vets Work More Closely Together?

[7] pictures courtesy of The Humanimal Trust: http://www.humanimaltrust.org.uk/ 05/2017