Monday, 2 September 2013

Carousel: “You’ll never walk alone”. Where and from whom do you get most support?

Where and from whom do you get most support? Your GP? Friends? Migraine Charities? How do you find comfort in knowing you’re not alone?


Just this past Friday The Migraine Trust released a statement (or rather a warning) that migraine sufferers in the UK do not receive enough help and support. There are an estimated 8 million of us in the UK alone, isn’t it time we got the help we needed?

Some GP’s are incredibly understanding and knowledgeable about migraine. Others, sadly, are not. But it’s not their fault – most GP’s only receive about an hour’s training on migraine and headache disorders. No wonder I often think that even I know more about my condition than some of the GP’s I’ve seen over the years. It’s’ such a shame because THERE IS SO MUCH that can be done to help the majority of migraineurs – and if GP’s knew about these techniques and treatments there would be a lot less needless suffering. Personally, I believe GP’s do not refer chronic patients to migraine specialists, or clincs, frequently enough because a) they are unaware of how much help specialists can offer patients and b) there simply aren’t enough migraine specialists to go around in the first place. And let's not get into the restrictions and money issues about local PCT's.....

Where can we get help & support?
If you do happen to see a GP and feel uncertain of the treatment you’re receiving, help is at hand. Last September NICE issued guidelines on the treatment of Migraine and Headache – it is available for all to see and is pretty easy to understand. In August NICE also published  Quality Standards for Headaches . According to The Migraine Trust these will: 

The NICE Quality Standards for headache will enable: 
  • Health Professionals to make informed decisions about the best treatment and care for headache and migraine sufferers.
  • Headache and migraine patients to find information about the quality of services and care they can expect.
  • Service providers to examine the quality of the service they deliver and assess improvements.
  • Commissioners to commission only high quality and cost effective services.  Quality Standards will inform payment mechanisms and incentive schemes under the new commissioning system.

You can also get in touch directly with The Migraine Trust if you have any further questions. They have evidence based fact sheets, free, on-line, plus a free advocacy andinformation service. The National Migraine Centre also has a fabulous website and if you don’t feel you’re getting anywhere by yourself, or with your GP, you can book yourself in for an appointment with a migraine specialist. You don’t need a GP referral and you pay by donation. I do believe, however, that building a relationship and understanding with your GP, is vital and can help a lot. But you just might have to help them help you!



I often refer to the National Migraine Centre as migraine mecca. The moment I walked up the cobbled steps in Charter House Square, London, I felt at home. I felt I had finally found a place and people that totally understood and supported me. I think I pretty much sobbed my way through my first appointment as I was just so grateful to see a Doctor who could explain, help and empathise. And who, quite simply, believed me! I had seen so many different specialists, I’d wasted about 5 years being told I was depressed, the pain was ‘in my mind’, it would go away eventually and my condition was steadily deteriorating as a result. The key lesson I gained from my appointments at the National Migraine Centre, was how to live with migraine, not just how to treat it effectively. Triptans had been shoved in my hands a few years earlier but no one had ever taken the time to explain that I shouldn’t take too many, how the life cycle of some triptans and migraines work etc. I was taught tips and tricks that totally changed my understanding of the condition I was living with. My GP also received detailed letters about my condition, which meant I'd get the care I need at the primary level too. 

So, to all those in the UK who don’t feel they’re getting the help and support they need – demand it. You deserve it. It’s your right. The Migraine Trust and the National Migraine Centre and the patient run charity, Migraine Action, are there for you. Don’t suffer needlessly. As they sing in Rodgers & Hammerstein's beautiful musical Carousel, 'You'll Never Walk Alone', because you're not alone. P.S I find it impossible to listen to that song without crying, it's so beautiful. I'm sure all Liverpool supporters agree. 

OK, end of rant.

Below are a list of my favourite blogs and other sourse of information on migraine and chronic pain conditions that I have dipped into over the years. To return to the blog promt, I can not underestimate how comforting and amazing it is to talk to other migraineurs. If you’re not on twitter, sign up now, there is an incredibly supportive community there. I’ve found more support and understanding and advice through ‘on-line’ twitter friends than I have with ‘real-life’ friends…if that makes sense. The Migraine Monologues Book Club is also a huge source of joy to me. I not only learn more about migraine but love discussing the books and other facets of living with migraine, with the brilliant members on-line. People who go through what I go through. If you want to join us, please do. You don’t have to walk alone through life with migraine. 


Other resources and links I use in no particular order: 



And that's just the start. With all this (reliable) help and information available, together, we can beat migraine! 


#morethanjustaheadache
#maw2013

This blog is all part of a Migraine Awareness Week Blog Challenge to raise awareness and increase information about migraine. To find out how else you can get involved this week check out the Migraine Trusts' MAW page. 
Tomorrow:
Little Shop of Horrors: "Feed Me, Seymour": What comfort foods do you reach for when you have a Migraine or Headache attack? Do you follow any special eating plan?

2 comments:

  1. The National Migraine Centre sounds AMAZING! I think the nearest to that kind of specialised support I've been offered is chronic pain type counselling which is all well and good but....totally different. And not condition specific. So yeah, not the same at all! I'll definitely bear it in mind for the future. Great sounding resource :-)

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  2. I also cried at my first every appointment at the MNC. It was relief. And the fact Dr Lewis asked me if my migraines were affecting my relationship :-(

    I wholeheartedly support your advice. If it wasn't for you or Fran I wouldn't know about the NMC and the wonderful community that exists online.

    Thank you so very much xx

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