Wednesday, 22 August 2012

Work Capability Assessment, ESA & your chance to have your voice heard!

*****Warning, this is a serious post. Therefore, I advise you to imagine Judi Dench is reading this to you.*********

Many of those suffering with chronic migraine, which renders them unable to work, may not realise that they're most likely eligible for Employment and Support Allowance (ESA). Provided, that is, they make it through the incredibly arduous process that includes the dreaded Work Capability Assessment (WCA). As it stands, WCA is not exactly migraine friendly. It is also worth noting that the BMA (British Medical Association) voted to demand that WCA cease with "immediate effect.

I'll be writing soon in more detail about ESA & WCA,  providing tips and hints, but today I wanted to let you know that the Migraine Trust are asking for anyone who has personal experience of the WCA process to "answer a call for evidence"! The Department for Work and Pensions (DWP) has commissioned Professor Harrington to undertake a 3rd independent review of WCA. The review calls for both individual and collected responses, i.e that of an organisation. 

So, the Migraine Trust are strongly urging anyone with experience to a) respond to this by the 7th of September and b) also forward or call Hannah Verghese (Advocacy and Policy Manager) with your  responses so they can be included in the Migraine Trust's overall reply. This needs to be done by Wednesday 29th of August. 

For more information on this process and to contact Hannah click below:

Many charities and individuals have been working tirelessly behind the scenes to encourage this much needed call for evidence and change to the descriptors, which means the questions that get asked in the actual WCA to 'assess' whether you're 'fit to work'. I strongly urge you all to follow Sue Marsh's incredible blog Diary of  a Benefit Scrounger to keep up to date with what's happening. Sue posted a blog today with the latest suggested changes to the descriptors. You can post comments on Sue's blog and she will pass them on to the relevant channels. You have until the end of the week to respond to the suggested changes. They're definitely a step in the right direction but a lot of work still needs to be done. 

This really is vital for us migraineurs. The questions asked in the WCA are mostly not applicable to our situation - really think about how a migraine affects your daily life, how it disables you - in what specific ways. i.e loss of consciousness, vertigo, side effects of medications, loss of speech, paralysis etc etc etc. Do the questions listed here reflect what you are going through? Migraine is a truly disabling neurological disorder, the most common neurological disorder in fact, so we have to ensure that our rights to the ESA benefit is protected. Therefore, we must respond to this call for evidence. 

Please get in touch with The Migraine Trust (by the 29th August) and with Sue Marsh to get your voice heard. We may not get this chance again. 

Now go back and read this again, imagining that Jude Dench just said all this. 

p.s Please excuse spelling & grammar mistakes I'm just coming out of a migraine! Yes, poor me... 

Useful links summary:

Monday, 6 August 2012

Olympic aspirations and overcoming injury without triggering migraines

As Michael Phelps officially joins his Mer-Family under the sea full time there is now a gap in the aquatic arena. So it was with extra gusto I took to the pool this morning for my swim walk. I can now do about ten swim walk lengths of the pool at my local gym without triggering a migraine. The other day I lost count because I was so busy wondering which sport would most likely win me Gold at Rio 2016. I narrowed it down to Badminton and Ping-Pong. Unfortunately, this meant I went over my allotted ten lengths and duly got a migraine a couple of hours later. Whilst in the pool, however, I did notice that several pregnant women and a Granny overtook me. So even if I successfully petitioned for swim walking to be a sport by 2016 I don’t think I’ll be winning Gold for that. But talking of Mer Folk, today I watched the Synchronised Swimming and I think this could be the sport for me! Last week I asked my Physio and Neck Doctor (Orthopaedic and Sport Physician) what sport they think I should take up when I’m ‘better'. My Neck Doctor actually laughed out loud when I told him about my Olympic aspirations. Meanie. (He probably laughed because he treats some of the GB team.) My Physio was kinder and told me to aim for low impact sports, i.e swimming.

So watching the ‘duets’ today I gleefully noted that several teams danced/swam/water-plies (??) to the theme tune from “Sherlock Holmes” by Hans Zimmer and that one move is even called ‘Evita’. Yes, this could be a sport for me, even though I’m pretty sure this isn’t quite a sport in the vein that Usain Bolt would approve of. I’m also slightly alarmed at the psycho grins plastered on the girls faces and the fact that they put Gelatin in their hair. I wonder if these girls have been deprived of Oxygen for too long. The outfits are also very Strictly Come Dancing, though the team from Brazil had swim suits with human anatomy embroidered on, and swimming caps replicating brains…. but at least it was educational. 

The point is, it’s low impact. I reckon in four years I could get there, as last week, for the first time in over a year, I got back onto 1kg hand weights. Exciting news I know. But it’s painfully slow progress and I did think my arms were going to fall off. Like swim walking I do one rep too many, or one rep with a shoulder muscle out of place, and a migraine creeps in, but I know it’s the only way to build up my stamina and get back to living a more ‘normal’ life. i.e be able to sit at a computer and type for more than two hours a day; quite crucial for someone who wants to be a Writer. As with everything migraine related there is never a quick remedy.

Seriously though, I’m finding the Olympics, especially Jessica Ennis’ abs, most inspiring. Mary King, aged 51, won Silver for GB in the Team Eventing which I was lucky enough to attend with some friends. None of us had ever watched Eventing, especially Dressage before, and we surmised it’s essentially gym for horses. But Mary King is particularly inspiring because not only is she 51 (still time for me yet) but she actually broke her neck in 2001. When she went to hospital she was initially told she has just suffered whiplash! I was told exactly the same after my car accident, obviously my spine fracture was much more minor, and took 13 years to discover. But look at the come-back she made – my synchronized swimming career is not looking so ridiculous now, is it!

For anyone with an injury, and especially those of us with migraine, getting the balance right with exercise is incredibly tricky. I’ve written here before about my perilous experience with exercise but today I received the newsletter from the National Migraine Centre in London which had a short article by their Medical Director, Dr Giles Elrington, offering great advice for migraineurs wanting to try and gently get back into an exercise regime. This might not get you to Rio 2016 but it will get you off the couch. Meanwhile I'm off to buy some nose clips and Gelatin. 

With the NMC's  kind permission I'm sharing Dr Elrington's advice with you below: 

Has the Olympics inspired you to dig out those old trainers?

Worried that it might leave you vulnerable to migraine attacks?

Dr Elrington shares his thoughts. 

Exercise is often recommended as a strategy to reduce the frequency of migraine attacks; however, the supporting evidence is limited to anecdotal reports and results
of small-scale observational studies.

The potential advantages of exercise for migraine prevention are numerous, particularly if it enables reduced drug intake. Exercise obviously has other important health benefits too such as improving physical strength, fitness, sleep and depression as well as reducing blood pressure, cholesterol and weight. Disrupted sleep, depression, heart problems and obesity have all been linked to migraine, so exercise can be an all- round migraine deterrent if you go about it in the right way.

Many migraineurs are concerned about starting an exercise programme because they feel that it can actually cause attacks. Certainly,  many have found that unaccustomed strenuous and intense exercise can precipitate migraine so it is important to be aware of your own fitness levels.

Start your exercise program gradually and build up over several weeks. Always warm up and cool down, stretching before and after to prevent muscle tension.  Ideally, exercise at the same time every day, so your body and your brain beccome gradually accustomed  to regular exercise.   

Dehydration and a drop in blood sugar levels is a key  migraine  trigger, so make sure that you take on board plenty of fluid before, during and after exercise. Eat a slow release meal or snack at least an hour before exercising, for example a banana or a bowl of fibre-rich cereal.   

The best way to see any changes caused by your new healthy regime is as always to keep a diary. If you don’t already use them, find our own templates here.

If you fancy taking up running, the NHS has a fantastic ‘Couch to 5K’ podcast, a 9 week programme that gradually builds up from walking to running 5km - ideal for beginners.

Find out more about the National Migraine Centre here and to book an appointment with one of their headache specialists. You can also contact them about receiving the email newsletter. 

I'll be writing soon about my own experience with this heaven for migraineurs. 

Past posts you might also be interested in:

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