RIP Allan Robb

I see the media are reporting that the BBC Radio journalist Allan Robb has died.

Allan had MS. I don’t know what type of MS it was and I don’t know how he died.

I am assuming that the MS was a contributory factor in his death as the media are implying that his death was actually caused by MS, which I have always been told is impossible. “You will die with MS, not of MS” is the mantra bandied around by MS nurses and the like.

Take a look:

  • The Guardian – “…has died aged 49, after suffering from multiple sclerosis.”
  • BBC website – “…has died at the age of 49. He had been suffering from multiple sclerosis.” 
  • All media Scotland – “…has died aged 49. He had been battling multiple sclerosis.”
  • New Statesman – “…dies of multiple sclerosis”

Nice use of the words “suffering” and “battling,” as well, I’m sure you will agree.

This sort of lazy journalism does nothing for the image of people like me (and probably you) with MS.

Either that, or all the health professionals I have met in the last couple of years have been telling me lies.  I’d like to think that an MS specialist has more knowledge of the disease than a journalist, anyway.

Anyway, further to this, I like to test out the UK’s MS charities’ use of social networking. After Allan’s death had been reported, I sent two tweets each on the subject to the MS Trust, the MS Society (UK) and the MS Resource Centre to see if any respond. That was three days ago, so far no replies – watch this space.

Health talk online

Even with all the support in the world, diagnosis of a chronic illness can be a dreadfully lonely experience. While the MS Society and the MS Trust and the nurse assigned to me were all utterly wonderful when I was diagnosed, I think what I needed (need) more than anything was to connect with other people who have MS and share experience.

Ultimately, health professionals specialising in MS can give you the lowdown on the disease and tell you everything you need to know and more, but it is extremely unlikely they have the disease themselves. It is like a NASA engineer telling an astronaut what it will be like flying in space.

So it is only natural to turn to the web for advice. But it’s also widely acknowledged that the web can be a wildly misleading and biased source of information (I did Health Informatics as part of my Masters degree, so trust me).

For the most part, I have connected with others so far, through YouTube, various Facebook discussion boards and blogs such as this one.

When I heard about www.healthtalkonline.org on the BBC1 Breakfast show this morning my ears pricked up. This is a new resource primarily for people diagnosed with chronic illness.

The idea behind it is that you can access interviews from other people with the same condition as you or your loved one and hear their experiences of diagnosis and living with the conditions. The patients interviewed are a representative sample from across the UK and the site is managed by experts from Oxford University.

“Sounds interesting,” I thought “must remember to check it out later.”

The BBC feature has obviously increased traffic to the site crashing it’s servers as it was unavailable for much of this morning, but I have just accessed the site and I can report that there is NO information on MS. Clicking on “nerves and brain” brings up dementia, epilepsy, motor neurone disease, parkinson’s disease and stroke, yet there is no information on the UK’s most common neurological condition. Even clicking on “living with disability” only brings up
information on autism.

The only relevant info is on chronic pain where apparently one of the interviewees has MS.

I know, I know… early days… give it time…

…but it’s very disappointing.