Speaking up for those who don't have loud voices

I suppose it's always been in my nature to stand up for the underdog - for those who, for whatever reason, don't get their voice heard loudly enough in society.

That's probably why I became a journalist all those years ago and why it makes me so angry that courts and councils are no longer covered anywhere near adequately as the local newspaper model changes beyond recognition.

And since having my stroke, I've realised just how much the health and benefits system in this country walks all over those who won't or can't make a fuss.

The benefits system makes it difficult to claim (24-page application forms when you may have trouble writing or understanding questions, for instance) and seems to want to take the earliest opportunity to penalise you for the slightest error. Meanwhile, the badly-managed National Health Service is often reticent about telling you what help may be available when you leave hospital and often fails to provide what help they do tell you may be available.

I've often found that it's up to those like me, with inquiring minds, to go hunting for information. I can do it, it's in my DNA even after my stroke. But for those who may have been a lot less confident before their health broke down (and certainly are after it broke down), life with ill-health is a minefield.

That's why I believe it's up to those of us who can and will make a fuss to do so. It's why I get involved in stroke-support groups, I write to MPs, I lobby councillors and it's why I volunteer for the Stroke Association. I am on panels with medical professionals, which decide where the SA's limited funds for research into the causes of stroke and stroke-treatment are used and it's why I am one of their 'talking heads', stroke-survivors who will go on TV and radio and in the newspapers, tell our stories and shout about the need to get the voices of stroke-survivors heard.

On Thursday of this week, 15 of us met with a group of professional research people from the SA to discuss the charity's overall strategy for the next five years from 2019-24. Those talks are obviously at the very early stages, but it isn't giving away any secrets to say that the stroke-survivors in the room were adamant that the needs of those living with the aftermath of a stroke have to be front and centre of how the organisation thinks.

We don't want academics pursuing ideas which might be useful to the stroke community in 20 years' time. More than 100,000 people every year in the UK have a stroke. That's one every five minutes. There are over 1.2million stroke survivors in the UK. People of working age are two to three times more likely to be unemployed eight years after a stroke than the rest of the community. Stroke costs society £26billion a year. Stroke survivors need support and understanding and encouragement now and it shouldn't just be for those of us who will bang on doors and have loud voices.

I get asked regularly why I do what I do to promote stroke awareness. I could think of plenty of reasons but one of the most prominent is the desire to help those who can't raise their voices as loudly as I do. This blog, as well as my Stroke Association work, are part of that effort.