National Epilepsy Week – a man on a mission to raise awareness

Birmingham City Council finance officer Kasam Parkar is a man on a mission to raise awareness of a condition that affects thousands of people in Birmingham and the wider West Midlands. He explains why he is playing an active role in National Epilepsy Week.

You probably wouldn’t know it but there’s a chance you’ve passed someone today with epilepsy. Maybe you sat next someone with epilepsy on the bus or train, maybe a work colleague has epilepsy.

The fact is that epilepsy affects 54,000 people in the West Midlands – I’m one of them – and 87 people in the UK are diagnosed every day. That’s a total of 32,000 new cases each year.

So why is the condition so rarely talked about?

Epilepsy has, for decades, been identified as a large contributor to death and disability in every nation around the world. This serious and common disease is overlooked, underfunded, under diagnosed and under-treated. Sadly that has stopped individuals from talking about epilepsy, leading to a lack of public awareness.

That’s why National Epilepsy Week (May 16-21) offers the perfect opportunity to raise awareness about this most common neurological condition, characterised by unusual electrical activity in the brain, which is still very much misunderstood.

The main aim of the week is to raise awareness about epilepsy to dispel the myths, social stigmas and discrimination attached to the condition. People are considered to have less value to their community and are seen as only dependent on welfare. This view, together with a sense of vulnerability when it comes to seizures, places people with epilepsy at severe risk.

This year with the support of the Birmingham City Council I have decided to raise the awareness of Epilepsy within Birmingham.

  • I appeared on Noor TV to raise the awareness on Epilepsy within the Asian Community with the help of an Epilepsy Action Manager, Epilepsy Consultant and Epilepsy Nurse.
  • I contacted a Birmingham bus company, National Express West Midlands, who kindly agreed to donate poster space to national charity Epilepsy Action. The posters are part of Epilepsy Action’s Let’s Talk about Epilepsy campaign
  • I arranged with numerous organisations and companies, including all the Midlands football teams, to donate prizes to raise the awareness of Epilepsy with all the funds raised going to research.
  • I persuaded branches of Costa Coffee, Barclays Bank, and Sainsbury’s to put up posters, banners, and leaflets to raise the awareness of Epilepsy. Not only that, but during National Epilepsy Week the staff will also kindly raise money for the cause.
  • I have taken leave to raise the awareness by selling raffle tickets in all five CAB buildings across Birmingham. I will decorate the buildings and aim to spread the word about epilepsy to as many people as possible.
  • I have arranged an Epilepsy Awareness Training Day for all staff in the Council.
  • The week’s events culminate in a sponsored walk at Cannon Hill Park on Saturday 21 May which will be opened by the Lord Mayor. Further attractions are set to include bouncy castle, face painting and a variety of stalls.

I’m one of over 60 million people in the world that are affected by epilepsy. That’s more than twice the amount of people that suffer from cerebral palsy, muscular dystrophy, multiple sclerosis and Parkinson’s disease combined. But, despite the prevalence of epilepsy in our communities, it is a neurological disorder that continues to be widely misunderstood. I am committed to improving the lives of individuals and families affected by epilepsy, and ensuring that the requisite funding is available for the treatment and support services that people with epilepsy critically need.

Working together to get Sparkbrook sparkling

Sparkbrook residents joined Birmingham City Council, the public health team and other partners for a mass clear-up of one of Birmingham’s busiest High streets.

Sparkbrook Sparkling saw volunteers clear a stretch of the Stratford Rd from Camp Hill Island through to Ladypool Rd.

Mohammed Ashfaq of drug and alcohol support service KIKIT Pathways to Recovery said: “What we wanted to do today was empower local people to come out and make a difference. The people of Sparkbrook are really passionate about their community and we want to work with the City Council to improve the area.”

Piali DasGupta, assistant chief executive of Birmingham City Council, said: “It’s so inspiring to see the teamwork between council officers and people from the community. Eeveryone clearly believes in what is happening here.”

Abdullah Rehman of the Balsall Heath Forum said: “It’s really important for us to be working in partnership. We, the residents, want the same thing the city wants. We want to improve the lives of local people, improve our area and inspire people.

Tapping into Brum’s talent and innovation

Last Friday I had a pig in muck moment.

Hosted by that hotbed of forward thinking grooviness, the ImpactHub, a small number of fellow travellers sat down for a couple of hours to make my brain hurt on the subject of an ‘open innovation system’.

Pretentious? Hopefully not.

Under discussion was actually something very straight-forward; how we might further encourage and accelerate a progressive, welcoming and applied approach to convening interested parties from civil and civic society to tackle the city’s wicked – and not-so-wicked – issues.

Those of you who have been following my ramblings for the last couple of years will know that I am (very) interested in working out, among a number of things, how the council can itself become more innovative, whilst also being more enabling of others across the city to do the same.

Within the city and the city council there is such incredible talent to tap into and part of my role is to understand how this might be better released and nurtured to the benefit of Birmingham and beyond. Between us, it seems to me, we can invent and reinvent pretty much anything.

So, whether it’s government policies, local issues, technology or – best of all – pure, joyful curiosity that stimulates us and concentrates the mind, there is no better time than now to be thinking about how to forge an even stronger and more powerful coalition of those who would seek to innovate and experiment to make the lives of the people of the city better – and, in doing so, be fulfilled themselves (albeit without losing that essential sense of restlessness that drives creativity).

So, we discussed “multi-actor models” (ie where everyone has a role), a “system balance sheet” (ie where you look at all the benefits and resources, not just one institution’s), ‘brownfield innovation’ (nope, no idea on that one!), ‘innovation thinkers and innovation doers’ (self-explanatory) and loads more besides.

And by the end of the session I had come away with three (more) questions:

  1. How does an organisation create its own appetite and momentum for innovation (as opposed to the chief executive simply mandating “go forth and innovate”)?
  2. How does innovating become part of the day job and not something you need time out of your already busy schedule to go and do?
  3. How do we innovate by default with others?

These, and no doubt other questions, will be returned to in the coming weeks and months and we will find the answers and act on them.

For now, let’s just do some thinking together in public. And to get you started, follow the links below.

Right here, right now – http://www.curiouscatherine.info/2016/05/02/collaboration-do-you-need-to-slow-it-down-and-do-it-right/

31 May to 2 June – https://www.eventbrite.co.uk/e/birmingham-global-gov-jam-2016-tickets-24903162028

11 June – http://www.tedxbrum.com

Best wishes,

Mark

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