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By Josie Matthews

Word of Mouth! There’s nothing quite like it. So what better way to swap experiences about blepharospasm than getting together a UK-wide group of people affected.

And this is what happened at the recent National Blepharospasm Day, which took place on 21st November 2015. The event, the first of its kind, organised by the NIHR Biomedical Research Centre at Moorfields Eye Hospital and UCL Institute of Ophthalmology , offered a fantastic chance to meet other people with blepharospasm to exchange information and tips about coping with this condition. It was also comforting to know that we’re not alone.

But equally important, the day also offered an excellent opportunity to interact with the professional medics and clinicians who treat blepharospasm in a relaxed and pleasant atmosphere. I found it extremely useful – and reassuring - to talk to some of the medics present about the myectomy operation I am due to have in the New Year. Hospital appointments usually suffer from time constraints but here it was very different. There was lots of time for chatting. In fact it was positively encouraged.

Chaired by Daniel Ezra, Consultant Surgeon at Moorfields, the programme was designed not just to enable patients and medics to share experiences but to focus on actions aimed at improving diagnosis and treatment and to identify priority areas for research in partnership. To this end, there were presentations by, and discussions with, both a Patients’ Panel and a Panel of expert researchers and medical professionals.
Rea Mattocks who was instrumental in organising the Day from the patients’ perspective, shared her positive experiences of improving diagnosis, treatment and research into another rare eye condition called ‘Birdshot’ (for short), and Guy Parckar, CEO of the Dystonia Society, updated us on the charity’s pivotal work in providing support, advocacy and information for those with the condition.

The Patients who made up the Patients’ Panel were Alan Bates, Christine Clarke, Jane Shelley and Patricia McCullough. They passed on some incredible revelations and outlined how their condition was diagnosed, or in some cases how they went years without the correct diagnosis! All stressed how debilitating the condition can be. One person compared the condition to his heart disease. Whereas his heart disease was life threatening, surgery and medication has made normal living possible. In comparison, he described his blepharospasm as a ‘whole-life condition’ and arguably more life-changing, because it impacted on his and his family’s everyday life. I was particularly horrified to hear their stories of years of misdiagnosis. And such insights only serve to highlight the vital need for more information about the condition to be made available to GPs and opticians too and the general public.

I consider myself relatively lucky in that I was diagnosed quite quickly. Two years ago in fact. But then looking back I realise that even as a two year old I was blinking a lot and spoiling any wedding photos where I was a bridesmaid because I had my eyes closed! Twenty years later I was admonished for flashing my eyelids at a prospective employer who obviously misinterpreted my twitching eyes! And more recently I was thought to have fallen asleep at a meeting as my eyes were closed! So I’ve actually had it most of my life!

In conclusion what did the day bring to me? Basically hope for the future. Hope that by sharing our knowledge of the condition we will empower the medical professionals, the neurologists and the clinicians, including GPs and Opticians, to undertake more research with the ultimate objective of finding a cure, although this will of course take funding.

 

Next Steps following the Day

In order to maintain the momentum of the Day, I joined a small group of other people with blepharospasm who took part in the day - Alan Bates, Marc Surry and Stephen Worsfold – and who volunteered with Rea Mattocks to meet with Guy Parckar on 4 December last.

Our shared aim is to consider and work out how the Dystonia Society could further help patients and clinicians to work in partnership to do nothing less than transform diagnosis, treatment and research.

To this end, it is vital that the number of people with blepharospasm, the nature and impact of their condition, how it is diagnosed and the effectiveness of current treatment is more accurately known across the UK. We are therefore most grateful to Karen Bonstein of the NIHR Biomedical Research Centre for collating/analysing information about ‘Living with Blepharospasm’ from all of us who took part in our Day.

So please watch this space for further news!

Service availability over the Christmas holidays.

Last Chance - London to Brighton Cycle

Register by the last Friday in August to take part in this exciting fundraising challenge. The event is a 54 mile cycle starting in London and finishing on the Brighton seafront.

The Dystonia Society responds to a BBC Scotland report into the ‘postcode lottery’ for Deep Brain Stimulation (DBS) treatment in Scotland.

The National Audit Office (NAO), which is an organisation set up to scrutinise public spending, has published a ‘progress review’ into ‘Services for people with a neurological condition’.

More information about the report, which was published on the 10th of July, can be found here: http://www.nao.org.uk/report/services-for-people-with-neurological-conditions-progress-review/

The report checks on progress made since an inquiry by the Public Accounts Committee in the House of Commons in 2012, and found ‘mixed’ progress had been made in terms of implementing the Committee’s earlier recommendations around improving services.

The three recommendations against which the NAO judged progress to be poor were:
• “using the clinical commissioning group outcomes indicators set, joint strategic needs assessments and health and wellbeing boards to ensure that all people with neurological conditions have appropriate access to services
• “mandating joint health and social care commissioning of neurological services
• “ensuring that everyone with a long-term neurological condition is offered a personal care plan, covering both health and social care”

The Neurological Alliance, of which the Dystonia Society is a member, is planning to follow-up on the report and urge the Public Accounts Committee to run a new inquiry into the provision of services for people with neurological conditions. Read the response from the Neurological Alliance here...

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