News http://www.dystonia.org.uk/index.php/about-us/news Wed, 22 Nov 2017 12:38:15 +0000 Joomla! - Open Source Content Management en-gb info@dystonia.org.uk (The Dystonia Society) Urgent Appeal Summer 2017 http://www.dystonia.org.uk/index.php/about-us/news/675-urgent-appeal-summer-2017 http://www.dystonia.org.uk/index.php/about-us/news/675-urgent-appeal-summer-2017 We recently launched an Urgent Appeal, asking for whatever support people can manage to help the Society through a really challenging time for our funding. 

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emily@dystonia.org.uk (Emily Richardson) News Fri, 04 Aug 2017 13:26:32 +0000
"Falling Short" findings on dystonia http://www.dystonia.org.uk/index.php/about-us/news/670-falling-short-findings-on-dystonia http://www.dystonia.org.uk/index.php/about-us/news/670-falling-short-findings-on-dystonia In March the Neurological Alliance produced a report on the state of health and care services for neurological conditions across England. The ‘Falling Short’ report was based on a large-scale survey of more than 7,000 people with neurological conditions and found hugely variable levels of services for different conditions across the country.

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emily@dystonia.org.uk (Emily Richardson) News Fri, 02 Jun 2017 14:56:16 +0000
2017 Neurological Alliance Patient Experience Report http://www.dystonia.org.uk/index.php/about-us/news/665-2017-neurological-alliance-patient-experience-report http://www.dystonia.org.uk/index.php/about-us/news/665-2017-neurological-alliance-patient-experience-report The Neurological Alliance has recently published its report, Falling Short – How has neurology patient experience changed since 2014? This shares the findings of a survey carried out by the Alliance last year, with responses from thousands of neurology patients. The report reveals that services to diagnose, treat and provide on-going care are failing patients across the spectrum of neurological disorders.

The Neurological Alliance is now calling for neurology to be prioritised within the NHS and for new opportunities to improve the system to be implemented.

Analysis of the new survey data shows that patient experience in every area – the time taken to receive a diagnosis, access to specialists, on-going care and support – has significantly deteriorated in the last two years. With the number of neurological cases in England estimated to be 12.5 million and NHS expenditure on neurology amounting to £4.4 billion in 2012/13, this is a troubling finding, which potentially impacts millions of people.

Examples of poor patient experience high-lighted by the data include:
• 42% of patients saw their GP five or more times before seeing a neurological specialist – an increase from 31.5% in 2014
• Patients who feel involved in making choices about health services to at least some extent dropped to 63% in 2016 from 71% in 2014
• Only 56% of patients feel their health and care professionals work well together at least some of the time, against 67% in 2014

However, there is hope on the horizon with the emergence of encouraging signs for neurology – the establishment of a National Neuro Advisory Group, redevelopment of the specialised neurology service specification, the dissemination of RightCare Neurology Focus Packs to Clinical Commissioning Groups and development of a new NICE guideline for suspected neurological conditions in primary care. These opportunities for neurology must be seized and implemented, with commitment from both the Department of Health and NHS England.

More specifically, the Neurological Alliance’s recommendations in the report cover four key areas:
• Addressing delays in diagnosis
• Improving access to information, care planning and coordination of care
• Local engagement and prioritisation
• A long term commitment to improvement

More information, including a link to the report, can be found on the Neurological Alliance website

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emily@dystonia.org.uk (Emily Richardson) News Thu, 06 Apr 2017 14:33:03 +0000
Richie McCann: My Story http://www.dystonia.org.uk/index.php/about-us/news/664-richie-mccann-my-story http://www.dystonia.org.uk/index.php/about-us/news/664-richie-mccann-my-story Richie McCann has designed beautifully crafted wooden dog beds for our four-legged friends! His diagnoses of dystonia and his passion for creative furniture design led him to create something wonderful for raising funds and awareness for The Dystonia Society

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emily@dystonia.org.uk (Emily Richardson) News Tue, 28 Mar 2017 13:46:22 +0000
Concert in aid of The Dystonia Society http://www.dystonia.org.uk/index.php/about-us/news/655-concert-in-aid-of-the-dystonia-society http://www.dystonia.org.uk/index.php/about-us/news/655-concert-in-aid-of-the-dystonia-society  

 Author and musician Lee Benson performs in memory of his brother Symon at The Jam House in Birmingham on the 24th of January.

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michael@dystonia.org.uk (Michael Riordan) News Mon, 12 Dec 2016 15:32:22 +0000
Results of Neurological Alliance's GP Survey http://www.dystonia.org.uk/index.php/about-us/news/653-results-of-neurological-alliance-s-gp-survey http://www.dystonia.org.uk/index.php/about-us/news/653-results-of-neurological-alliance-s-gp-survey New research shows more than half of GPs feel people with neurological conditions “do not receive a timely diagnosis”

The Neurological Alliance, of which the Dystonia Society is a member, has conducted a survey of more than 1,000 GPs across the UK to test their views on diagnosing and referring people with neurological conditions.

The survey found that:

  • 85% of GPs in England are either ‘somewhat concerned’ or ‘extremely concerned’ about the time taken from referral for patients to see a consultant neurologist.
  • 59% of GPs believe that the local services and systems in place in their area mean that people with neurological conditions frequently do not receive a timely diagnosis.
  • The large majority of GPs in England feel that they could benefit from further training on identifying and managing people presenting with neurological conditions.
  • Fewer than half of GPs (47%) felt confident in their ability to make an initial assessment and referral for people presenting with signs and symptoms of multiple sclerosis (MS).
  • The survey did not specifically ask about diagnosis of dystonia, but instead asked about some of the best known and most common neurological conditions like MS. The findings, that many GPs were not even confident of diagnosing MS, suggest that very few would be confident in diagnosing a rarer condition like dystonia.

The survey also highlights the delays in getting to see neurologists, and the concerns about the availability of local services, all of which reflect the evidence we receive about dystonia.

The Neurological Alliance has pulled their survey into a report, a full copy of which can be found on their website.

 

Neurological Alliance GP Survey

New research shows more than half of GPs feel people with neurological conditions “do not receive a timely diagnosis”

The Neurological Alliance, of which the Dystonia Society is a member, has conducted a survey of more than 1,000 GPs across the UK to test their views on diagnosing and referring people with neurological conditions.

The survey found that:

  • 85% of GPs in England are either ‘somewhat concerned’ or ‘extremely concerned’ about the time taken from referral for patients to see a consultant neurologist.
  • 59% of GPs believe that the local services and systems in place in their area mean that people with neurological conditions frequently do not receive a timely diagnosis.
  • The large majority of GPs in England feel that they could benefit from further training on identifying and managing people presenting with neurological conditions.
  • Fewer than half of GPs (47%) felt confident in their ability to make an initial assessment and referral for people presenting with signs and symptoms of multiple sclerosis (MS).

The survey did not specifically ask about diagnosis of dystonia, but instead asked about some of the best known and most common neurological conditions like MS. The findings, that many GPs were not even confident of diagnosing MS, suggest that very few would be confident in diagnosing a rarer condition like dystonia.

The survey also highlights the delays in getting to see neurologists, and the concerns about the availability of local services, all of which reflect the evidence we receive about dystonia.

The Neurological Alliance has pulled their survey into a report, a full copy of which can be found on their website at www.neural.org.uk.

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emily@dystonia.org.uk (Emily Richardson) News Mon, 05 Dec 2016 11:38:15 +0000
Disability Awareness Day 2016 http://www.dystonia.org.uk/index.php/about-us/news/651-disability-awareness-day-2016 http://www.dystonia.org.uk/index.php/about-us/news/651-disability-awareness-day-2016 This year Disability Awareness Day celebrated its 25th anniversary. Sharon Forsdyke tells us of her experience of the day:

It’s 1991 and I’m preparing for the next leg of my UK coastal tour while struggling with a painful undiagnosed neck condition. Fast forward to 2016 and I have completed my 84th set of botulinum toxin injections for neck dystonia and I’m on a minibus travelling back to the Park and Ride in Warrington. That morning I was the only passenger; now the bus is full of chattering, bag-laden people and I’m shattered, as I’ve been on my feet most of the day.

But what a day! I have been helping on the Dystonia Society stand at the 25th Disability Awareness Day at Walton Hall Gardens. Our stand was well placed in Marquee 4 beside the Lyneal Trust, which offers canal based holidays for people with disabilities, and opposite the Multiple Sclerosis stall.

Initially our visitors were event volunteers, including Janet Ireland, Information and Advice Officer at the Brain Charity based in Norton Street, where the Liverpool dystonia support group hold their meetings.

Around 9.30am the public started to trickle in and soon there was a steady flow of people asking inquisitive questions about Jane Hewertson’s marvellous display boards.

Jane, Pat Rathbone and I took it in turns to man the stand and wander the gardens, collecting leaflets and connecting with some of the other 250 exhibitors whilst proudly wearing our brightly coloured dystonia t-shirts.

We took a few donations, sold some merchandise and engaged with 74 visitors, some allied to the medical profession, including physios, occupational therapists and nurses. Many had never even heard of dystonia.

Roll on D.A.D 2017!

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emily@dystonia.org.uk (Emily Richardson) News Fri, 18 Nov 2016 14:46:53 +0000
New research - A new clinical tool http://www.dystonia.org.uk/index.php/about-us/news/650-new-research-a-new-clinical-tool http://www.dystonia.org.uk/index.php/about-us/news/650-new-research-a-new-clinical-tool Earlier this year we announced that the Dystonia Society’s seed funding for a new research project has been awarded to Professor Ian Loram, Professor of Neuromuscular control of Human Movement at Manchester Metropolitan University, Faculty of Science and Engineering. Below he explains his project, “A clinical tool for real-time analysis and visualisation of cervical muscles for cervical dystonia”:

“The most frequent treatment employed in treating focal dystonia is botulinum toxin. For it to be very effective, the toxin needs to be injected into each “dystonic muscle”. Identifying each muscle affected by dystonia is at present only achieved by observation, examination or rarely via electromyography (EMG). Unfortunately, the neck contains some of the most complex muscle groups in the human body, with multiple muscles performing similar movements, with some muscles affected being too deep to feel or see during examination; making assessment by physical examination and EMG sometimes challenging.

This project aims to test and further develop our new clinical tool that will identify all muscles affected in neck dystonia, and create a real-time image of the structure and activity of these muscles. Ultimately this could enable an injector to scan the neck using an ultrasound probe and view, in real-time, a three-dimensional image of the neck muscles. The different muscles will each be clearly marked so that those muscles affected by dystonia can be accurately identified, injected and monitored.

To test this technique we are currently working with people with cervical dystonia, alongside a group of unaffected participants. This study involves using MRI and ultrasound imaging to build and refine our models of neck muscle structure and activity, to identify patterns associated with cervical dystonia that are not present in unaffected participants.

This tool will enhance the delivery of treatments such as botulinum toxin and physiotherapy, and provide treatments better targeted to the individual with dystonia; enhancing quality of life for those receiving treatment.”

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info@effectualmedia.co.ukv15 (Dystonia Society) News Fri, 18 Nov 2016 14:37:18 +0000
Awareness Week 2016 Roundup http://www.dystonia.org.uk/index.php/about-us/news/640-awareness-week-2016-roundup http://www.dystonia.org.uk/index.php/about-us/news/640-awareness-week-2016-roundup 13166060 1116984808344973 11430958625831612 nThank you to everyone who helped to raise awareness of dystonia during this year’s Dystonia Awareness Week. It was a fantastic week which saw many people learning about dystonia through our website and social media as well as through events across the country. Here’s some of the highlights of what happened during the week:

 

 

Thunderclap and Social Media

Thank you to everyone who joined our Thunderclap on Facebook and Twitter. The message went out on Wednesday 4th May and we had 189 supporters who got the message about dystonia out to 122,235 people!

Thank you also to everyone who liked, shared, retweeted and commented on our Dystonia Awareness Week posts on social media. Our Facebook and Twitter posts on the first day of Awareness Week (Saturday 30th April) reached almost 30,000 people!

 

Royal Mail 2016

Cakes, bakes and dressing green!

There were lots of cakes eaten during the week, all in the name of dystonia awareness! Carol Huntley held a Tea Party once again at Newcastle University and Amanda Brown organised a dress green day at Royal Mail in Glasgow once again raising £1,050. And in the London office, staff baked mini cakes to give away with leaflets in the foyer raising awareness amongst staff at the many organisations also in the building.

Q+A

On the Thursday of Awareness Week we launched our Q+A video with Harbinder Sandhu from Warwick Medical School who answered questions about her research project on dystonia and non-motor symptoms related to dystonia. If you would like to see the video click here...

 

 


Library display

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Roger Taylor of the Oxford Support Group arranged a colourful and informative dystonia display at Farringdon Library to raise awareness in his local area. Well done Roger!


Active Awareness 

K2B 2016

Many people took a more active approach to raising awareness (and funds too!) during the week. Ian Bamford took part in a 100km cycle ride and Gill Jepson organised a very large team of walkers once again who took part in the Keswick2Barrow Walk and was joined this year by our CEO Guy Parckar.

 

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info@effectualmedia.co.ukv15 (Dystonia Society) News Tue, 21 Jun 2016 15:10:17 +0000