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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

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

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.

 

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

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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