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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.

Among the 7,000 respondents were more than 300 people with dystonia. This briefing paper draws out some of the key findings from those who responded to the survey.

Other conditions
One noticeable finding was that many people with dystonia also reported that they were living with other conditions. This included significant numbers who also had conditions like epilepsy, Parkinson’s Disease, migraine or Multiple Sclerosis. The majority considered dystonia to be their primary condition.

Getting a diagnosis
Of all the conditions in the survey dystonia showed one of the longest waits for diagnosis and the most visits to the GP before getting referred to a specialist.

More than half 55% of respondents with dystonia said that they had to visit their GP five or more times before getting a referral, and yet none said that they didn’t need specialist support to manage their condition.

Of those who gave a specific timeframe well over half (57%) said that they had waited 6 months or more for a diagnosis. Just under a quarter (24%) said that they had received a diagnosis within 2-3 months.

Hospital admissions
A quarter (25%) of people with dystonia responding to the survey had had an unplanned hospital admission on account of their condition, but positively only a few people had had repeated unplanned admissions – just 1.5% had had more than 10 unplanned admissions as a result of their condition.

Information
There was a very mixed picture with regards to the information that people received about dystonia when they were diagnosed: 55% were satisfied with the information they received, while 45% were unsatisfied – clearly indicating that there is an issue with the consistency of information.

The picture was much worse, however, when it came to information about emotional or other support to help in managing the condition: 76% were unsatisfied with the information they received about this type of support, and only 24% were satisfied. This tallies with previous research that the Dystonia Society has carried out, which found that people with dystonia are very seldom given clear options about emotional or mental health support when they are diagnosed, although many would have welcomed that support.

Quality of support
When it came to rating the support that people with dystonia had received, overall, through the health service, the response were more positive. Respondents were asked to rate how helpful health services had been in meeting their needs:

The survey then asked what would make a difference to improve the quality of treatment. Responses varied across patients with dystonia, but there were some common themes including:

  • More understanding of the effects of dystonia
  • Improved awareness (especially among GPs) to speed up diagnosis
  • More time with specialists/consultants
  • Treatment to be available more locally

In particular, the theme of greater understanding within the medical profession not just of the condition itself, but of the impact that it has on daily life was mentioned by significant numbers of respondents.

Conclusion
Overall there are few surprises in the survey data:

  • Despite some improvements dystonia still takes far too long to diagnose;
  • Overall people are happy with the support that they receive, but there are still a significant number for whom treatment is just not working;
  • There is a very varied picture in terms of the quality of information people receive from within the health system – in particular people felt very unsatisfied with information about emotional support;
  • Too often people felt that the full impact of dystonia on someone’s life is not recognised, even within the health system.

It is clear from the findings that more work is needed to raise the awareness and understanding of dystonia, and the information that GPs are using to make referrals. It is also clear that a more holistic approach is needed in managing the condition – dystonia can have a huge impact on people’s lives, but there seemed to be little recognition of this, and little information about support that could make a difference.

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

 

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

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.

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