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.

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.

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.