Benefits / rights



The following guide has been written by Angie Brown, our Helpline Manager, who runs our Dystonia Advocacy Service.


The advocacy service at the dystonia society has been in great demand as I am sure you can imagine, with a caseload of 200 and building.


We have achieved an excellent success rate on appeal. However, one hard fact which has become apparent is that very few people appear to get the required number of points at first attempt.


One of the main reasons for this is that the people carrying out the assessments, whether it be face to face or over the phone (computer says NO!) just don’t understand dystonia.


Despite our huge awareness raising campaigns to bring knowledge of dystonia to the people making these assessments, there still appears to be ignorance as to exactly how debilitating dystonia can be plus a general misunderstanding of fluctuating conditions.


The following are some tips which I have learned from speaking with people who have been through applications for benefits because of their dystonia and which will hopefully help you to avoid some of the pitfalls they encountered.


Please note that these are tips to present your symptoms more clearly. It is essential you are always truthful about your condition and symptoms. To do otherwise would be an offence.



This may sound strange but a lot of people with dystonia spend their life hiding symptoms when in. Unfortunately, this becomes such a pattern and habit in life that they even do it when they are being assessed! We live in a judgemental world but your benefit assessment is one time when you need to just let the dystonia take over. So, no more brave face syndrome – if the assessor cannot see just how debilitating the symptoms are, they are not going to score you the points you need.



A lot of the questions in the benefit application forms do not fit exactly with dystonia. So, when answering a question like – Can you lift your hand above your head? The simple answer may be YES - however, you then need to qualify that answer by explaining that the effort of lifting your hand above your head would mean that it triggers both pain and the dystonic tremors or spasming which are a daily and debilitating factor for your dystonia. The difference between these two answers is huge in its implications as to whether your application will be successful or not.



You should not have to ‘prove’ that you have dystonia – however, it appears very clear that the more medical letters you have the more likely you are to get the benefit. So, a letter from your Neurologist is important, a letter from your GP is important and copies of any medical appointment letters are all equally important. Give the assessor copies (never the originals) as there seems to be a lot of paperwork going missing and some centres don’t always pass on paperwork to other centres of assessment. Also, if at all possible, send these letters in with the application form rather than relying on the assessors to join them all together at a later date. They do appear to make a difference to the eventual outcome.



Whether you are being assessed in your own home, or at an assessment centre, or at a tribunal, take someone with you who you trust and who can be there to see fair play. They may not be allowed to speak, but you may feel more comfortable with someone by your side and it’s not a bad thing to have a witness to the proceedings.



People tell us that a simple question like “How did you get here today?” is in fact the beginning of the assessment, even though you may just have entered the room and have not officially been made aware that the assessment has in fact commenced. Fir instance, the person who was asked that question was then told – “oh you can travel on public transport can you” – because they said they have come on the bus. Once again, they did not think to explain that they had to have someone with them to help them onto the bus and off the bus, nor that the effort of doing this, meant that they had to rest and that they were now in considerable pain and discomfort as a result. So it is important to explain these things fully.



    • None of the above are meant to make you feel any more worried or nervous than I am sure you feel anyway trying to get through the benefits minefield.
    • Be confident that you have a very real neurological movement disorder which is termed a chronic long term condition under the Disability Discrimination Act and more recently the Equalities Act.
    • If you have any additional information such as a small video clip of your when your dystonia is at its worst take that with you.
    • You can also prepare a five day diary of what it is like to live with dystonia and include that with your application.


When we write an advocacy letter, we point out the medical features of a particular type of dystonia, and then talk about how the condition affects YOU. We also back up this information with our information leaflets and the Best Practice Guide. These letters come direct to you and are not sent off by us which means that you maintain control over exactly what information is shared by us on your behalf.


Good Luck – Just because you’re worth it !



For more information, email Angie Brown, Helpline and Support Manager -