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Talking to a medical consultant or other healthcare professional can be an overwhelming experience especially when they are giving information to you about a complex condition such as dystonia.

Many people tell us they don’t know what questions to ask or they forget to ask the questions they planned to.

However, it’s really important to establish a good dialogue with the person providing your treatment (or the treatment for the person you care for). Together with the doctor or nurse, you should agree the right approach to treating dystonia and agree and document a care plan. This should be reviewed regularly and revised if necessary.

Before the appointment

It’s worth thinking about the questions that you want answers to and writing them down. Examples of questions that people often want answered about dystonia are:

  • What is dystonia?
  • What causes it?
  • Why have I not heard of it before?
  • Will it improve or get worse?
  • What are the treatments and will they help?
  • What does the treatment involve?
  • Are there side effects of treatment?
  • Will it affect other family members?

It can be helpful to discuss these and other questions with the Dystonia society helpline (0845 458 6322) before the appointment. We can also send you some leaflets so you can read about dystonia before you go. That way you’ll be fully prepared to get most value out the medical appointment when it happens.

If you have a lot of questions, it be worth asking for a longer appointment to ensure you have time to go through them.

During the first appointment (or if treatment is being changed)

You need to be sure that dystonia and the proposed plan of treatment have been discussed and that you understand what you’ve been told.

A few helpful tips:

  • Have paper and pen to hand to write things down as you’re told them.
  • Take a family member or friend with you and ask them to make sure that all your questions are answered.
  • Don’t be frightened to ask the doctor or nurse to repeat something if you haven’t understood.
  • Medical language can be very confusing – if the doctor or nurses use a word you haven’t heard of before or don’t understand then you shouldn’t be embarrassed to ask for them to explain what it means
  • If English is not your primary language, ask for an interpreter or bring someone with you who can interpret. The hospital should have access to someone who can speak your language.
  • See if you can arrange childcare if you have younger children. That way you can concentrate on what you’re being told.
  • Dystonia symptoms can be variable and sometimes disappear when in the consulting room. It’s therefore worth taking a video of the symptoms at their worst in case this happens.

Also, make sure you mention all your symptoms. Dystonia can sometimes affect more than one part of the body with symptoms that may appear unconnected – and doctors sometimes forget to ask.

Between appointments

Treatments such as botulinum toxin sometimes have side effects (these are usually mild and disappear in a few weeks) so you need to have a contact number in case this happens. If you have any worries, you should call the person responsible for your care.

Other helpful tips are:

  • Keep a diary between appointments:
  • If symptoms are variable day to day or change then take a video of symptoms at their worst.
  • Record how well the treatments worked (some healthcare professionals can give you a form to track this)
  • Record side effects (e.g. swallowing, pain, tiredness etc)

Getting the best out of treatment

To get the best out of treatment:

  • Comply with medication
  • Stick to prescribed regimes (e.g. physio exercises)
  • Be open with your doctor or nurse about how things are going.

Also don’t be frightened to raise other concerns with your doctor or nurse – some people with dystonia can experience pain, depression, anxiety or stress. If not addressed, these in turn can make the dystonia worse. So it is worth asking for help if any of these are affecting you.   

If treatment isn't working

Dystonia treatments provide significant relief for the vast majority. However, a minority of patients report receiving limited relief. This can be a distressing experience. There are a number of steps that can be taken if this happens. It is important to have an open discussion with the person responsible for your care – it can also be a good idea to call the Dystonia Society helpline to discuss. Click here to learn more about the steps if botulinum toxin injections don’t work.  

If you are not happy with the treatment you are receiving:

  • It is often worth discussing this with the Dystonia Society helpline
  • It is always important to have an open discussion with the medical professional responsible for your care and agree changes
  • If after discussion with your current healthcare professional things don’t seem to be improving, you can request your GP to be referred for a second opinion (they don’t have to agree but usually do)

If you feel you’ve got stuck, you can also talk the Dystonia Society advocacy service

Making a complaint

The vast majority of people with dystonia receive treatment that substantially eases their symptoms and have a good relationship with their doctor or nurse.

However, in a small minority of cases, people feel they have not been treated properly. In these cases, it is possible to raise a complaint. Many people are reluctant to do this – but, if you decide to do so, the treatment centre is obliged to investigate it thoroughly and report back to you with the results. If your treatment has been inadequate they should also explain what they are going to do to improve it.

NHS treatment centres have a service called "Patient advice and liaison service (PALS)" that can give you advice if your feel your treatment (or that of the person you care for) is not going to plan.