Good Practice Guide


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The role of the GP

Working alongside multi-disciplinary neurological team
Ideally treatment for dystonia will be provided by a multi-disciplinary neurological team. In this case, the GP needs to track the progression of the patient’s dystonia treatment, usually through clinic letters from the patient’s consultant, to ensure that any proposed treatment for other conditions does not conflict with this.

It is important GPs recognise that not every symptom a dystonia patient presents with is necessarily related to the dystonia. There is a danger that delays may occur in diagnosing another perhaps more serious condition if there is a wait while a referral is being made to the neurologist, or if the patient is advised to bring the new symptom up at their next visit to the neurologist.

The GP may also be involved in issuing repeat prescriptions for dystonia-related medication, endorsing patients’ applications for welfare benefits, DVLA and blue badge applications etc., in making referrals to other specialist clinicians or service providers, and in assisting with the transition of children to adult services.

Areas where there is no multi-disciplinary neurological team
In areas where there is no multi-disciplinary team, the GP may be involved directly in supporting the specialist managing the dystonia.  In this case, the GP will need to be aware of the additional referrals appropriate to best practice in managing dystonia (see section 5).

Radiography

Radiographers may encounter patients with dystonia when they come in for radiological tests such as x-rays and scans in connection with the dystonia or for some other health issue.
These patients may have great difficulty getting into the correct position or keeping still during the procedure. It is important that the radiographer is sympathetic and talks to the patient and to others involved in their care, ideally in advance of the appointment.
They should find out what helps or aggravates their movements and spasms, whether they need supports to help posture or to alleviate spasms, and whether there is a better time of day to carry out the procedure.  Some patients may require sedation to be able to keep still for the procedure.

Dentistry

Dentists need to understand the nature of the condition and how it affects the patient’s ability to sit still and open their mouth. They may need to assist by helping them to find a comfortable position to reduce muscle spasms during examination and treatment.

Some forms of dystonia, such as oromandibular and lingual dystonia, can cause the lining of the mouth and the tongue to become damaged by uncontrolled chewing and biting. This leads to ulceration and infection which can be very painful. These forms of dystonia can also make opening the mouth in a controlled way very difficult and as a result having a dental examination and treatment is almost impossible. It may require treatment to be provided under sedation or general anaesthetic, with the attendant risks discussed if necessary in advance with relevant medical professionals.

Dentists need also to be aware of particular issues relating to patients who have had DBS (Deep Brain Stimulation).  Diathermy is contra-indicated, and some patients may require prophylactic antibiotics to prevent infection. Specialist advice should be sought from the patient’s DBS nurse if necessary.

Psychiatry

Tardive dystonias can be caused by some anti-psychotic medication. It is therefore likely that many people with tardive dystonia will also be under the care of a psychiatrist. For all types of dystonia, care needs to be taken when psychiatric treatment is being planned as some medication can have an impact on existing dystonia.

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