Survey seeking your advice on the treatment of sialorrhoea

Thank you for your responses. This survey is now closed.

We have been contacted by the Scottish Medicines Consortium (SMC) to help them in their assessment of a medicine called clostridium botulinum neurotoxin type A (Xeomin). This medicine is for the treatment of adult patients with chronic sialorrhoea (excessive drooling) due to neurological conditions. We have been asked to provide information from people with ataxia who experience excessive drooling to help SMC in their assessment of this new medicine. We are interested in hearing from people with ataxia in Scotland and the rest of the UK.

The Scottish Medicines Consortium

The SMC’s purpose is to accept for use newly licensed medicines that clearly represent good value for money to NHSScotland. The SMC analyses information supplied by the manufacturer of the medicine on whether they believe there are clear health benefits, and also justification of the price being charged by the manufacturer. The SMC will also take into account the experiences of patients who have sialorrhoea and their families/carers.

This is where you can really help the decision making of the SMC – if you (or someone you are close to) experiences sialorrhoea (drooling) please help by completing this short survey.

The survey

Please send your answers to Emily Cutting (ecutting@ataxia.org.uk) by 23 August.

Question 1: Please specify whether you live in Scotland or elsewhere in the UK.

Question 2: Do you have ataxia? (Please answer yes/no/I am responding on behalf of someone who has ataxia)

Question 3: What it is like for you to live with sialorrhoea (drooling)?

Question 4: If you are currently receiving treatment for sialorrhoea, what is it? Does it help?

Please continue as there are three more questions below.

Below is some background information from the manufacturer about clostridium botulinum neurotoxin type A (Xeomin).

• Saliva is produced in the salivary glands and secreted into the mouth via a system of ducts. When nerves surrounding these ducts are stimulated they release a chemical messenger called acetylcholine, which then causes saliva to enter into the ducts and into the mouth.
• This new medicine blocks the release of acetylcholine from the nerve terminals supplying the salivary glands. This then reduces the amount of saliva being produced.
• Patients receive the medicine by injection into two of the salivary glands on both sides of the mouth – so patients would receive four injections per treatment.  Treatment would take place no less than every four months.
• In clinical trials, long term treatment with this medicine was safe and well tolerated. Any side effects were due to the underlying neurological condition rather than the medicine itself.
• The manufacturer believes that the availability of a therapy which is effective, safe, and well tolerated, represents a step-change in the management of this distressing condition.

Having read the manufacturer’s information, please answer the following questions:

Question 5: Do you think this medicine would improve your quality of life and experience of care, and if so, how? Would it have an impact on your family and carers?  

Question 6: Do you think there are disadvantages of this new medicine compared to existing treatments?

Question 7: Is there any additional information you think may be useful for the SMC committee to consider?

Responses

Once we have collated your responses to these questions, we will include them in our submission to the SMC. Their Public Involvement Advisor will work closely with us and keep us informed about the progress of the assessment, including advising us of the SMC’s decision on whether to make this medicine available to patients in Scotland.

Your input to this assessment would be very much valued by the SMC – it is important that the patient/carer voice is captured and heard. If the medicine is accepted by SMC, being involved and answering the above questions means you will be playing a huge part in helping people like you to have access to this medicine.

Please send responses to Emily Cutting, Research Officer at Ataxia UK (ecutting@ataxia.org.uk) by 23 August.

Thank you in advance for your willingness to provide advice, and please know that any responses will be kept anonymous when provided to the SMC.

Posted on 25/07/19