A Reply from NICE

I recently received a reply to my letter to NICE. It is good that they acknowledge " the strength of feeling in the patient community".
Dear Mr Crowhurst,
Thank you for your follow up email of the 22 September, your letter has been passed to the corporate communications team to respond.
NICE will access all the evidence that falls within the new scope however, I cannot confirm or deny whether the JCPMH report will be included as the new scope hasn’t been developed as yet. We will follow our usual, published process to search for and assess evidence to answer the questions which will be set out in the scope for the guideline.
The draft of the suspected neurological conditions guideline was released for consultation in August this year. Consultation on this guideline has now closed but the committee will consider and respond to each comment submitted by stakeholders. The guideline will also be revised before publication to take account of stakeholder comments.
In response to your specific question about whether provision will be made for individuals to become a committee member if they are unable to attend in person. I have been advised that one of the requirements of NICE committee membership is attendance at meetings in person. For people with special needs NICE will make reasonable adjustments to support their participation in meetings, including booking overnight accommodation if needed, however in order to maximise input to the discussion we ask that people attend.
We don’t know when committee vacancies will be advertised because the guideline has not been commissioned yet. All vacancies will be advertised on the NICE website and other appropriate places (for example, NICE Twitter, social media and websites of stakeholders, Medical Royal Colleges and professional organisations). Registered stakeholders are also notified. Candidates are required to submit a declaration of interests, curriculum vitae (CV) and covering letter, or application form in the case of lay members. If you haven’t already done so I would suggest that you subscribe to the NICE monthly newsletter as this will inform you of any forthcoming guidance topics. You can register via the NICE newsletters and alerts section.
The committee will be appointed by open recruitment in line with NICE's policy and procedure for recruitment and selection to advisory bodies. The resulting committee should, as far as practically possible, reflect the range of stakeholders and groups whose activities, services or care will be covered by the guideline.
The final composition of a topic‑specific committee is agreed by the developer and NICE staff with a role in guideline quality assurance and takes into account the final scope for the guideline. We are aware of the strength of feeling in the patient community and we will work to ensure a balanced and diverse committee, as we do for all our guidelines.
In relation to the bullet points you have made I cannot confirm at this stage what the scope will include as I have previously mention this hasn’t started being developed as yet. When the draft scope is published it will be open to public consultation and you will be able to comment on this. You can do this by feeding your comments through one of the registered stakeholders or you can feedback your comments as an individual. I should make you aware that, as explained in our guidelines manual, although NICE will consider comments on the draft guideline from individuals, we do not have the resources to respond to your comments on an individual basis, and they will not be published on the website alongside the comments received from stakeholder organisations. (NICE is only able to formally respond to consultation comments from registered stakeholders, and these responses are published on the NICE website).

All feedback from stakeholders from the surveillance consultation will be passed to the developers for their consideration.
Some engagement with stakeholders will begin in the autumn. We will formally commission the guideline developers to begin the guideline development process as soon as we can, and as a priority. More information on timescales will be available on the website in due course.

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