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Nerve Tumours UK Community Survey

15 September 2021

During the first period of lockdown in 2020, we launched our most comprehensive discussion with our community for many years.

We sent out a very clear and simple survey asking what you wanted us, Nerve Tumours UK, to do for you, and we then asked you to prioritise your needs. We also asked you to rate the services that we currently provide so that we could learn and improve, where necessary.

The survey, initially circulated in April, was followed up in May and October of that year, to ensure we reached as many people as possible, and to encourage as many responses as possible. The survey reached some 13,127 people, and hundreds of you replied, many representing more than one person in their family.

Of the replies, 45% represented the NF1 community, 10% represented the NF2 community and 1%, the Schwannomatosis community. Carers made up 31% of replies, whilst a further 13% of feedback came from the wider associated community.

It came as no surprise that for 70% of our community, the main priority is on the ground, regionally based, Specialist Neurofibromatosis Nurses.

This was closely followed with a need for clear and simple advice that you can pass onto medical professionals or consultants in other areas of medical expertise, so as they understand Neurofibromatosis and are able to consider possible links. I have heard many times, the frustration you encounter when medics do not know about Neurofibromatosis and do not understand if this could be causing your further complications.

You also wanted us to take a lead in educating your GP’s, again another area that I constantly hear about, as so few seem to know about the condition.

This was not just a quick survey to see how we were doing, and what you would like us to do, this consultation provided direct feedback to the strategy group, implemented by The Board of Trustees, to look at how we can continue to provide our services, in a post Covid world. 

The Charity and Board of Trustees have listened to your feedback:


we have produced a strategic plan, incorporating these requests, which will be published later this year.

we are talking to the National leads, Centres of Excellence, etc. and planning new posts, subject to funding.

we are working with a leading advertising agency to get the message out and raise awareness of both the condition, and our services.

we have already launched a GP App.

Our focus remains on how we can streamline our services, co-ordinate our work with partners and improve the education of the medical profession. Our aim is to ensure that people are able to access advice and support as effectively and efficiently as possible.

Whilst this survey has now been completed, we are always open to listening to new suggestions and input from our members.