Reaching adulthood, leaving education and starting on the employment ladder can lead to a number of obstacles, particularly within the working environment, but it doesn't have to. People spend a huge percentage of each waking hour in work, and so it should be as enjoyable and profitable as possible, for all concerned, including those with NF, the group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN).
This is why we have set up the iNForm initiative, so that we can help support as many employers and colleagues as possible to create the best possible environment for people with NF to work in.
iNForm is a programme of information and on-the-ground support from Nerve Tumours UK. This will help you give the most effective support to employees with NF1, NF2 or SWN.
Our team of Specialist Nurses/Advisors are able to offer an advisory service for employers, who will most likely never have heard of NF, and will not be aware of how the condition may affect an individual. They can also host a half-day training session for human resources and other senior managers, especially if it is a much larger company and one, where there may be a number of employees with NF. Working with both the employer, their HR department, and the employee, will benefit all parties, optimising the work experience and work effort, and ultimately the employee and corporate goals.
If you need any help in this area, please contact us at firstname.lastname@example.org to request a Workplace Information Pack, and to be put in contact with a regional community-based Specialist NF Nurse/Advisor, who will be able to help.
The following documents offer useful information that an employer needs to know:
If you have a learning disability, you can join a register at your doctor’s surgery. Anyone of any age, and any level of learning disability can join the learning disability register. Please download this letter - you can take it to your GP and request for you to be added to the Learning Disability Register.
In addition to our iNForm programme, we work with umbrella organisations and researchers to support employee's specific needs in the workplace, as well as providing guidance on issues such as visible differences. Read more:
Guidance for individuals with a visible difference - this document summarises some common questions relating to disfigurement equality at work.
As a result of the Research on Workplace Equality, Dr Hannah Saunders, Research Fellow in Law at Queen Mary University, London has produced this guide on good practice for employers to make their workplace environments inclusive for people with a visible difference.
– Dr Hannah Saunders
"In our project at Queen Mary University in London, we have been researching how employers can create workplaces where people with visible differences are treated fairly. We have interviewed both people with lived experience of visible difference, and HR / people managers. We used the findings from these interviews to draft suggested guidance for employers on how to create appearance-inclusive workplaces. After testing the guidance in focus groups, we’re really pleased that it is now ready! We hope this guidance will give employers some useful ideas, and will make a positive difference to workplace experiences. Thank you so much to Nerve Tumours once again for all your help with this project. "
Download the Good Practice for Employers
Helpful Charities & Organisations
The following can offer further support and specialised services that may be of benefit to you, as an employee or employer. They could also help individuals, looking for help with their rights at work, related to visible difference or disability.
If you are a manager, Diversity & Inclusion Lead or HR expert, and you recruit and support autistic and neurodivergent people, register for updates and get access to the Employers Guide to Neurodiversity.Visit their website
Mind provide advice and support to empower anyone experiencing a mental health problem. They campaign to improve services, raise awareness and promote understanding of mental health.Visit their website
Equality Advisory Support Service (EASS)
A government-funded helpline which assists individuals on issues relating to equality and human rights, across England, Scotland and Wales.Visit their website
This site has some information on specific topics, and a searchable map to find an adviser local to you. Many advisers on their database may be able to offer free advice and support, but always check whether the advice is chargeable before beginning.Visit their website