What is Neurofibromatosis Type 1
NF1 is a common genetic condition that causes nerve tumours to grow where they shouldn’t. The “spelling mistake” in the gene is found on chromosome 17 and occurs in 1 in 2,500 of the population. There are approximately 25,000 people in the UK diagnosed with NF1.
NF1 varies widely in how it affects those who have the condition. Many people with the disorder will be affected very mildly and may have nothing more than skin changes. A minority of people (around a third) who have NF1 will have medical problems related to the disorder at some time in their life. Some of these problems will be mild and easily treatable and others will be more severe
If your employee has NF1
A range of mild learning difficulties is quite common in NF1. Not everyone with NF1 has these difficulties. When someone has NF1 and problems with learning, it is unlikely they will have all of the problems listed below. So it is important to identify what your employee's particular difficulties are by asking them to describe these.
Here are some examples of the sorts of learning problems that can occur and suggestions about how to help:
● Ensure you have the employee's attention. Use simple plain English.
● Break instructions into manageable bits. Check for understanding.
● Reduce distraction (noise, movement).
● Move employee to a quieter (but not isolated) area.
● Consider a mentor until your employee has mastered the task.
● Practice it until confident. Allow a brief break before going on to the next task.
● Give short sentence instructions.
● Use plain English.
● Avoid figures of speech (e.g. don't say “We are all in the same boat” but do say” We all feel the same about…”)
● Some people with NF1 have unclear speech. Some people have difficulty expressing themselves, but know what they want to say.
● Pause between instructions. Check understanding, yours and theirs.
● Simplify information.
● Give short sentence instructions.
● Reinforce point by point or offer a visual prompt.
● Repeat information.
● Check to ensure understanding.
● Help employee to know the starting point.
● Demonstrate the task and offer prompts and reminders.
● Provide visual reminders of each step.
● Break large tasks down into smaller steps.
● Use different coloured folders/paper for different tasks.
● Offer calendars, diaries, organisers etc.
Lack of Confidence
● Adults with NF1 may have had significant problems in school.
● That experience can lead them to seem unwilling to try new tasks. But with encouragement and the right approach, they will do well.
● Play to their strengths.
● Often resourceful, conscientious and hard working.
● Everyone thrives on praise when a task is done well.
Talk to your employee about what they find difficult
Identifying strengths and weaknesses is a starting point. Your employee has lived with NF1 all their life and will know what they can do… and what they find difficult. Their difficulties may arise directly from health factors or because they have mild learning difficulties.
Sometimes there can be apparent inconsistencies in some of the difficulties someone has with NF1. For example, you may notice that a skill you assumed had been mastered may need to be “relearnt” if you move this employee to a different setting or environment. This is not a major problem…it just needs a little thought and planning.
Under the Equality Act reasonable adjustments must be made in the workplace to support employees with disability. These do not necessarily involve major costs.
Consider redeployment rather than lose a skilled member of staff.