Notes for employers

This is a guide for employers on how to support and enable staff who have hydrocephalus perform their best at work.

Overview

Hydrocephalus is a health condition in which cerebrospinal fluid (CSF) accumulates within the head, creating damaging pressure on the delicate brain tissue. It can be treated, usually by inserting a tube-like device called a shunt, which diverts the fluid from the head to another part of the body, so reducing the pressure to a more typical level. There are many causes of hydrocephalus, and it can begin at any stage of life.

People with hydrocephalus can be affected by their condition in a number of often subtle ways. The degree of impact varies a great deal. Some people may have few or no difficulties, others can find their day-to-day life very difficult indeed.

Anything that disrupts the structure of the brain will also affect its function, and so affect the ways that a person thinks, learns, behaves and moves. In addition, any illnesses or incidents which result in the shunt not draining, such as a blockage or a shunt infection, can alter the way the brain works, temporarily or permanently.

The effects of hydrocephalus can sometimes cause challenges at work, but there are usually simple adjustments that can be made to ensure an employee with hydrocephalus can make a great contribution at work.

Not everyone will experience the same issues, or to the same degree, but here are some tips which our members have said helped them.

Common issues at work, and what can help

Memory

Often, working memory is affected. Working memory helps us keep information in our head whilst we use it. Examples include:

Keeping a message in our head while writing it down

Remembering and passing on a message

Remembering what we were doing before we were interrupted

Multi-tasking

Problems with prospective memory (thinking about what might happen in the future) can make planning, and anticipating changes or problems, difficult.

What can help?

Many people with hydrocephalus find structure, routine, quiet and written guidance helpful, to give their undivided attention to one task at a time and remember what they were originally trying to do.

Practical guidance includes:

Keeping interruptions to a minimum

Working in a quiet area, with few colleagues passing by

Giving messages or instructions at the start of the shift, by email, or written on a Post-It note, rather than verbally throughout the day. (Verbal messages are more likely to be forgotten than a ‘visual prompt’)

Negotiating with a colleague to take turns to spend part of the day answering the phone, so the other can work without interruptions. This can increase the efficiency of both workers.

Structure the working day so that the same tasks are done in the same way, and at the same times each day.

Discussing the tasks ahead with a colleague can help get plans sorted out before the work begins.

Attention

People with hydrocephalus may find it harder to focus on an activity of their choosing than on the most interesting thing going on at that moment. They might not be able to filter or ‘block out’ noises in the environment, and might find these sounds more distracting than others do.

What can help?

Having a quiet place to work, at least for more difficult tasks needing a lot of concentration, can be helpful. Some workplaces have background music, such as the radio; it might be useful to have times or areas without music to allow people to fully focus.

Decision making

It can be difficult for a person with hydrocephalus to make decisions, and this can impact on things like prioritising work, or getting started on big, complex projects. Large, complex projects may seem overwhelming, so may not be completed on time.

What can help?

Communicating the deadline for a task to be completed can help.

Some people find a little time spent with them, helping to break down a large task into smaller ‘chunks’, and getting steps in the order they need to be done, can make a big difference to them getting the work completed.

Learning new tasks

It can be a little harder for someone with hydrocephalus to learn a new task. The speed at which the brain processes information can be a little slower, and verbal explanations alone might not be effective. Learning something new can take a little longer, but once a new task is learnt, it should be fine. It may be easier for a person with hydrocephalus to learn one way of doing things, from a colleague, rather than ‘having a go’ at working out what to do, even if the task is similar to others they already know.

What can help?

Presenting information in small chunks, and giving time for it to be absorbed, can be really helpful, as can written notes or bullet-points to accompany the demonstration, or recording the demo on a smart-phone.

(Don’t ask someone with hydrocephalus to take their own notes during a demonstration, owing to memory, multi-tasking and decision making issues.)

Allowing a little time for each piece of information to be absorbed, before moving onto the next, will help the information to be remembered, and in the correct order.

‘Showing and telling’ works better than talking alone. Taking these steps can support a person to succeed in learning a new aspect of work, and reduce the time you all spend.

Navigation

People with hydrocephalus may find it difficult to find their way around, for example to new places, or around large buildings.

What can help?

A map of the building, with special features clearly marked, ideally colour coded, can help. Another person could accompany them until they feel confident they know their way around. If leaving the site, for example to run errands, is an important part of the role, provide clear written instructions (there and back: a person with hydrocephalus may not be able to reverse the instructions) and telephone contact details in case they get lost.

It may be possible to alter the role so that this is not a major part of the job, as it may cause anxiety.

Anxiety

Many people with hydrocephalus experience anxiety, and this can prevent them performing at their best at work.

What can help?

Many of the strategies above will help reduce stress, by enabling the employee to reduce interruptions, learn new tasks, prioritise their work and tackle larger projects successfully.

Keeping expectations clear and raising concerns early in a positive, constructive way will be more successful than leaving it until there is a serious or disciplinary problem.

Ensure your employees take their breaks, as fatigue can also make it harder to concentrate and can increase anxiety.

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