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Employment
Depending on what early symptoms you experience and the kind
of job you do, you may have to think about
how Huntington’s disease will affect your ability to work. Many people with
early symptoms continue in
their employment for a considerable time. This is often a very positive thing
to do because it may be important
to continue working for financial reasons. For some people, continuing to work
can help them to feel positive
about themselves, while for others it is an important way of keeping life as
normal as possible. Some people do need to give up work and there is advice,
later in this section, about how to get help if you decide to do this.
One decision that you are likely to have to make is whether
to tell your employer that you have Huntington’s disease. There are benefits in
doing this.
A good employer can be very supportive and this can be important in ensuring
that you can continue to work for as long as possible. Unfortunately,
some employers may not be so supportive and some people with HD have faced the
difficult experience of losing their job after telling their employer
about their illness. However, if you apply for a job and are asked about your
health, you are obliged to tell your employer about your illness. Making
an untrue statement about your health could lead to disciplinary action or
dismissal if you knowingly give false information.
There is a law that provides some protection for people who
become ill. It is called the Disability Discrimination Act. This law covers
many different things
and you can find out more about it from an organisation called The Disability
Rights Commission. This organisation was set up by the government to give
people who have health problems, advice and information about their rights in employment. They provide some very good leaflets and booklets that can help
you to know your rights. One of the most important things to understand about this law is that after your employer knows about the changes to your health,
they must make what are called ‘reasonable. The Disability Discrimination Act gives workers whose health has changed some important protection. Deciding
to tell your employer that you have Huntington’s Disease is a very individual decision and there are pros and cons.
Employers are required by law to do whatever is reasonable to allow you to continue to work with adjustments’ to your job. This means that your employer
is required to do whatever they reasonably can to allow you to continue to work. Employers are not allowed to end your employment without having done
this. This is just a small example of how an employer might help you to continue to do your job, but it is possible for much larger changes in your job to be
made. Below are some other things that employers can think about if you are having difficulties in your job.
• Changing or reducing the hours that you work
• Changing your job description
• Swapping your duties
• Providing equipment
Employers sometimes need support and there are organisations that can do this. The Disability Employment Officer can give advice to you and your employer
about how you can continue to work. If you have a local
you need in the workplace.
Finally, if you do have to give up work remember that there are many positive alternative ways to use your time. Many people have found volunteering a fulfilling
and rewarding activity. There are many opportunities for education, which can range from learning a new skill like cooking to studying something that interests you.
Your local Advisor may be able to help you find alternative ways to use your time. If you are thinking about giving up work you may wish to find out more about
Benefits. Our Publication Living with Huntingtons Disease
the Early Stages has a detailed section regarding benefits. The
about work. If you are a member of a union, they may be able to provide you with support advice and advocacy.
Driving
Before you have symptoms of Huntington’s disease, you are not under any obligation to inform the Driver Vehicle Licensing Agency (DVLA) if you have a positive
test result. However as soon as symptoms begin you are legally required to tell the DVLA. You can do this using form B1, which is available by telephoning the DVLA.
In many instances you will be able to continue to drive. If you hold a PCV or LGV licence and driving a vehicle is the main part of your job, it is possible that you may
have to give up your licence. This is likely to be decided between you, your employer, your GP and/or your employers’ medical advisor.
Having to give up your job because you are unable to continue to drive does not necessarily mean having to give up driving altogether. Depending on what symptoms you
have and how they affect your ability to drive, you may be able to continue to drive a car. Your GP is likely to be the most important person in giving you advice about this.
Once you have submitted your B1 form, the DVLA will tell you whether you can continue to drive and if the answer is yes, your licence will normally be continued for a
fixed period, for example one or two years. After this period, the DVLA will ask to review your health. Quite often, this is done by completing a questionnaire, which they
will send to you. Sometimes the DVLA may ask you to attend a medical assessment. This is usually with a doctor who will not know you. They will examine you and make
a recommendation to the DVLA about whether they think you should continue to drive.
The DVLA can decide to withdraw your licence if they consider that your health makes you unsafe to drive a car. Only the DVLA can decide to do this. This could happen
after they ask you to attend for an independent medical assessment or it might happen if your own GP considers that your HD symptoms are affecting your ability to drive
safely. Losing your driving licence is difficult. It is the same thing as losing a part of your independence and it can be difficult to accept. You may disagree with the decision to
withdraw your licence and you do have a right to appeal against this decision. After the DVLA notify you that your licence has been withdrawn you have 28 days to lodge an
appeal The Driving Assessment Centre in
contacting them on 0870 600 0301
Getting Help When you Need It
If you have symptoms of Huntington’s disease you may, at some point, feel that you need help with some of the problems that you encounter. It can be difficult to take the
first step in asking for help. Below we have included some guidance that may help you when you are approaching organisations for support. In the next section, we have
included a guide to what help is provided by a wide range of health and social care professionals. It is worth bearing in mind that many of the professional staff that you meet are
likely to know little about Huntington’s disease. Most will meet none or only one or two people with HD in the course of their career. You can help them to do their job by
telling them what you know about HD. It may be worthwhile taking some of the Scottish Huntington’s Association literature with you when you meet them for the first time.
Most professional staff will find this very helpful. Do not be afraid to spend time telling them what you know about the illness. Even if you do not think you know enough, you
may well know more about the disease than anyone else. The chances are that you will still know a lot more than them! It is often worth taking someone with you for moral support
and it is also a good idea to write down a list of questions that you have before any appointment. It is very easy to forget something during your meeting. It is highly likely you will
have contact with several different professional staff. Keeping a journal of your contact with them will help you remember important information about meetings. Throughout your
contact with professional staff don’t lose sight of the fact that you are in charge of the decision-making that goes on in your meetings. The SHA produces a Physician’s guide that
your General Practitioner will find very helpful in knowing
how to support you. Your local Advisory service can give you one or you can
tell your GP to download the Physicians
Guide from the
website.
Scottish Huntingtons Association,
Thistle House,
Tel; 01505 322245,
email: sha-admin@hdscotland.org.uk
The Scottish Huntington's Association is
a Registered Charity: No 121496.