What Will Happen

Why have I been referred?

Some of the reasons for being referred to Genetic Medicine include:

• There is a condition that runs in your family or your partner's family.
• You or your partner have a child with a physical or developmental problem.
• You or your partner have a disorder that may be passed on to your children.
• You or your partner have experienced pregnancy loss.
• A particular type of cancer has occurred in several close relatives.

How can genetic counselling help me?

There are several ways in which the clinical geneticist (doctor) and genetic associate (counsellor) can help to answer your concerns. Some of these are:

• Making or confirming a diagnosis.
• Providing information about the condition.
• Discussing the risk that you may be affected by the condition in the future.
• Discussing the risk that future children may be affected with the condition, if it already occurs in your family.
• Explaining the types of tests available.
• Talking about ways of coping with the condition and the medical and social support available to you.

Note that not everyone who comes to our clinic has a genetic condition.

Will I be given advice?

Genetic counselling can help you to make well informed decisions for the future. Many people assume that the doctor will tell or advise them what to do when faced with difficult decisions. Instead, we concentrate on providing information and discussing options to help people to make the best decisions for themselves.

What will happen now?

The genetic counsellor will usually talk with you on the telephone. Sometimes, however, we arrange an appointment for you to come straight to the clinic, or we arrange to visit you at home.

This discussion allows time to ask you for details about your family. This helps us to give you accurate information in the clinic. It also gives you time to talk about any concerns you have before you come to the clinic.

After the visit or telephone call, you will receive your clinic appointment letter to see a genetic counsellor or clinical geneticist (doctor). If you need an interpreter, please let us know; we can provide one for both the home visit and the clinic.

What family details are helpful?

For as many close relatives as possible, and for any other affected members of your family, it is helpful for us to know:

• Their full name.
• Their date of birth.
• Their address.
• Their GP's name and address.

If appropriate, it may also be helpful to know:

• The diagnosis they were given.
• When and where they were diagnosed or treated.

Please note that we will not contact any of your relatives unless you specifically ask us to do so, and will will not ask for the medical records of relatives without permission.

What will happen when I come to the clinic?

Please check your appointment letter for the location of the clinic. Your partner or another relative or friend is welcome to come with you.

The clinical geneticist (doctor) and/or genetic counsellor will discuss your concerns with you. They will review the family details you discussed with the genetic associate before the clinic. If appropriate, the doctor may want to examine you. Sometimes it's necessary for the doctor to gather more information or to arrange tests.

When there is a genetic disease in the family, the condition will be explained and you are encouraged to ask questions. You may find it helpful to write these down beforehand.

To allow plenty of time for your appointment, each clinic appointment is at least half an hour. If you're unable to come, it is very important that you let us know as soon as possible so that we can give your appointment to someone else.

What will happen afterwards?

You may be offered a follow-up appointment. You will also be sent a letter to summarize what has been discussed. If you agree, we will send a copy to your GP and any other specialists who are looking after you.