Your referral to the Wessex clinical genetics service

Why you have been referred

Your clinician has asked us to see you because there may be a genetic explanation for a health concern affecting you, your child, or someone in your family. They have sent us relevant information to help us plan your care.

If you are unsure why you were referred, you can check with your clinician, or we can discuss this with you at your appointment.

All referrals are reviewed by our clinical team. A proportion of people referred with a family history of cancer, and other inherited condition do not need a clinic appointment. In these cases, we will write to you with personalised advice and next steps.

Please note: We can only see people who have been formally referred. If you are concerned about a possible genetic condition, please speak to your GP or doctor.

Waiting times

We aim to offer appointments within 18 weeks, though waits are often longer. If you have been waiting a long time, we may:

offer you an appointment at a clinic further from home, or
offer a short-notice cancellation slot.

We prioritise urgent referrals, these may include young children, people who are unwell and people who are pregnant.

It is very helpful if your clinician provides an up-to-date phone number so we can contact you quickly.

If you feel your situation cannot wait, please get in touch with us.

Before your appointment

We review your referral and gather any further information we need.

For all referrals we will review referral and/or family history questionnaire, assess your risk and either provide advice by letter or you will be seen by one of our team.

Accessibility

If you need an interpreter, support with hearing, or other adjustments, please tell us in advance so we can arrange appropriate support.

Your appointment

Who can come

You are welcome to bring a friend or family member for support.
If your child has been referred, it is helpful if both parents are able to attend.

What to bring

A list of any medicines you or your child take (no need to bring the medications themselves).
Your child’s red book (if applicable).
Any information you have about relatives with known genetic conditions or previous test results.
A list of questions you wish to discuss.

If you need to cancel

Please let us know as soon as possible so we can offer the appointment to someone else.
If you do not attend and do not contact us, we will write to you, and you will usually need a new referral before being offered another appointment.

Virtual appointments

In certain circumstances you may be offered a video or telephone appointment. You can find more information on video appointments on the video clinics page.

To help you feel comfortable discussing personal information, we suggest that you find a private space to attend your appointment.

If you have any issues on the day of your appointment, please contact us.

What to expect on the day

Whenever possible, we will see you in the clinic closest to your home. Some specialist clinics take place in Southampton, and we may invite you there if appropriate.

Appointments are usually 40 minutes. Some may take longer; others may finish earlier.

Your appointment may include:

drawing a family tree with people's health details (if this has not been done before the appointment).
a detailed discussion about the problem that has brought you to the clinic.
a physical examination.
a full discussion of the options open to you.

You may be seen by a:

consultant clinical geneticist
specialist registrar
genetic counsellor
specialist nurse
trainee genetic counsellor.

More information about the members of our team can be found in our meet the team pages.

You may be seen by more than one member of the team.

We sometimes have medical students or visiting doctors; we will always ask for your permission for them to be present.

We generally do not take blood samples in clinic. If testing is needed, you may need to arrange for blood to be taken through your local hospital phlebotomy service. Sometimes a saliva sample is sufficient.

Cancer referrals

We understand that you might be worried about your risk of developing cancer. We will do our best to answer your questions and address your concerns.

We will review your family history, assess your personal risk, and discuss options for genetic testing (if appropriate), screening, and managing risk.

General and paediatric referrals

We will discuss your health or your child’s health, review your family history, and may carry out a physical examination. Photographs may be taken for documentation if helpful.

Please do not worry if your child has behavioural or developmental challenges. We are used to seeing a wide range of needs and will do everything we can to put you and your child at ease.

After your appointment

We will usually write to you with a summary of what was discussed and agreed. If you have any questions, please contact us using the details on the top of your letter.

Research

Some patients may be eligible for research studies that can help us understand genetic conditions better. If a study may be suitable for you, we may discuss this during your appointment or a member of our research team may contact you.

Taking part in research is entirely voluntary and not the purpose of your appointment. Your appointment is for your benefit and is to help you.

More information about research can be found on our research page.

Genetic testing

We may arrange genetic testing during or after your appointment. This might involve seeing you again, writing to you, or contacting you by phone.

Genetic testing can take several months, and sometimes longer. Your clinician or genetic counsellor will explain expected timescales; unfortunately, we cannot speed up laboratory processing.

We keep your GP and other relevant doctors informed of results unless you ask us not to for a specific reason.

You do not have to have genetic testing. If you are unsure, we will support you to make the right decision for yourself or your family.

Questions about testing

Please make a list of your questions, and we will address them when we see you in clinic.

If you have a query about a genetic appointment in your local hospital please contact us as we will have booked it.

Further information

For questions about your own health or that of your family, please contact your GP in the first instance.

We do not provide:

paternity testing
interpretation of direct-to-consumer (“home” or “over-the-counter”) genetic tests
ancestry testing.

Frequently asked questions (clinical genetics)