Northern Genetics Service

Appointment at the Genetics Clinic

This information leaflet is designed to provide more information about your genetics clinic appointment before you attend.


The Genetics appointmentShow [+]Hide [-]

Why have I been given an appointment at the Genetics Clinic?

We will usually have been asked to see you by one of your doctors. This may be for one of several reasons.

The following are examples of the types of conditions commonly seen at the clinic:

  • Children or adults with delayed development or learning difficulties.
  • Children or adults with multiple medical problems which may be part of a recognised pattern.
  • Individuals (usually adults) with a family history of cancer.
  • Individuals with a known genetic condition inherited in their family, e.g. cystic fibrosis, muscular dystrophy, Huntington’s disease, chromosome abnormality.

Couples with recurrent miscarriage or unexplained infertility.

Can I bring someone with me?

Yes, we would be happy to see you with a friend or any other members of your family. It is important however to be aware that we may discuss sensitive or confidential issues relating to your health.
We would be happy to see other family members during a separate appointment, if appropriate. If you plan to bring several relatives to your appointment it is helpful to let us know in order that we can set aside more time.

What will happen at the clinic?

Everyone who attends an outpatient clinic is under the care of a particular consultant or specialist. Under his or her direction are a number of doctors and genetic nurse counsellors who may also be responsible for your care. Each time you attend an outpatient clinic you will be seen by either the consultant or a member of his/her team.

Every effort will be made to ensure that you are seen by a member of the team as near to your appointment time as possible. It is impossible however to guarantee the exact time as the doctor may be called away to deal with an urgent case or may have to spend longer with another patient than originally thought. Please be prepared in case there are delays.

A member of the genetics team will see you. Using some of the information that you may have already provided, they will draw out your family tree. They may ask you for the following information about your relatives regarding their health, in particular those who may have a genetic condition:

InformationShow [+]Hide [-]

What information might you want from me?

You may be asked for the following information about your relatives regarding their health, in particular those who may have a genetic condition:

  • Full name, including maiden names.
  • Date of birth/age
  • Date and cause of death (if appropriate).
  • Diagnosis: It is helpful if you can find out the medical name of your relative's condition and hospital(s) at which your relative was treated.

What if I cannot get this information?

Please do not worry if you are not able to provide us with all of this information, as any at all will be useful.

What will you do with the information I give you?

The information will remain confidential. We shall talk to you at your appointment about how we use your information and we aim to ensure that you agree with how your information is used. We will also not contact your relatives directly without your permission.

We are obliged to send some of the information about you to the Health Authorities and Primary Care Trusts responsible for your care and the Department of Health. This is in order to manage and plan within the NHS. A copy of this information is also held centrally. Further uses of this centrally held information are strictly controlled by the NHS Information Authority, which takes advice from the Security and Confidentiality Advisory Group, an independent board that reports to the Government Chief Medical Officer. Information held centrally is not used to make any decisions about the treatment or care that you receive from your hospital or GP.

Other questionsShow [+]Hide [-]

Will I be able to ask questions?

Yes, we will endeavor to answer any questions you may have. Some common questions asked are:

  • What is the diagnosis? Is there a name for the condition?
  • What is the chance of inheriting this condition / passing it on to my children?
  • Is there a blood test available?
  • Is there a test available in pregnancy?

Will I have blood taken at this appointment?

There is a possibility we will ask permission to take blood samples. Some tests, if necessary, will be arranged at further appointments.

Will I be asked to be involved in teaching?

As a major teaching hospital the training of nurses, doctors and other health professionals is an important part of our work.

During your visit you may be asked if you are willing to contribute to student training, this may involve students being present during your consultation or treatments. All students are supervised by senior members of staff. However, there is no obligation for you to participate if you would prefer not to. If you decline then this will in no way affect your treatment.

Will I be asked to be involved in research?

Research into new treatments and better ways of providing healthcare is also another important component of our work.

You may be asked if you would agree to participate in a research project during your visit. However, you are under no obligation to take part and you have the right to decline or to withdraw from the research at any time even if you do initially agree.

How long will my appointment take?

Your appointment will usually last between 30 minutes and one hour.

Contact detailsShow [+]Hide [-]

Can I speak to someone before my appointment?

Yes, we would be happy to answer any questions you may have before your appointment.

For enquiries regarding an appointment please contact a member of the appointments team:
telephone number: 0191 241 8740 (8.30am to 5.00pm Monday to Friday)
email: genetics appointments

Please direct all other enquiries to:
Northern Genetic Service
Institute of Genetic Medicine 
Central Parkway
Newcastle upon Tyne
NE1 3BZ
Tel:    0191 241 8600 (8.30am to 5pm Monday to Friday)
Fax:   0191 241 8799
Email: genetics enquiries

 

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