Clinical Genetics Service – Family Support
This page aims to answer some common questions that people ask when they are referred to the Clinical Genetics service. At the end of the page there are links to other web sites where more specific information can be found relating to family support. We would encourage anyone who is concerned about their family history to first discuss this with their GP Genetics clinics are held at various sites across the region. Please check your appointment carefully as this will tell you where the appointment will be held. You can contact our appointments section on 0151 802 5001/ 5002.
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Why have I been referred to the genetics clinic?
Some of the reasons for referral include:
- A condition which runs in your family or your partner’s family
- You or your partner have a baby or child with a special combination of features/or a delay in their development. The diagnosis may be uncertain and either you or your doctors are wondering if there may be a genetic cause for your child's problems
- You or your partner have, or carry, a disorder that might be passed on to your children
- You or your partner has experienced problems with pregnancy loss
- You and your partner are close blood relatives
- Particular types of cancer have occurred in several close relatives
- Noteverybody who comes to our clinic has a genetic condition
How can genetic counselling help me?
There are several ways in which the Clinical Geneticist (doctor) and Genetic Counsellor can help answer your concerns.
Some of these are:
- Making or confirming a diagnosis where possible
- Providing information about the condition
- Discussing the risk that you may be affected by the condition in the future
- Discussing the risk that a future child may be affected by the condition if it occurs in the family
- Explaining the type of testing or screening available
- Talking about ways of coping with the condition and the medical and social support available to you
Will I be given advice?
Genetic counselling can help you make well-informed decisions in the future. Many people assume that they will be advised or told what to do when faced with difficult decisions. Instead we concentrate on providing information and discussing the options to help people make the best decision for themselves.
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A Genetic Counsellor will usually contact you to arrange to visit you at home or talk with you over the telephone. This visit or telephone call allows the Genetic Counsellor to talk about any concerns or questions you may have. It also enables us to gather together any relevant details about your family history and discuss the referral with you. This helps us to provide you with accurate information in clinic.
Following the visit or telephone call you will usually be offered a clinic appointment to see a Genetic Counsellor and/or Clinical Geneticist (a doctor with experience of a wide range of genetic conditions and any specialist training which may be required). If you have hearing difficulties or your first language is not English, please let us know and we can arrange an interpreter. We can provide one for both the home visit and clinic appointment.
What family details are helpful?
For certain genetic conditions it is sometimes helpful to have the following information about close relatives or affected individuals.
- Full name
- Date of Birth
- Address including post code
- Name, address of GP if appropriate
- The diagnosis given
- When and where diagnosed or treated
- We will not ask for medical records for any relative without permission and will not contact any of your relatives unless you specifically ask us to do so. In certain cases it is often helpful to borrow family photographs which will of course be returned to you when you come to clinic.
What will happen when I come to clinic?
Please check your appointment letter carefully for the location of the clinic. Your partner, another relative or friend is welcome to come with you. The Clinical Geneticist and/or Genetic Counsellor will review the family details gathered prior to the clinic. They will discuss your concerns with you. It is sometimes necessary for the doctor to gather more information and/or tests.
When there is a genetic condition within the family, this will be explained and you are encouraged to ask questions. You may find it helpful to write these questions down beforehand. To allow plenty of time for this, each clinic appointment is at least half an hour long. It is therefore important that you let us know as soon as possible if you are unable to come to the clinic so that we can allocate the appointment to someone else.
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What will happen afterwards?
You may be offered a follow-up appointment and you are welcome to telephone the Genetic Counsellors with any questions or concerns at any time. You will usually receive a letter summarising what has been discussed. If you agree we will send a copy of this letter to your GP and to any other specialists who are looking after you.
For further information: Tel: 0151 802 5001
Contact a Family: http://www.cafamily.org.uk/
Exec Director: Steve Hannigan steve@climb.org.uk
Genetic Alliance: http://www.geneticalliance.org/
Gilda Radner Familial Ovarian Cancer Registry: http://www.ovariancancer.com
Rare Chromosome Disorder Support and Information: http://www.chromodisorder.org/
The Genetic Interest Group: http://www.gig.org
Down's Syndrome Association: http://www.downs-syndrome.org.uk
Unique - The Rare Chromosome Disorder Support Group http://www.rarechromo.org
Antenatal Results and Choice
ARC, 73-75 Charlotte Street, London, W1P 1LB;
Tel 020 7631 0285 Helpline, Tel/Fax 020 7631 0280m, e-mail: arcsatfa@aol.com
Association for Spina Bifida and Hydrocephalus: http://www.asbah.org/
Areas Served : Hospitals /Trusts served by Medical Genetics
- Aintree Hospitals
- Walton Centre for Neurology
- Alder Hey Children's Hospital (AHCH)
- Countess of Chester Hospital (COC)
- Halton General Hospital
- Isle of Man
- Leighton Hospital
-
Liverpool Women's Hospital (LWH)
- Clinical Genetics
- Others - North Mersey Community
- Southport and Ormskirk Hospital
- Royal Liverpool University Hospitals (RLUH)
- St Helens & Knowsley Community
- St Helens & Knowsley Hospital
- Southport & Formby Hospital
- Warrington Hospital
- Warrington Community
- Whiston Hospital
- Wirral Hospitals
- GP's / Private patients
- Other Local Trusts
- Out of Region
Professional Links
British Society of Human Genetics
http://www.bshg.org.uk
Association of Genetic Nurses and Counsellors
http://www.agnc.org.uk
