This page aims to answer some common questions that people ask when they are referred to the genetics clinic. 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 who will be able to discuss the concern with you.

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 252 5238.

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 partners' 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 have experienced problems with pregnancy loss .
  
  
• You and your partner are close blood relatives.
  
  
• Particular types of cancer have 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 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 future children 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.
  
  
• Not everybody who comes to our clinic has a genetic condition.

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.

What will happen now?
The genetic associate (an experienced nurse with specialist training in genetic counselling) will usually contact you to arrange to visit at home or talk with you over the telephone. This visit or telephone call allows the genetic associate to ask you for details about your family. This helps us to provide you with accurate information in clinic.

After the visit or telephone call you will receive your clinic appointment to see a genetic associate or clinical geneticist ( a doctor with experience with a wide range of genetic conditions and in 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 postcode
  
  
• 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 or another relative or friend is welcome to come with you. The clinical geneticist and/or genetic associate 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.

What will happen afterwards?
You may be offered a follow-up appointment and you are welcome to telephone the genetic associates, 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 252 5238

Family Support Organisations

Contact a Family:
https://www.cafamily.org.uk/

Children Living with Inherited Metabolic Diseases - Climb:
https://www.climb.org.uk/
Executive Director: Steve Hannigan steve@climb.org.uk

Rare Genetic Disorders in Children:
https://mcrcr2.med.nyu.edu/murphp01/homenew.htm

Genetic Allianace:
https://www.geneticalliance.org/

Gilda Radner Familial Ovarian Cancer Registry:
https://www.ovariancancer.com

Rare Chromosome Disorder Support and Information:
https://www.chromodisorder.org/

The Genetic Interest Group:
https://www.gig.org.uk/

National Institute of Neurological Disorders and Stroke:
https://www.ninds.nih.gov/

Down's Syndrome Association:
https://www.downs-syndrome.org.uk

Unique - The Rare Chromosome Disorder Support Group:
https://www.rarechromo.org

Antenatal Results and Choice
ARC, 73-75 Charlotte Street ,
London, W1P 1LB;
Tel 020 7631 0285 Helpline
Tel/Fax 020 7631 0280.
e-mail: arcsatfa@aol.com

Association for Spina Bifida and Hydrocephalus:
https://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
https://www.bshg.org.uk

Association of Genetic Nurses and Counsellors
https://www.agnc.org.uk