What will happen after you have been referred?
Why is it called genetic counselling?
It is called genetic counselling because as well as providing information about genetic conditions, we are able to discuss any options available to individuals and their families in a non-directive way. We will not be advising you on what you should or should not do but will try to provide an environment within which you can make the best decisions for your own particular situation. It is not a therapeutic counselling service.
What will happen now?
The number of appointments you have and whether they are with a genetic counsellor or a specialist genetic doctor (Clinical Geneticist) varies depending upon the genetic condition, whether there is a clear diagnosis and your particular circumstances.
For appointments at a genetic clinic
- Please check your appointment letter for the location of the clinic as we have a number of different clinics and different hospitals.
- Your partner or another relative or friend is welcome to come with you.
- If you need any type of interpreter, please let us know; we can provide one for home visits, clinic appointments and telephone contacts.
- A clinic appointment will usually last for between 45 minutes to 1 hour so that there is plenty of time to answer your questions.
- If you are 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. Late cancellations cannot be offered to another patient leading to a wasted appointment.
First contact
We strive to see patients within 18 weeks. The initial contact may be with a genetic counsellor or genetic information nurse. You will either get a telephone call or receive an appointment by post for you to come straight to the clinic. In certain circumstances we may arrange to visit you at home. In this appointment you will be able to tell us your view of the referral and what questions you would like us to try and answer. To help to give you accurate information there will also be a detailed discussion about any relevant medical and family history. Sometimes at this appointment information about a genetic condition and the options available will be given and genetic tests may be carried out. The time taken to complete a genetic test will vary depending on what has been offered. Genetic testing is becoming increasingly complex as our understanding of the genetic causes of health issues improves over time. We would often look at tens or hundreds of genes at once (known as a 'panel test'). Your clinician can tell you how long they expect your test/your child's test to take and make a plan for how you will contacted about any results. It is not unusual for it to be several months until testing is complete and a result is available.
Further appointments
An appointment with a specialist genetic doctor is always needed if a medical examination is required to try to make a diagnosis of a genetic condition. At this appointment the doctor will review the information you gave to the genetic counsellor/genetic information nurse and they may ask to examine you. Sometimes it is necessary for the doctor to gather more information or to arrange tests.
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
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 directly without you having discussed this with them first, and will not ask for the medical records of relatives without their permission.
What will happen afterwards?
You may be offered a follow-up appointment either with a genetic counsellor or a genetics doctor. You will also be sent a letter to summarise what has been discussed. If you agree, we will send a copy to your GP and any other specialists who are looking after you.
Patient information and leaflets
You may be given an information leaflet in your appointment to help explain the genetic condition which is being discussed. Many of these leaflets also include details of patient support groups and sources of more information and are reviewed regularly by our team.
A list of leaflets currently available can be found here.
Additional Resources for Families
NottAlone
Local mental health advice and help for young people in Nottingham and Nottinghamshire. If you are aged under 25, are a parent or carer, or a professional that supports young people, you can find information, advice and where to go to get help locally.
Nottingham Children’s Hospital Community Paediatric leaflets
www.nuh.nhs.uk/childrens-leaflets?smbfolder=964
- Help for Having a Healthy Headspace: concerns about a child or young person’s mental health or emotions.
- Leaflets on ADHD, Autism Spectrum Disorder, Tics/Tourette’s
- Sleep difficulties, and common medical concerns like constipation etc.
Nottingham CITY: Ask Lion
Excellent and easy to use site with information about organisations and services in the City of Nottingham. Where to get help with health, finances, housing, Special Educational Needs and Disabilities (SEND), support groups, and things to do.
Nottinghamshire COUNTY: Notts Help Yourself
Excellent and easy to use site with information about organisations and services in the County. Where to get help with health, finances, housing, Special Educational Needs and Disabilities (SEND), support groups, and things to do.
Ask us Nottinghamshire
Tel: 0115 804 1740 enquiries@askusnotts.org.uk
Impartial information, advice and support for parents / carers about Education and Special Educational Needs (SEND) from 0 - 25 years.
Health For Teens
https://www.healthforteens.co.uk/
Website designed for teenagers that covers everything from relationships and sexual health to school to mental health to lifestyle. It also has extra sections for those in Leicestershire and Nottinghamshire.
Health For Kids
Has a section for adults (grown-ups) and a section for children. Has information and advice about health worries in children as well as extra sections for those living in the Nottingham area www.healthforkids.co.uk and www.healthforkids.co.uk/grownups/
Medicines For Children
www.medicinesforchildren.org.uk
Information for parents and young people about medicines, side effects, and other important useful information. Type in the name of the medicine or type of medicine to find the one you are looking for. Includes drugs for epilepsy, ADHD etc but also how to give medicines like tablets, drops, sprays etc.