Differences in sexual development clinic

What is a difference of sexual development?

Some children are born with anatomy of their internal or external sex organs which doesn’t fit exactly into the category of girl or boy.

Some of these differences can be mild such as hypospadias where the boys bits are a under-developed. Some of these differences are severe so that at first the families and doctors cannot be sure whether their child is a boy or a girl. These conditions have previously been called ‘intersex’ and ‘disorders of sexual differentiation’ or ‘ambiguous genitalia’.

What is this appointment for?

Your child has a condition which means they will benefit from the care of a specialist clinic. This clinic is called the differences of sexual development (DSD) clinic.

These conditions can be complicated, confusing and sometimes difficult to talk about.

The clinic brings together doctors and health-care professionals with hormone, surgery and psychology expertise to see your child and family. We will work together with you as a specialist team to make decisions for the best care for your child now and for their future.

Who will we meet?

In the clinic there are quite a lot of team members.

There is a medical consultant who specialises in the causes and the hormones that affect your child, called Professor Nils Krone. He has spent his career dedicated to researching conditions, just like the one your child has, and might talk about important studies that are happening.

The medical team works alongside the surgeons who specialise in urology and gynaecology. Urology focuses on bladder and weeing systems, as well as the penis and testicles. Gynaecology focuses on the female internal and external anatomy. In the team at the moment are Ms Swati Jha, Ms Caroline MacDonald and Professor Prasad Godbole. With these consultants there may be doctors in training.

To support you and your family in the emotional aspects of these conditions we have a clinical psychologist, Dr Rachel Coleman-Smith. You will have an opportunity to meet her the first time you come to clinic and when you feel you might like to see her to discuss any concerns you have.

What will happen during the appointment?

During the appointment you will see a smaller number of the team in a clinic room. We will have thought about which members of the team in particular you need to see at the time of your appointment.

We may need to do a physical examination but will only do this where necessary. Sometimes there may be some tests needed, or some papers for you to read. We may also discuss surgery and ask for your consent when you are ready.

We will not be performing any procedures when you come to clinic, but we might ask for a blood test. We will keep you informed of what we know. Sometimes it takes a little while to get the full details of your child condition.

Do you need us to make any adjustments to support your visit?

Please let us know if there is anything that we might need to take into account to support your visit. Such as, do you have a need for an interpreter or have physical difficulties?

How should I prepare for the appointment?

There is nothing different about this clinic to any other. We do want you to be as empowered and informed as possible to work together with us to make good decisions for your child.

What happens after the appointment?

You will receive a letter summarising what we discussed, found and recommended. That will go to you and your GP to keep everyone in the loop and up to date. It will also tell you when we will next see you.

We might ask you to read some information and return it to us, and we might ask you to give us some feedback.

If you think of any questions write them down and we can talk about them at the next appointment. If you have any specific questions for the team members before your next appointment, get in touch with urology secretaries for surgical questions or Professor Krone’s secretary for hormone or study questions.

What if I can’t attend my clinic appointment?

Please do let the outpatient team know on 0114 305 3691 as soon as possible, ideally a few weeks before so we can fill the space with another family.