Guy’s Hospital First Klinefelter’s Syndrome (KS/XXY) Adolescent Clinic

The Guys hospital multidisciplinary team (MDT) clinic has been running since early 2019.  It is a half-day clinic where pre-booked patients see a number of specialists at the clinic on the same day instead of having to visit different specialists at different sites on different dates.

The specialists usually include experts in genetics, endocrinology, urology, reproductive medicine and radiology.  A nurse counsellor is also usually available.

The feedback received from patients and medics has been very positive; it has been regarded as a great success.

The hospital is very accessible to public transport –  a very handy landmark is The Shard which is right next door to Guys hospital, towering much higher than the hospital.  The nearest train is London Bridge and the hospital is literally a stones throw from the station. and the clinic easy to locate within the hospital.  Like many specialist clinics it only takes place on certain days and therefore you must have an appointment.

Patients simply register at reception on arrival and have any  necessary blood test or measurements taken. They are assigned a consulting room equipped with comfortable chairs where there is plenty of space to put bags and get comfortable. The various professionals visit them in turn within the privacy the room. Learning about Klinefelter’s Syndrome as a patient or loved one (e.g. parents or partner) can be a complex task, even for the most intelligent people but here at least you don’t have to go over your history multiple times or try to remember how the different specialists link together.

To date I have attended several of these clinics to act as a Patient Liaison; to be a friendly face, a representative of the KSA charity, someone with a bit of knowledge from a patient perspective and of course someone that has Klinefelter’s Syndrome!

I have a friendly chat with those attending the meeting, telling the story of my diagnosis and I often find often that  this helps others open up about theirs, particularly if like me, fertility investigations  led to their diagnosis. I also tell them about the KSA  – what it has to offer in terms of support, the web, activity weekends, conference etc. My aim is to build rapport and create a warm and relaxed environment in which the patient and whoever is accompanying them is able to ask me questions and have an open conversation.

Often there is plenty of chatter and dialogue. Of course some people are less open to discussion or maybe perhaps shy and in those cases I don’t push people, I simply create an environment in which they can feel comfortable to be speaking or quiet as they wish.

In most cases I tend to get a knock at the door from the professionals letting me know that my time is up and it’s time for the next MDT member to come in!

Up until now the clinic has been for adult patients but, on Wednesday, 5th August 2020, the first young persons clinic for adolescents, took place. On that day the average age of the patients was 16 years old. Some were accompanied by family members, some by support workers.

I had been due to attend but, due to the COVID-19 situation, I did not want to travel to London on the train so it was agreed I could ‘attend’ via a Zoom videom meeting. This was a first for the clinic and I’m pleased to say it went very well!! It was easy for the participants to speak to me; it really was as if I was there in their own private consulting room.

 

All of the members of the clinic each with their own short video on Twitter. Here is my contribution: https://twitter.com/uro_news/status/1293976239414419462?s=21

If you are considering visiting the clinic,  have a look at the video clips on Twitter that the clinicians and specialists provided about their own area of expertise. I think this is a really great way of giving patients and family members an understanding of what the clinic looks like and how it functions.

The clinic does have its own dedicated website which I think is a great indicator of their commitment to providing the clinic and improving support for patients:  https://theklinefeltersyndromeclinic.com/contact

Additional information can be found on the Guys hospital website too:  https://guysstthomashospital.newsweaver.co.uk/Connect/1n6g18gcmoe

If you would like more general information you’re welcome to approach me via Facebook if you wish.

Raj

Tet Yap, clinic leader said:

“Raj had the most wonderful feedback from the young person’s clinic carers, parents and patients – thank you for being such a good spokesperson!”

 

 

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