The Poland Syndrome clinics are currently held at Waterfall House at Birmingham Children’s Hospital.
There is a convenient carpark directly opposite and its a 5 minute walk from Birmingham Snow Hill train station. When you enter the building, it’s so spacious and calm, just a really lovely setting for kids doesn’t feel clinical in any way at all, which is really reassuring.
You enter and directly to your left are outpatients, go through the door and book yourself in at reception. PIP-UK team will be in the waiting room to greet you and give you any information you need, we also have some activities to keep the kids occupied while they wait too.
WHAT HAPPENS WHEN YOU GO INTO THE APPOINTMENT
When you go in to see the doctors, there will be several doctors in the room, ordinarily you will see a hand surgeon, a chest surgeon and a thoracic surgeon as well. And further down the line, hopefully we’ll have some psychology support in there too. They may want to send your child for X rays, or scans, and they will take place in another part of the hospital. The team of doctors are so lovely and welcoming.
What sets this clinic apart and makes it a specialist Poland Syndrome Clinic, is they really care about the whole of your child, not just one bit of their body, but how their whole body is affected by Poland syndrome.
They will want to take a look at your child’s hand and chest, so make sure our child is prepared for this so they can be as comfortable as possible. If they are pre-teen/teen this can be the most embarrassing part, so maybe talk through it before hand if that would be helpful to your child to be prepared.
If you do go off for an x-ray or a scan, it’s a bit of a walk into the main hospital. The main hospital is really busy and they are looking after lots of poorly children around and about the x-ray and MRI department. Being around lots of really poorly children can be a little upsetting, but there is a tv in the waiting area there and it was playing Toy Story when we were there, so that’s a welcome distraction. You will be seen in order of clinical need here, so it make take a little while if they have more urgent cases to see first.
WHAT DIAGNOSTIC TESTS AND TREATMENTS CAN YOU EXPECT AT THE POLAND SYNDROME CLINIC?
The doctors at Birmingham, are building a new way to diagnose and treat Poland Syndrome as this has never existed for Poland Syndrome before. If your child is older, this may be different to what you have experienced before. In addition to X rays, there may be other tests, these will be age dependent and based on the individual child’s needs. We just want to make you aware of all the possible options that the doctors may require for your child.
These may include a chest or hand X-ray, an echocardiogram which is like an ultrasound of the heart area just to check all that they may need to go and have some medical photos taken of their hand and chest so they can track development in the area.
Another option is an abdominal ultrasound. This is to check out the kidneys primarily and just make sure everything’s as it should be. It’s a really rare symptom of Poland syndrome for the kidneys to be affected. But at the right age, the doctors will be checking that. If you haven’t already seen a geneticist, then they will refer to a geneticist and in the future referrals for well being support including psychology.
The doctors will talk to you and your child about age appropriate reconstruction. They will discuss what’s available and the recommended age for going ahead with these options.
The Poland Syndrome Clinic offers a thorough check and all of this won’t happen in that one appointment. You won’t be overwhelmed with tests and checks right there and then they will look at what’s most important on the day. And then next time you come back, you might do some more. So don’t be concerned that you’re going to be there all day doing all these tests, it’s not like that it will be broken down into parts.
HOW TO GET AN APPOINTMENT TO THE POLAND SYNDROME CLINIC
To get an appointment for the Poland Syndrome Clinic, you just need to go to your GP, tell them that your child’s got Poland syndrome and you need a referral to the specialist clinic or Birmingham’s Children’s Hospital. They can make a direct referral to Dr. Yvonne Wilson, Dr. Andrea Jester and Dr Giampiero Soccoroso. You should get a letter through within a month to say that they’ve got your referral and then an appointment letter will follow.
If you have any issues with the GP during the referral, please get in touch with us and we can help advocate with the doctor for you.
MY PERSONAL EXPERIENCE WITH MY SON
When my son recently had his appointment, he found it a good experience overall. He was a bit bored because he had to spend longer than he liked there due to me being at the Poland Syndrome Clinic all day, but he liked the doctors. He really took on board what they said to him, they talked to him about all sorts of different things including different types of sports he can focus on to work on upper body strength. He really appreciated the way they talked to him and their approach and he felt really at ease at the appointment and nothing that they said worried him in any way and felt really, really comfortable with them, they are a great team.
Sam Fillingham, CEO of PIP-UK
It’s an amazing service, my daughter was lucky to have been seen in the first clinic. I strongly recommend anyone that has a child with Poland syndrome get referred to this clinic.
They will look at your child as a whole rather than having separate appointments to look at each individual concern and never linking them and things getting missed.
Well done on starting a forward thinking clinic.