When we first started our journey we had a lot of referrals to many different departments to have so many different tests to find a diagnosis. We were warned that it may take some time but they would make sure we had the support and input from various professionals. At the centre of it all at the beginning was the paediatrician. It was them who said “yes there is something wrong with your child and we need to find out what “. They make all the referrals to the different departments and at first I thought how lucky we were that everything about Roo’s care was coordinated, despite having no overall diagnosis.
Every time we went to see the paediatrician she would spend a long time with us going over everything that’s been happening since she last saw us, every appointment was then written in a report which on the back had a huge list of the various names of professionals who were involved in a certain part of Roo’s life.
The different professionals Roo is under at the moment
But as the years have gone by I am noticing small changes… as more and more tests came back either normal or abnormal but leaving the professionals stumped, some of them started saying they could no longer help as they didn’t know what was wrong leaving us to deal with certain things on our own. We had to fight for certain services, equipment that would make life easier but we got there in the end only because we persevered and didn’t give up being a voice for our son.
Sometimes we get referred to certain professionals who then say after the first appointment , ” we don’t know what to do for the best, his understanding is limited so maybe it would be best to wait till he is older or you get a diagnosis and then they will discharge us. The person who made the original referral would redo it again but the same thing would happen and we just end up going round in circles. If I could afford to go private I would, but alas I cant and I am not sure if the NHS would accept a report from a private consultation as Ive heard of other mums going down this route only to be turned away by the NHS professionals who probably have a grudge against private input.
While most of Roo’s care is coordinated we are finding that when we go to certain appointments they no longer have the regular input from the others so we end up having to explain everything , any new issues, new problems etc.
As a parent of your child, you would expect to be informed of all decisions concerning your child and we have always been informed and given options that we could decided what we wanted for the best but lately even that is starting to disappear…After trying to get a repeat prescription and was denied saying that it had been decided that a break was needed, that we would need to wait till an appointment over 5 wks away to discuss it, panic ensued and Roo’s health nurse who is fantastic in getting in touch with various professionals, making referrals etc who tried to find out for us the reasons behind this decision. She agreed that it was unfair that the decision was made without consulting us, she even hinted that they were stuck and no longer knew what to do with Roo. Where did that leave us? Ive cried , stamped my feet, complained etc but only time will tell if they will listen to me.
Despite being told at the beginning of the year that he would remain on the meds until the next appointment due to personal circumstances with my problematic pregnancy and they have gone back on their word and done the opposite all because his sleep study came back normal. So instead of taking it easy during the last month of my pregnancy I am now constantly stressed, upset seeing the toll its taking on Roo and the rest of us as a family. Its so frustrating as just because he is yet to get a diagnosis doesn’t mean that he no longer needs the medication, that he no longer needs that bit of support , that it doesnt matter how much of an impact it has on his quality of life.
Being undiagnosed should not be a barrier to getting support, it should not mean that parents who already have a lot to deal with have to spend time constantly fighting to ensure their child gets what they badly need. It should not be up to the parents to do all the running around , to be the one trying to co ordinate their child’s care and support.
This year SWAN UK has a Big Ambition – they want to ensure that every one of their families has the support they need , when they need it. They want it to be known that being “undiagnosed” isn’t always temporary as the genetic causes of some conditions may never be known. Every child regardless of whether they have a diagnosis or not should be able to receive high quality co ordinated care and support both in hospital and at home.
To achieve this Big Ambition they need funding as their main grants from the Big Lottery end this year. So raising funds is essential. You can also donate by texting SWAN11 £ (any amount up to £10 ) to 70070