I feel now is the time to share our whole ordeal with the Hospital. When Melody came out of intensive care in August and we were waiting for a bed at her local hospital a certain doctor got involved in Melody’s Care. The reason she got involved is because melodys liver specialist couldn’t give Melody her chemo drug so asked this certain doctor to see Melody as she has some kind of inflammatory process that happens she was deemed the best person. This is when our nightmare began. Because of melody’s flare up symptoms don’t fit into a box or make any sense this doctor accused us of making it all up. She said in a meeting with our social workers that I had always refused to try and lower melodys pain relief, she said melodys intestines/gut was normal, she said that Melody doesn’t internally bleed and Melody doesn’t get pain it’s all behaviour. We was shocked, this was all being said the first time of meeting our two new Social workers. We argued back. Said how there is evidence of everything we have said being true in several different hospitals. Telling her that we wasn’t the ones that put her on all these drugs, that Great Ormond Street did and they wouldn’t of put her on these strong drugs and form of feeding if Melody didn’t need any of it, if Melody was deemed normal as she was saying. She told us how she was gonna remove melodys pain relief as Melody doesn’t get Pain, we didn’t agree with the way she wanted to try it so we told her we wouldn’t agree to that way but we would agree to try it a different way. This was all being said in front of Melody who understands everything. This doctor then told my husband that she doesn’t have to take what he says into consideration as he is only Melody’s step dad. Let me add again that this doctor was saying this in front of Melody who has believed since the age of 2 that my husband is her real dad. This doctor broke the news to my daughter without our consent, without a second thought as to how Melody would deal with that news. At that point the social workers took us all to another room away from Melody. This doctor then informed me that if I didn’t consent to them removing Melody’s medications they would take me to court to remove my Parental Rights so they could do it. This was all thrown at us while I was heavily pregnant. So our social Worker told us we had to go along with everything the Hospital wanted to do to Melody even though we knew she would suffer from it. We had no other option but to comply. But we was told by the Social Worker to video melody’s Pain episodes and take pictures of her symptoms and bleeding so we had evidence. We put in an official complaint against this doctor at that point. The stress really got to me so I had to spend a few nights at home, so my husband stayed with her one night and then the next night he went in he was told he couldn’t stay overnight anymore as he didn’t have Parental Rights on Melody and he was only now allowed to visit in the visitor hours not the parents hours. This broke his heart, he has been melodys Daddy for 8 years. He gave up his career to care for her. So he had to drive home to collect me and take me back in. This was at 10pm. I asked to speak to the bed manager to find out who had put this in place and I was told it was the safeguarding lead, low and behold the safeguarding lead happens to be this doctor in question. I then find out that she has a special interest and chairs meeting at the hospital about parents fabricating children’s illnesses. We then put in a second official complaint against her and told the trust we didn’t want to work with her but yet again we had no choice, we got threatened with court so we had to comply. When Melody got a Pain episode she now had to follow their plan. When at home if she got Pain we would give her a push of her morphine/ketamine and it would work in 5 minutes but this wasn’t allowed anymore. Instead when she gets Pain she now has to have buscapan, then after 15 minutes if the pain still there then she has to have paracetamol and then after another 15 minutes they seek advice from the Pain team and then give her a push. Melody is left in Pain episodes for at least 45 minutes at a time. Sometimes their pain relief works, but not all the time which is a huge worry as they have now taken away the ketamine and nearly taken away her morphine. We have a Care Team that supports us with Melody 24 hours a day. Our care team couldn’t handle seeing Melody in so much pain, having to restrain her for long periods of time, Melody crying herself to sleep due to the pain so they felt they couldn’t work at the hospital with her due to this. They was so upset as they’ve been with Melody for years. I then had my baby so Melody was left totally in the hospital’s care for a week without us and our team. Upon returning Melody was covered in bruises top to toe and the hospital couldn’t tell me how she had done them even though they had to supply her 1:1 Care. Nothing was documented at all, no body maps done, nothing. Melody had also lost so much weight. Going from 32kg at home with us to 24 kg in their care. A lighter was even found on the bottom of melodys bed when she requires oxygen, again nothing was documented, if the lighter had exploded it could of killed her and potentially the whole hospital. We expressed our concerns but get seen as difficult parents. Of course we are gonna be classed as difficult parents as we wasn’t gonna sit there and say nothing and let Melody be treated this way. The Social workers said there is nothing they can do as the Hospital are professionals. Then the Hospital started doing things to Melody without informing me or getting my consent. They changed her jejunostomy button to a button that was too small for Melody for no reason. They didn’t inform me at all. I found out from my care team. This happened when no one was present. Again nothing was documented, I don’t know who did it or why they did it or when they did it, nothing. It was all done against my knowledge. they tried to take blood from Melody through a vein without asking or informing me again. It was stopped by a member of my care team. There is no need to take blood this way, she has a fully working double Lyman Hickman line to take blood from to avoid going into her veins as they just collapse. Melody already lost one line there due to a nurse being too forceful with it resulting in the line splitting and Melody requiring extra surgery to fit a new line and remove the broken one. They removed her oxygen without informing me, when they didnt even understand why she was on it in the first place, they didnt read her history. We had been asking for months for Melody to have Physiotherapy, occupational therapy, speech and language therapy, play therapy and the use of the hospital school. They provided her with nothing. We wasn’t listened to. Only now the social Worker is involved they have started providing Melody with Physio, OT and play therapy. But damage has been done. The muscles at the back of melodys legs have now become too tight so Melody now can’t stretch her legs out straight. Not sure how long it will take to fix that. The hospital still raise concerns that we are not complying, that we raise our voices at them, that we are videoing melody and posting online. They raised these as safeguarding concerns. There is no safeguarding concerns and after a meeting 6 weeks ago we was found clear. All we are doing is trying to give Melody the best life possible, Pain free. Melody’s steroids, everytime we get to a certain level her flare up symptoms come back. This has happened for years, but this Hospital keep blaming it on other things, like medication not being done right, the steroids then get increased and Melody starts to do well again so then they start lowering them again and Melody gets the same symptoms appear again, the hospital then blames it on something else again like pneumonia and so the steroids are increased again and then Melody starts to do well again. 5 months this has been happening for now and still the Hospital say she don’t need steroids. They promised to scope her when the symptoms show but they always end up increasing the steroids so then they can’t scope her and then they get to do it again and again. How many times are they gonna do this? We have asked for their plans in writing but still to this day we don’t have anything in writing. They stopped Melody going on her 3rd date with Ed. They say they are doing all this to make life easier for us at home and to help Melody’s liver, but in doing so they are taking away her quality of life. We could lose Melody at anytime due to her Rett syndrome alone, let alone her other problems on top and they are holding her prisoner in the hospital. We don’t even know if we will get her home for 3 days over Christmas as again they won’t make any plans. My boys are missing her like crazy. My 5 year old keeps breaking down over it. When is someone gonna say enough is enough? Still the trust hasn’t got back to us about our official complaints, we go to pals and they say they’ll get back to us and don’t. We sent two emails to the chief executive including a video of Melody in Pain but he hasn’t acknowledged us. We had no problems with the hospital at all until this doctor got involved. Their intensive care unit and team is amazing. But now We don’t know where else to turn. We don’t know what to do for the best. Do we do what they say? Or Do we continue to fight it? We have tried every solicitor possible but still nothing. If we don’t comply with the Hospital my rights will be taken away. All we want is our little girl home before it’s too late. Is that really too much to ask for?

Help fund a solicitor to fight for Melody. To get her the treatment and medictions she needs to keep her pain free and stop her symptoms and bleeding. To get melody home with her family who adore and love her so very much. Please visit her page to read her incredible story: https://m.facebook.com/Melodyinmind/