This week I am on a warpath. I feel guilty for not pushing sooner, but I put my trust in others and now I am angry and upset.
My little Star has been in pain for more than thirteen weeks now. And the hospital have done nothing but mess us around and possibly made her worse.
Today I’ve contacted the hospitals Patient Advice and Liaison Service (PALS) not so much to complain but for advice on what to do. It’s been two weeks since Star had her CT scan and all I’ve been told since then was that the physiotherapy had to stop immediately and she was not to take off her collar. We had been working with the physiotherapist really hard on moving her neck and keeping the collar off as long as she could, but it seems that it has made her worse not better. Today I called Star’s consultant’s secretary to see if an appointment had been made for her yet to discuss the CT and what the next plan of action was, but was told that he had no appointments for the next few weeks. So obviously my little girl is unimportant. Of course I have every sympathy for every child who needs a consultant urgently, but now I want treatment for my child and if her consultant won’t see her, then I want her referred to someone who will.
It seems that just because she is alert and otherwise well and carrying on with life as best as she can, then she is not an urgent case. She can be left in pain and discomfort because she’s not making a big fuss. We are the only ones who have to help her lie down in her bed because it hurts too much to do it by herself, we are the only ones who are massaging her gently when it hurts too much, we are the only ones who see her cry because she doesn’t want to wear her collar any more, or cry because she wants the collar back on because it hurts so much.
Or maybe it’s because the consultant does not know what to do to help her. I’ve heard others say what a brilliant consultant he is and I’ve no doubt of that, but this is a rare and complicated condition which he has probably not come across before and doesn’t know how to deal with it. From the way Star has been treated so far I am convinced this is the case. From the beginning it seems that no-one had a clue what to do. She was admitted to hospital but although they talked about different treatments she was eventually discharged having nothing at all, apart from the collar, muscle relaxants and pain killers.
So now I’m at a dark place, I swing from anger to tears and I’m just fed up with my little girl not being given the proper help she needs. I want someone to take action now, someone who knows what to do and how to make my little girl right again. Past medical records on this condition show that if left later than three months it becomes really difficult to treat and can mean a permanent problem. My little girl has been left more than three months now and my fears are growing daily.
If there is by any chance anyone out there who knows of someone treated for rotary subluxation of the atlanto occipital joint, please let me know of your experience.
So sorry to hear this. I hope you get some answers soon 🙁
Thank you Gina, I hope so too x
So sorry to hear this. Feel so angry and upset for you. Yes the consultant might be busy, but is he forgetting he's dealing with a human being, a CHILD, who is in pain?! Have you tried contacting the media? Sometimes it gives them the kick up the backside they need to actually do something. Good luck!
Thanks for your reply and concern Sarah. I think the media would be a last resort, but one to bare in mind. x
Hi Anne, so sorry Star is still going through this and is in pain. Did PALS give you any advice on how to move her treatment forward and quicker? hope you get some help…..would it be worth going back to the gp and asking him for a 2nd opinion or for a referral to GOSH or somewhere else? Love Caroline x
Thanks Caroline x I will hear back from PALS tomorrow afternoon and then decide what I'm going to do next. I'm going to my new GP too to try for a referral. Our previous referral to the orthopaedic hospital was cancelled because they said they couldn't help! Ditto the hydrotherapy, apparently it's no good for necks.
Oh hunny. I can't help you with this but can give my experience of what we did when my daughters heart was failing her and no-one was listening. If she deteriorates or you get worried take her to A&E. They have to do something and can't release a patient unless they have been 'fixed'. Ask for a referral to Guys or GOSH via your GP. Look up who the consultants are at GOSh and Guys and send them an email with a bullet point history of what's happened so far. Kick up a fuss. Go to your GP, use A&E phone everyday. Demand to know what the care plan is. Sadly those who shout loudest tend to be the ones who get listened to. Do not wait for the medical team to make a move. You make them move in to action. Keep a diary, write when you phoned, who you spoke to what they said and flick it all back to them in an email no matter how silly it may sound. If it's in writing they are more careful. Above all never think that you are making a fuss. Trust your self. I was always right in the end and I dread to think what avenues we'd have gone down if I hadn't stuck to my guns xxx
thanks for your reply, lots of advice there. I did think of going back to A&E, sadly they were pretty useless when I first took her, they told me it would fix itself in 48 hours, but I kept going back until they finally referred us to a consultant. I am writing everything down, and clutching onto a letter I received which actually says she had a CT scan which showed the sublux had gone, when she hadn't even had a scan! I'm currently writing all the details necessary to make it easier for my GP to do a referral to GOSH. I'm not normally the type to kick up a fuss, but this is my little girl and I'm actually angry with myself now for letting it get this far, so I'm channelling that to getting her sorted. xx
How old is your little girl? I just stumbled on your blog through Blog Top Sites. I have a 31 year old son with disabilities. We were in a similar situation when he was 13 years old. He was in the hospital in Eugene, Oregon for 19 days before he finally went into respiratory arrest and life flighted to Portland to Oregon Health and Science University. Whenever I think about that time in our lives, I get sick and push it into the back of my head. If I could go back in time, I would stand on the counters at the nurses station and yell or do anything to get the attention we needed. My son was treated like a guinea pig and we were naive enough to let it happen. My suggestion to you is to get your daughter to the closest University Hospital ASAP! They are teaching hospitals and have the best of the best professionals working there. University Hospitals see EVERYTHING and I am certain you will get quality knowledge and care. Please, if I can be of any more help, get in touch with me through my blog http://www.snippetsnstuff.blogspot.com . I blog about my life dealing with disabilities.
thank you for your reply. My little girl is 8 yrs old. I have let the hospital lead the way for the last 3 months, but now I'm standing my ground and making a fuss. I'll let you know how I get on, and pop over to your blog too. I have a disabled 25 yr old son.
Twitter led me to your blog. Even thought I do not know you, this just makes me mad. I have has experiences with doctors putting my child on the back burner too but not to this extent. Your baby needs to be fixed! They do not understand the pain she's in and definatly not the pain your in. Hope you get some answers soon. Love your blog by the way. Im now A new follower. Come visit me sometime. http://lifeawayfromtheofficechair.blogspot.com
thank you, and I will pop over to your blog too. I will keep everyone updated with our progress.
How frustrating for you and poor Start suffering all that time. Really hope and pray it gets sorted quickly and for the pain and discomfort to ease. Much love xxx