Become an Insider

THR teenager hip replacement after SUFE

May not be as easy as it all sounds.
Took jaz to see doctor this afternoon. She said she will try her best to refer jasmine to our choice but because of cross- border nhs she has to get permission from the health board and may not get it. I've looked online for young adult hip specialist in wales and only one comes up, Phil Thomas, who I'm sure was the last person jaz saw a month ago and works in Cardiff hospital.
Might be banging head against wall for a long time
 
I know you're working with Jo on your daughter's case, but I just wanted to post and offer my admiration for your determination and tenacity in getting help. Sadly, sometimes we must go to great lengths to find the right doctor for a specific case. Please don't ever give up! It will be worth it in the end. And Josephine is just the right person to have on your side going forward. Please tell your daughter that all of the BoneSmart family is her cheering squad now. You may not hear from everyone that is following your story, but I can assure you that you have people all over the world praying for you and hoping that a resolution can be found soon. If you want proof of that, just keep an eye on the "read" count for your thread on the Hip Pre-Op Forum index page. Since yesterday, your thread has had over 140 views.
 
Just wanted to stop by and offer my support to your and your daughter. Hoping that you find answers to all your questions, and your daughter is able to receive the care she needs and deserves. :console2:
 
wow, had no idea about post views ! thank you so much for the support, it means a great deal. I've looked many times on forums and barely found many recent posts and even less regarding teenagers.
Jo has been more helpful to us in just one day and given me such good advice I cant thank her enough. I doubt anything will happen anytime soon but I'm absolutely going to make myself a royal pain in the butt for all of her doctors in the hope she can have a better quality of life as soon as possible.
 
jasminesmom said:
She said she will try her best to refer jasmine to our choice but because of cross- border nhs she has to get permission from the health board and may not get it.
Click to expand...
Did you read the Patient's Charter I gave you a link to? It's your right by law to see who ever you choose. It's no longer a question of the PCT agreeing to fund it. Plus your daughter has a significantly specialised condition and if you are not satisfied with the level of expertise in your area, that is another reason for you to have treatment outside your area. If they say no, appeal and appeal and appeal until they say yes!
 
Yes I did read it and said to the GP that we knew out rights.. She didn't look convinced and said she'd try her hardest but couldn't guarantee a yes. Will certainly appeal it if needed
 
Amazing - yet another GP unfamiliar with the Patient's Charter!
 
Update.
After talking to jasmines physiotherapist last week, who spoke to the original orthopaedic surgeon who referred jasmine from swansea to Cardiff. He telephoned Cardiff and relayed my concerns and wishes for her to be seen by someone else. Email back to physiotherapist asking me to call her surgeon. Spoke to her this morning and she has asked a Mr. Fergal Monsell (already read about him) to see jasmine in December. I expressed my frustration with the lack of communication and relevant information given to us, leaving us feeling that jasmine has been left on a shelf and left to suffer. It was a good conversation and I had some of my questions answered. Her surgeon wants to give jasmine a hip replacement as soon as she has stopped growing which shouldn't be long but has to have her colleague Philip Thomas agree when this is likely to be. She's already reached the height of both her father and myself and her and has been having periods for 18month now. There's an approx expected 2.5 year growth after starting periods, so I'm told. Hopefully by making such a fuss to anyone that would listen to me, jasmine will be sorted out as soon as its possible with better communication from the professionals involved with her.
I look forward to her Decembers appointment
 
Neither Monsell nor Philip Thomas show upon the joint registry which leads me to suppose they don't do many hip replacements. Please do ask the one planning to do this how many THRs he has done in the last year and if it's less than 60 ask to see someone else. You don't want to take any risks.
 
Our health board has given us permission for us to see your recommended specialist! Very happy about it.
Also, jasmine's Physio therapist has resumed her case and is see jasmine weekly for hydro pool therapy and has referred jaz to the symptom control team for her pain.
Things are looking a bit brighter and at the very least jaz feels that she's not being ignored and left to limp in pain. Not sure what the outcome will be but its a good start x
 
Yesterday we travelled down to Exeter to see Mr Wilson.. What a lovely amazing man! We were there for hours and jasmine got to tell her side of her story, he put her at ease so she could express herself. After having another X-ray, Mr Wilson sat jasmine down and showed her the state of her hip, which looked bad even to our u trained eyes.. He asked jasmine what bothered her most, leg length or the pain, she said hands down the pain.
He said it was very unusual for someone so young to have a hip replacement but she desperatly needed one looking at her xrays and knowing how much pain she is in daily. He was confident that she had stopped growing and said there was truly no point in waiting to help her. Jasmine will be having a new hip this spring, down in Exeter. We will have to apply for further funding, which i will fight tooth and nail for... I can't thank you enough Josephine for all of your help and recommendation that lead us to here. I saw the strain lift from her face and she cried with relief as soon as we left the hospital. From the bottom of my heart I am grateful for the support we have recieved from family, friends, school, strangers, dr's, physiotherapists and Josephine on this forum. My beautiful little girl (young lady now) has been the bravest girl who has battled her way through her problem for the past two years and had almost given up hope for a normal teenage life.. Mr m Wilson, you rock !!!
 
[Bonesmart.org] teenager hip replacement after SUFE
I am so happy for Jasmine and for you. God bless you both.

Take care and keep us posted. We care.
[Bonesmart.org] teenager hip replacement after SUFE
 
We wouldn't be at this point without you Josephine, we can't thank you enough!!!
We will keep you posted xx
Hope everyone has a truly wonderful christmas - ours will be our best xx xx xx xx
 
Hi @jasminesmom I have just read your thread from my home in Western Australia, though I lived in South Wales for six years before emigrating here (my Dad's Welsh, from Brynmawr) I wanted you to know that there ARE people plugging for you... literally all over the world.

Reading your story did bring back my and my parent's ordeal when I had appendicitis and was let down horribly by the NHS in the winter before coming here, my Dad's "last straw"! - nobody listening, "it's puberty hitting" and eventually a ruptured appendix, emergency surgery and peritonitis and months of recovery... my experience of it as a 12 year old was one thing, but now as a mother and grandmother, after reading your thread and letter I could almost feel what my mother's experience of it would have been... horrific!

I sincerely hope that you and your Jasmine get a resolution in the spring, and hope that you get comfort knowing that your Bonesmart friends from around the world are supporting you in your quest
 
Such kind words from complete strangers on this forum have meant the world to me. It's was out of sheer desperation that I joined this site seeking advice.
I made a monumental parental fail when I didn't believe jasmine in the early stages of her sufe, luckily my daughters kind heart forgave me quickly. There is always a silver lining to problems. Ours has bought us closer together as mother and daughter. Over the past two years she has gone through hell, if I could've swapped places with her, I would have in a heart beat. Jasmine has a loving younger brother (which most of the time she's mean to) and brilliant father. As a family we are all close and like to joke about and laugh together. Slowly but surely jasmines hip problems have chipped away her laughter and happiness. Ive had to watch her become depressed, despondent, with little hope for a normal teenage life. She handles her pain far better than I ever could've and has been an inspiration to me and everyone around her. She dreams of traveling the world and working in the media industry. I have no doubt my beautiful, strong willed daughter will make sure her life is lived well.
My best parental achievement has been to bring up such lovely, kind, broad minded inspirational children who are my world!
This site has been a great comfort to me, knowing there are people out there who understand what we are going through. I can't thank everyone enough for their kind worlds. I read out to jasmine what's written on here and it makes her smile.

Jasmine has been put at the top of Mr wilsons list. As soon as funding is in place she will be having a new hip in January 2015. Best Christmas present ever !
 
That is wonderful news - fantastic!
 
You must log in or register to reply here.
Corganics CBD
Active Antimicrobial Hydrogel

Staff online

Members online

Total: 1,000 (members: 1, guests: 999)

Latest posts

Back
Top Bottom