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What can we do? - Carers UK Forum

What can we do?

Share information, support and advice on all aspects of caring.
Hi There,
Im new to the forums and not sure if im posting this in the right place Image

My name is Erin,Im 23 years old and have a sister who is 28 years old who has sever learning dissabilities called Joanne.I work in a treatments and assement unit for adults with learning dissablities and challenging behaviour which I love.

The reason for joining is we are having a bit of a problem with an issue with Joanne and her doctor.Jo has and always has had big breast,shes not a large framed lady at all and slouches forward because of the weight of her breasts,they will certainly cause her problems with her back in a few years.
Anyway my mother has been to the doctors with Joanne on several occassins over the last few years to see about have a breast reduction but has got no where.The first doctors attidude was she cant speak for herself so the operation is out of the question Image I cant really post what my mothers reply was on here.My mother has been to a number of different doctors over the years but has been fobbed off with many different excuses,the main one being that its the medication Joanne is on that is causingthe rapid breast growth so having the operation wouldnt work because they would just grow back.
After many arguements with many dofferent doctors they finally changed Joannes medication and growth as finally stopped,so my mother asked again about having them reduced but they are still saying no.We are in the process of contacting the local learning dissabilaty nurse to see what they say and what we can do.
Joanne can not go on like this she is looking more slouched forward everytime I see her and we are worried that she may end up in wheel chair when she gets older.
Do any of you know of anything else we can do as if nothing comes from speaking to the nurse we have noidea where we go from here.
Thanksin advance.
Erin Image
Hi Erin

Welcome to the forum.

It's a difficult situation for your Mum as she is thinking of your sisters health and wellbeing and doesn't want your sister having any extra problems that could be avoided.

I don't know where you would go for help, hopefully others will be able to advice you and maybe Jo's nurse will fight your corner and be able to help. Please keep us updated!

Take care
Maryann x
Hi Erin, and welcome!

I don't know if you've tried this but I'd ask for a referral to a specialist to look at your sister's spinal condition to find out what is the cause and how it can be treated.

This way you've attacked the problem and can rule out other causes: I'd guess there's an element of "professionals know best" and they are unwilling to consider excessive frontal load causing the problem, especially when they may be responsible for it. But it's important in any case to rule out osteoporosis, which can be a cause of this type of problem. And it's important to get a specialist on your side who understands the medical condition you are trying to help.

If you've already tried this, I would think about asking for a meeting with the various doctors to discuss the problem and ask them what else they would suggest to correct the spinal problem. Just a quick question - is she having difficulty breathing or showing signs of pain?
If yes I would point out that to leave things as they are could be seen as discrimination against a learning disabled woman who is in increasing discomfort. I might also speculate about the media reaction given the recent MENCAP report on medical services for people with learning disabilities.
thanks both for you replies Image
Charles i dont think my mom has asked about being refered but i will certainly mention it too her,it seems like it may be our best option at the moment.
Jo hasnt mentioned about being in any pain and she doesnt seem to be in any at the moment.She never really complains if she is ny pain or not,its up to us to watch her and see if she is an any type of pain or she would just suffer it in silence bless her Image .
I will pass all this onto my mom and let you know how we get on.
Thanks again for you fast replies.Im so glad i found this forum,its a nice friendly place Image
Hi Erin - I know someone who has had this op and it is a BIG operation (I think she was about 4 hours under anaesthetic) and takes several weeks to get over. The lady I know had about 2lbs (what's that in metric?? Image ) taken off each breast & they also had to cut off her nipples and stitch them back on to make sure they are in the right place. Do you think your sister would cope with all this? I'm not saying she shouldn't have it - because obviously you all know her better then we do - just trying to give you another perspective. The lady I'm talking about had her op because she is tiny (not even 5 ft) and her boobs were so big she looked like she was going to keel over and she had terrible backache too.