Whats shocked me is that they have zero grounds to refuse funding...
Eugh.
I'm too numb to think right now.
I'm going to the shop.
Thank you all so much for the support, I hate to admit it, but I really need it right now.
I know baby, they really don't have any grounds on denying you IP treatment, But it's okay, we'll appeal & we'll re apply, I'm just, I'm so sorry this has happened... I really am shocked.
You're welcome to all of the support in the world & more angel, please keep posting, we're here for you...
I am really shocked they refused funding. Get appealing and get MP's and everyone involved. It is absurd.
Don't give up the fight hun. Never give up.
I want to kiss the bottom of the ocean before I burst through its surface into the sunlight, otherwise I will always be wondering about what was left unseen at the bottom
i'm tired of chasing my dreams. i'm just gonna ask where they're going, and hook up with them later.
oh helen im so sorry they refused funding! thats awful, i really hope you manage to appeal and get funding but maybe while you are waiting for that you could try your hardest to fight this illness with the support of sarah and your friends both online and i rl! you can beat this, please dont give up!
xxx
For some reason I had a bad feeling that this would happen - it's so unfair that you are refused. I've seen people on other sites who have been in IP so many times and don't use it to their advantage just in general
This news actually makes me want to cry, I cannot even begin to comprehend how you must be feeling DON'T give up hope! Everyone is appealing for you, and it's so bloody ****ing obvious that you need this, you deserve this
After all this ****ing suffering you go through every day
WITH ALL THE MEDICAL ISSUES YOU HAVE
YOU NEED IT!!!
This makes me so angry and upset
Helen sweetie i keep reading the parts of your thread from today over and over again.
i keep reading it over and over, i am struggling to let it all sink in.
That this has happened.
i CANNOT believe it.
i just dont get it, dont understand it.
So i cant imagine how you must be feeling or those closer to you than me like your family and of course Sarah.i cant imagine how you or any of them must be feeling.My heart goes out to you and all those around you.
i KNOW how much you need this but this is not the end sweetie.
This is the very beginning - what has happened today must be earth shattering for you and it is totally wrong but this journey was never gonna be easy.So many of us want to fight for you.Please fight with us too.
Let us fight for you and you fight too.Show the funders how much you want this, how much you want to live.
So many people want to support you and i agree with all everyone else has said too.And you are an absolutely amazing person and i just wish you could see that too.
Also it doesnt have to be like this forever.And you dont have to die.
Helen i know that you are in so much pain, that you suffer so so much and even much beyond what words could probably ever convey.
But you have such a great thing with Sarah - you two have something very special, something many of us could only ever dream of.And i know you are SO important to her.Please fight.
im not trying to make you feel guilt etc if you were feeling like giving up but i want to show you things can change.
Last year this time you didnt have what you now do with Sarah.Thats really special - and you will face obstacles in life like not getting the funding right now but perhaps in time other parts of your life can change for the better too.Just like Sarah coming into your life.i know it seems nothing can take away the pain you are in right now at the moment but please dont take away from yourself the chance of other things improving too.
Hold on to what precious you do have, please try and fight with us so that you can get more good and positive things in your life too and so that you can get better and get the support and help you deserve.
You know this journey wont be easy Hel but i believe you also still know you can get there.i believe you can.
Also i want to say a couple of other things to you.
I am not a professional but i am surprised they think seeing a dietician more often could make much difference to your situation.Perhaps your CPN could try and explain this to them if she thinks it couldnt make much difference either?
Secondly i want to make clear that i think that what they have done today is absolutely and totally wrong and disgusting.
i dont beat around the bush.That is my opinion.
But i also want to say to you something that i noticed.
Hel i know this is little compensation to you right now very very understandably but i also want you to try and hear that they have not said that you are not ill enough for IP.What they have said is different from that.What they said is not helpful and given your current medical situation i also feel totally unacceptable but i dont want you to think that they are saying that you are not ill enough for IP cos i am not them but i dont think that is perhaps what they are saying.
i think they are fussing about on technicalities which is awful considering how much you need serious help and how at risk you are emotionally and very very much physically and its abysmal.They are messing about a bit.Trying not to spend money.
i would also suggest that perhaps you or your CPN ask the funders to specify in writing what the other options in Wales are that they feel you have not explored?
Because this forces them to be more specific and perhaps you and your CPN etc and all the specialists can then try and make them see if those options are actually suitable for you.
If i were you and your CPN/team thats what i would do apart from appealling/writing to your MP/getting as many people to write to the funders as possible which you obviously need to do now.
i would simply call their bluff.And ask them what the other options are in Wales and what specifically they are thinking of?Then you can respond more accurately to them and also if they do mention anything especially anything IP in Wales which may be of interest perhaps you can investigate this too [though i would be extremely suprised if they were to suggest a suitable IP unit in Wales cos as you say you have been through all the specialists and they would know!]
Also just to keep them quiet you may have to do things like be willing to see the dietician more frequently for a while if they require you to before they consider other things further.If i were you i would go along with this if i had to perhaps for a little bit.Because i think they will work out pretty soon just how severe things are for you and that this just wont do.
At this stage i dont think you should have to prove things like this.Its disgusting.
But please please try and fight with us and dont give up.
So concerned for you.
i love you.
How are you now?
xx xx
Last edited by Sleepless123 : 21-06-2010 at 07:11 PM.
Reason: To add a bit
i do not always manage to be around but i wish you all the very best - love and luck to you all!
Hey helen. Im really sorry to hear about them refusing. But although its hard do not give up hope.
From what youve said it seems their decision was based more on financial reasons rather than your medical need. Which is compleatly out of order. The horrible thing is its happening to a lot of people who need the services at the moment, i know of a girl whos had her inpatient funding stopped by the commisioners - half way through her treatment!
Writing to your MP sounds a good plan, also im sure the proffesionals involved in you will not let this stet back stop them from finding you the care they feel you need.
In the meantime i want to second what sleepless suggested.
Quote:
Originally Posted by Sleepless123
Also just to keep them quiet you may have to do things like be willing to see the dietician more frequently for a while if they require you to before they consider other things further.If i were you i would go along with this if i had to perhaps for a little bit.Because i think they will work out pretty soon just how severe things are for you and that this just wont do.
As if you have 'exhausted options' they cant justify refusing funding again.
Just wanted to say im sorry and dont give up - you have a lot of people fighting for you.
take care x
After all this has passed, i still will remain
After i've cried my last, there'll be beauty from pain
I cannot believe this.
I really really can't believe they've refused it.
It's disgusting.
I don't know you, Helen, but my thoughts are with you and I send you hugs and support :(
Life is about love, last minutes and lost evenings,
About fire in our bellies and furtive little feelings,
And the aching amplitudes that set our needles all a-flickering,
And help us with remembering that the only thing that's left to do is live.
Being fat or thin is nothing to do with needing IP baby girl. I promise you're not fat either way though.
I'm gonna keep writing this letter & send it to you to print off & send it to them with the other letters, okay baby girl? This appeal is going to happen & I'll do everything & more to get you IP & the treatment you need, deserve & want.
Please don't give up though, please. Keep fighting & living, for me?
Oh Helen, I've just read through this and my heart is aching for you. I know I don't know you but from reading this is it so obvious that you need help. I can hear that part of you is screaming louder than the ED that you to live and you want life and just to be given the chance.
You have so many people who care about you on here, you are obviously a lovely person for so many people to care so obviously about you.
I know it hurts and you feel let down and your eating disorder is screaming and laughing at you right now but please know that you were not refused funding because you are not ill enough. It is unfortunately simply about money. Pure and simple. They still feel they can save money somehow, despite how ill you obviously are (and as you said, all the ED specialists said you should be treated).
I know you dont feel like you have any fight left in you right now but appealing, writing to your MP etc will work. Let them see you wont just roll over and go away to save them some money. Kick up a fuss, even go to the press if you have to. It shouldnt have to be like this but if you show them you want to lve, and that you will embrace this chance, they will be forced to listen. Its a horrible state of affairs that people have to fight like this but unfortuantely I have heard case after case of this in terms of trying to get funding, not just for mental health. (If it helps at all, in the 2 cases I know of personally, both got funding through the appeal).
Sarah I just want to say that your support is inspiring.
Life is about love, last minutes and lost evenings,
About fire in our bellies and furtive little feelings,
And the aching amplitudes that set our needles all a-flickering,
And help us with remembering that the only thing that's left to do is live.
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