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Funding appeal fuel needed

gingernutter

New Member
The story so far....... my BMI is 51.5 with high blood pressure, high cholesterol, knee and hip arthritis, mobility problems, depression and the usual problems that every obese person suffers.

My GP asked for funding in October 08, so far my appeal has been refused by the east of England region panel.

Then refused by the Luton PCT,both on the grounds that I do not fit their criteria. They fund 40 + with diabetes or sleep apnea (nothing else)

Now for my first appeal, has anyone got any suggestion or a copy of a letter that they wrote to their PCT.

I am very down at the moment but being proactive will help me get to my goal.

thank you all so much.
 
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sarah cant read and run have you been tested for sleep apnea? i cant remember what you said about it but i know it was lindas (charliegirl) saving grace.
thinking of you as you so deserve a yes
carole
 
Thanks Carol, I have had a test for it and I do not have it. Here is a reminder of my case.
 
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This bloody post code lottery is criminal. I cant think of anything else you can add to yr appeal other than maybe ask the question why if the nice guidelines say if someone has a BMI of 50+ surgery should be the first line of attack.
hopefully someone will be along with some more surgestions
carole
 
I did a PCT appeal for my bypass..

First I would apply for all paper and computer medical records held with your GP and any Hospital you may have been hospitalised in.
This may cost you money but the max they can charge is £50 so I would apply for everything to make sure.

Then apply for all the paperwork put forward by who ever applied for funding and the PCT written decision PLUS a full copy of there funding criteria. Again the Max they can charge is £50 make you state you are applying under the Freedom of Information act and Data Protection Act..

Make note PCT's fund on a MEDICAL need! so when you go into your emotions come from the angle of the mental health! they dont really care less about your emotions they purely work on medical need you need to make a medical case.

Hopefully all your diagnoses will be in your medical notes, let them know if your on DLA disabled by your conditions. How the surgery can benefit and improve your health..

Also if your weight has been recorded over the life span of your medical grounds make a chart of your gaine's and losses show them hows its increased over the years..

Make a argument for prevention rather than cure! how if you gain more weight especially already being super morbidly obese and how dangerous surgery is the higher your weight..

Put together a FULL blow by blow detailed portfolio make copies of any medical condition and treatment from your medical notes. Print information about the benefits of surgery and the dangers of the conditions they are requireing you to have to qualify... go over there own criteria with a fine tooth comb and see if you can find any loop holes. My PCT said they didn't fund revisionary when I asked for a copy of there written policy they didn't even have one! so in theory they didn't even have a policy it was just something they said!

Put all this together.. make this like you are putting together a medical case or legal argument, look up the NICE guidelines for WLS print them. Talk about your human rights!!

Don't just write a letter telling them how sad you are you need to really put a good strong medical argument forward. it's literally gonna be a full time job..

I wont my appeal if you need any more help or info please feel free to ask..
 
Hi Sarah, I really don't know what to say apart from that my heart goes out to you. Its not a life as such that you have got, just a mere existance and if anyone deserves this then you do sweetheart. Don't give up love because this battle will be won its just going to take a little extra time. Keep up the fight we are all behind you.xxxxGaynorxxxxx
 
Very supportive post Alexa.

Hope this helps you in some way Sarah x
 
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Thanks Carol, I have had a test for it and I do not have it. Here is a reminder of my case.

Summery of problems that are related to my obesity.

Family history. Sadly my brother recently passed away from a massive heart attack aged 49, he was obese. My father died from a diabetes related illness and heart problems, he was obese. My grandmother is 89, she has diabetes and she is not obese. My mother is 70; she has heart and lung disease. I try to help my mother care for my elderly grandmother in what ever way I can. These days I am not much help
My weight lost history After giving up smoking 18 years ago the worse of my weight problems started affecting my health. I have attended the doctor for many years concerning my weight problems. I have tried Xneical, Reducil, Acomplia. I have attended the counter weight programme with my GP nurse. I have tried diet and exercise. I have attended the Luton & Dunstable obesity clinic where I attended the obesity nurse. I have also tried the LCL diet with the hospital. I have been yo yo dieting for as long as I can remember, years of slimming clubs, I have been a member of them all repeatedly. I have even tried hypnotism.
Physical effects. High blood pressure, painful arthritis in my knee and hip joints which my knee is almost bone on bone at this time, shoulder pain, hip pains, ankle pain, feet pain, I have tendentious I suffer excruciating feet and leg pain with this at the end of my working day I am in tears. I have carpel tunnel syndrome, poor posture, can not stand or walk for too long, I suffer back aches. I feel constantly fatigue. Haemorrhoids. Short of breathe. Persistent heart burn. Bladder incontinence.
Emotional effects. Low self-esteem, anxiety, I feel lonely, no confidence, no ambition, no will power. I feel with drawn from life, depressed about my weight problems, no interest in anyone or anything. I don’t leave the house; I suffer anxiety at the idea of having to go out. I panic if in a crowd. Can not see any hope for myself. Irritable, mood swings and restless. No patience. I have distanced myself from family and friends more and more as my weight has increased.
Personal Hygiene care. My most concerning problem is with my most intermit toilet care. I have to have a shower after using the toilet. I can not reach that personal area for my toilet cleaning care. I can not use the bath anymore as I can not get out of the bath. I can not cut my own toe nails or address other foot care. My toe nails become so long that they dig into my other toes and they bleed. I have chaffing around my thighs and around the top of my arms, this can become inflames and weepy. I have skin sores around my skin folds at my shoulders also under my bra and my tummy area, all of which sometimes rubs raw and can become infected.
Sleeping My snoring also wakes me up. I can not turn in the bed without some kind of aid. I wake up during the night on and off and most of the night. I have to wake in the night in order to roll myself over. I wake feeling exhausted, I feel tired during the day. I struggle to get out of bed. I have to use a pulley to get out of bed. When I lay down my breathing is strained as lungs are under pressure. When I lay down my chest tightens. If my head falls forward while sleeping my breathing is obstructed which put me in a state of panic as I feel like I can not breathe. Automatic responses save me.
Work effects due to my weight I have had too reduced my hours of work. I have had too reduced my work load, I also delegated some my own work duties onto others. I can not keep this up for much longer as the patience of my work colleagues is wearing very thin; they have been more than kind to me. My work is the only contact that I have with other people. When I finish work I go straight home and I go straight to bed as I am so exhausted from my days work.
Things I can not do. I can notfit in a plane seat or fit in a theatre seat or fit in a cinema seat. Can not bend down to pick things up; I can not drive for long. I can not sit for long. I can not walk too far. I do not do shopping, I have it delivered. I do not do much house work. I have become very lethargic. Everyday life is an exhausting for me.
Socially I do not do anything socially. I just stay at home. I do not even go to special family events.
My goal My goal is to be fit and healthy again, to walk, to swim, to go on holiday, to be a wife again, to be a mother again, to be a daughter again, to be a granddaughter again, to be a sister again and to be a friend again. It would even be nice to do the house work again.

:hug99:I find it unbelievable that they have turned you down for surgery knowing all of this.

Have you also tried getting the MP on the case again?
 
hi hun i got another email from my friend and she said ..

................................

i told her wat luton pct require and she said that .....

so there is hope hun xxx

thats wot the critirea is for my pct.
If i can get it huni she can, she has just got to b prepared for a fight!
I dont have diabetes, heart problems, blood pressure fine etc. U just have to keep on at them so they know ur serious and they wont forget u.
It would help if ur friends gp can support her. Xxx
 
I just want to say how desperatly sorry for you I feel. I know thats know help but at least you know others are thinking of you.

Surely your GP/MP can bring some pressure to bear over this most particularly in view of the tragic early death of your brother.

I wish you all the best for the future. I really hope that someone sees sense and gives you the help that you need so badly.

With love and hugs
 
Hi Sarah I really dont know what to say, I have emailed you regarding this and I am totally at a loss as what to advice you. If you need help with writing your letter let me know and I will work on it for you...give yourself time to get your meds into you so you have a clear mind when you start and then you will be able to kick ass in the right way....xx
 
Thank you all. This really helps.

I agree with you that I have a good case.

I will keep on at it. I have to. As you can see I do not have much of a life.

Thank you for all the support I would be lost without it. I feel stronger know you kind people understand.

Sorry to moan on about funding, I know people find it boring...... I do!
 
Hi Sarah really sorry to hear your news. It's so frustrating but please keep positive.xx Cleggy on here appealed in the Lancs area and he won his appeal - I'll give him a shout and ask him to share his tactics. xx
 
Gingernutter - I had not noticed your post initially, Grom dropped me a note and I am putting some info together. I failed at the first hurdle - I was over 22 Stone without any other conditions. My local PCT rejected based on the NICE guidlines. I started off by requesting a copy of the guidelines and never received anything. From there I started my own internet research and used this to form the basis of my appeal based on the grounds of [dare I say it] '' Postcode Lottery''. My doctor urged me not to take this line but I decided to give it my best shot. I can't seem to find my letter but I have found a number of the documents that I sent to substantiate my appeal. I do need to advise that part of my argument was that I was willing to pay towards the Op, I advised them that I couldn't afford to fund the operation entirely but was willing to contribute if it would be considered. I was very lucky in having the decision overturned and whilst I wasn't advised about the decision I received a refferal letter and it moved on at a pace from there. I will get the info together and attempt to mail it to you via PM [unchartered territory but I will give it a shot lol!] Best of luck and hope the info will help. Cleggy.
 
Hi Cleggy,

Thank you for your help. I need every bit of help I can get. I am feeling much stronger this week but this search for funding is draining me.

gingernutter
 
Hi everyone,

I went to the doc and she wants me to try an anti-depressent. This whole thing has really taken its toll on me. I have the prescription and I am thinking it over.

I have such a poor standard of life because of my obesity. Why oh why should it be a postcode lottery!

The GP is very good she said she will back up my appeal application. I thought she did it for me but apparently not. I am gathering infomation in order to write my appeal.

Everyone says I should get this funding. I agree. I will have to try and grow stronger. With the help of you guys I know I will win in the end. At the moment I am feeling a little battle weary. I need you all more than ever to help me back on my feet.

Thank you all for your kind words and support.
 
Hi Sarah, we are ALL here for you. I myself am usually lurking around on here till the early hours if you need to talk. get the prescription and take the pills because they may help you cope with this bullsh*t that your going through. You just have to believe that you ARE going to win this battle. Take care xxGaynorxx
 
PCT Funding

Sarah

What you are going through is appalling - dont give up the fight. If anything it should spur you on. You have paid your taxes and NI contributions for ever - they shouldn't deny you this. Dont let it drag you down - take the anti depressants and stay strong. If worst comes to worst - can you find an address in an area which is funding and register with a GP there - its a real last resort but it might be the way forward if your appeal doesnt work and Im sure it will. Good luck and stay strong.
 
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