Frustrated and Disappointed

[Katastrophe]

Hi everyone,

Just wondered if anyone can give me any advice on where to go from here... This is my story so far.. I'm breaking it down so its a little more understandable. I tend to go off on a tangent.

Nov 2008 - Referred to St Barts by GP

Jan 2009 - First appointment at Obesity clinic and with dietician.

May 2009 - 2nd appointment at obesity clinic where i found my notes had been lost and i hadnt been referred for any tests ( like a muppet i hadnt enquired - i didnt realise i was waiting for anything )

June 2009 - Scan to check odema

June 2009 - Endocrine appt as i have underactive thyroid and also had no periods for almost 2 years.

July 2009 - Appt at chest clinic

August 2009 - Home sleep study

Sept 2009 - Results of sleep study show i have severe sleep apnea but told i have to wait 3-4 months for a cpap machine.

Sept 2009 - 3rd appointment at obesity clinic - told i am being reffered to the surgeon at the homerton.

Oct 2009 - CPAP machine is ready for me to collect next week - Good news at last!

Oct 2009 - chased appt with homerton but told to call back the following week ... Told this 3 weeks running.

I finally spoke to someone today who informed me that my referral has been rejected due to missing information from the consultant who referred me

I've spoke to the consultants secretary who was very nice and said she would leave a note for him but that the referral was rejected due to me not meeting the criteria.

The problem is now i'm losing faith , what with them losing my notes and now this .... Its been a year now since i was referred by my gp.

I spoke to a lady at my pct today and she said i would get automatic funding once it was applied for because i meet the criteria and have co-morbidities. She was confused though because she said normally people in my area go to Queens in Romford.

I spoke to someone from Queens, again who was very nice and helpful, she is going to find out from the doctor there whether it would be worth me changing... The only thing is i dont want to still be waiting this time next year ... I'm really confused as to what the best course of action would be.

Any advice/thoughts on this would be greatly appreciated. I'm not really a pushy person and i dont like complaining but it all seems to have taken a lot longer than it needed to Although everyone i've spoken to has been really helpful i feel like i'm going round in circles.

Its a year after GP refferal and i havent even see a surgeon yet.

 

[shelbell]

Sounds like quite a journey! I would go back to the consultants sec at the Homerton and explain that the PCT have confirmed you do meet the criteria, and ask her to recheck your referral. It may be that your GP has made a mistake on the referral form etc, or that they don't know about the sleep apnoea diagnosis yet.

By the sounds of it, you need to start being pushy to get things moving.

 

[zns]

Gosh thats rather bad that they lost your notes and havent given the right info for referal. Have you spoken to PALS? I think I would complain. x

 

[dreamofbeingslim]

It is so frustrating, I know exactly how you feel. I did a year under weight management clinic who refered me for funding last december. I then heard nothing until I chased it and was refused funding in August went to appeal in October and was refused again. Last week I found out I have mild sleep apneoa so my gp is looking into where we go from here. The waiting is a killer.

 

[Katastrophe]

Thanks shellbel thats actually a good idea, i'll give her a call tomorrow.

zns, i know what you mean , i guess because everyones been so nice i didnt feel right complaining.

Dreamofbeingslim..That must be so frustrating... I really hope you get funding now they've found the apnea

 

[dsarah1977]

hi it would be easier for me to go queens but im under homerton there really highly qualified then ............. maybe get your doctor to re refer you to homerton thats wat my doctor did............btw do u live far from queens x

 

[Katastrophe]

Hi Sarah, Dr Coppack who referred me is a consultant at Homerton as well - i'm pretty sure he will re-refer me... eventually.

I'm in Hornchurch , where abouts are you ?

 

[dsarah1977]

hi he will refer u again as my m8 was referred by him im in barking and just got my funding last week,u will soon get there keep me posted xx

 

[Katastrophe]

Hopefully it wont be long before you get your op date Sarah

 

[swizzlestick]

Hi Kat

I grew up in Hornchurch :O

I had a very long journey to Homerton via Barts, over 2 and a half years. Only just had my op 2 weeks ago.

Furst I was under Marshall at Newham, transfered to Patel at Barts, then to Mannur at Homerton (feb 2008) then too Coppack at Homerton then back to Mannur.

I am going to send you a private message so look out for it ok

Xx

 

[Katastrophe]

Argghh i bet you thought you were never going to get there swizzlestick! Congratulations on your surgery though - i've had a nose at your diary and it looks like youre doing really well

I'll look out for the pm thanks

 

[swizzlestick]

Ahh as you are a new member I cant pm you so I sent you an email instead

 

[Katastrophe]

I'm a slow poster lol ... I cant even thank anyone yet.

Thanks for the email, i've replied

 

[swizzlestick]

there is a word association thread in here, go and post on their to raise your level to 50

 

[zns]

You have every right to complain, it doesnt matter that they are being 'nice' they have still messed things up, try and find the number for the PALs service at the hospital for a chat at least xx

 

[Sambucca]

Hi Kat, Just wanted to say I agree with Shel. I think you are going to have to get a bit pushy by the sounds of it. And a complaint to PALS wouldnt do any harm either. x

 

[Katastrophe]

Thanks Sambucca,

I've been speaking to just about everyone the last couple of days but been told a letter has gone back to the hospital today with all the info so should hear something very soon.... If not then i shall definately be onto PALS.

Also got my CPAP machine today...The Physio was surprised i hadnt been given a loan machine considering the severity of my apnoea.... *rolls eyes* Anyway just have to figure out how i'm going to get used to wearing a mask to bed ... If any burglars break into my house i'll scare the living daylights out of them

 

[smilergem]

Hi, I can understand totally where you are coming from. I have been turned down twice for funding, over the last 2 years, am trying again this year, having sleep study done tomorrow night, then not sure how long before I get put forward for funding again. Once funding is agreed (if please please), people down here are still waiting 12 to 18 months before surgery. I hope it goes well for you from now on, take care xxxxx

 

[Katastrophe]

I hope the sleep study goes the way you want it to Jan.

To be honest i think the whole postcode lottery thing is terrible. All PCT's should be following the same guidelines.

 

[phatmomma]

OMG as my 10yr old would say. Forget Mrs nice person...

Get onto pals as well as your surgeons secretary. It's a well known fact a squeeky wheel gets oiled. Now get squeeking, your overdue an oil check xx