Feeling so low about differing information

[milliemollymandi1234]

Does anyone else get frustrated with the different things we are told?

I have had group session, funding in place and counselling. I was told that I needed to have a sleep apnea test (even though I have already ha had have spinal surgery this year and long op) as this was standard but not to worry it wouldn't delay my being put on the list for surgery.

I haven't heard anything after my test so called. I was told that the specialist still needs to review my results after which he would determine if I needed more treatment and would then be put on list. !!! I said that I was told be the specialist that I was already on list and now told no that's not the case.

It's so frustrating as it takes so long to get here. I know that I am lucky to get this far but I feel like my life is on hold. I am keeping back holidays at work to cover surgery time. I am being pressured by family to give dates as everyone is trying to save dates to cover child care.

I keep getting told different things. I know that hospitals are amazing but this feels like I am being messed around.


Sorry I am just needing to rant

 

[SUNSHINE]

Awww Milliemollymandi. Sorry that this is all happening to you. Hopefully you get a date soon. You are allowed to rant as much as you like (((hugs)))

 

[FeeBee]

I'm not surprised you're fed up and I remember feeling my life was on hold, putting off decisions at work and hanging on to holiday and its just rubbish. Hopefully someone more knowledgeable will pop along and be able to suggest who to contact to get some answers x

 

[milliemollymandi1234]

Thank you for the support it's nice to know someone understands .

I have just got hold of one of the specialist secretaries and they have just said I have been taken off the waiting list!!!! She can't see any reason for this and can't see why it has happened.

I just don't know what to do. She says she is going to get hold of the specialist but that his secretary is off ill and he's had holidays.

I just feel heart broken. I am going to complain tomorrow I someone doesn't get to bottom of this.

 

[Tracey]

Make sure you keep on at them
I waited 2yrs thinking I was on the list and not knowing the procedure just thought that's how long it took .....
In the end I rang them...
I had got lost in the system!! And wasn't on the list ...they said they'd look into it and then 2 wks later they rang and I was in hospital 3 wks later xxx

 

[milliemollymandi1234]

Thank you for the tips I will keep on at them. Just a bit upset that you have to be pester them as I feel bad.

 

[Mazza]

Don't worry or feel bad about pestering them, if you hadn't you wouldn't have found out you'd been taken off the list!

These things do happen and its a positive thing that you're following things up, it will ensure that they remember you and hopefully get you back on the list.

Good luck with chasing them, I hope you get a date soon xx

 

[milliemollymandi1234]

Well I got hold of the bariatric nurse. She was great!!

I explained what went off. She said no reason for me being taken off list. I have ticked all the boxes, jumped all the hoops and I am ready for surgery.

She spoke to the list manager and I am back on! The list manager is apparently going to give me a call to discuss the possible dates.

She was so understanding and said that this is a life changing op I'm waiting so it's understandable to be upset if being messed around

From lots of tears yesterday to bit of joy today. Thanks for being so understanding everyone.

 

[Tracey]

Good luck let's hope it's not long now xxx

 

[SUNSHINE]

That's good news. Good luck

 

[Hannah2]

Yeah! Hope you don't have to wait too long now!

 

[FeeBee]

I'm so pleased for you

 

[Sweetcheeks84]

Thank you for the support it's nice to know someone understands .

I have just got hold of one of the specialist secretaries and they have just said I have been taken off the waiting list!!!! She can't see any reason for this and can't see why it has happened.

I just don't know what to do. She says she is going to get hold of the specialist but that his secretary is off ill and he's had holidays.

I just feel heart broken. I am going to complain tomorrow I someone doesn't get to bottom of this.

I know how you feel I went to all appointments an dfone what was asked then got through all the hurdles then had to wait longer due to my condition I had to see yet another guy to be OK for surgery. When Isaw him 3 months later he said he didn't see why I needed to see him and okayed me again then said I will see the MDT team next in 3 months well that was in may in Aug I still had no appointment for the MDT team so I called and the had lost me in the system and said I should ahbe seen them by now. So I got put on the list to see them and still not seeing them till 30th December 2016. The frustration is beyond awful. I called and asked about who I will be seeing as I got told the surgeon and dietitian and anesthetist will be there to get a letter saying it was the nurse an dietitian and psychologist so called them for the woman to have an attitude questioning me saying I mite not have funding or mite not even be on a list n have I done all that was asked I replied to all of this and she just said well you will have to wait to find out.
Saying such things to someone who has waited 15month has my life on hold waiting planning or lack of planning nearly pushed me to break s I'm no longer working due to my health. I comepleatly understand what your going through I really wish you all the best xxx

 

[Julia56]

That's awful Sweetcheeks, I hope you got somewhere last week. Hopefully the team will be much more supportive than the woman on the phone (my team are fantastic, particularly the bariatric nurse).

 

[Sweetcheeks84]

That's awful Sweetcheeks, I hope you got somewhere last week. Hopefully the team will be much more supportive than the woman on the phone (my team are fantastic, particularly the bariatric nurse).

It was awful I went an because I gained over Xmas they won't refer me to the surgeon till iv lost another 5% to prove I am committed, they wanted me to do the milk diet but as I have conditions my body can't take the milk diet so I have to do the low cal diet. Until I lose the other 5% they won't refer me iv been waiting 16 months so its a huge blow not to be referred my life's totally on hold. Its not been a good week sadly xx

 

[Julia56]

That's horrid. I suppose they do need to be sure you are capable of the changes after surgery but inability to lose and keep it off is why we are considering surgery! Fortunately my team only ask that you don't put weight on from your starting weight. We have to have three meals a day with no snacking and no drinks with meals and prove it for the dietician with a food diary. So sorry your team seem to want to put extra hoops in your way.

 

[Sweetcheeks84]

That's horrid. I suppose they do need to be sure you are capable of the changes after surgery but inability to lose and keep it off is why we are considering surgery! Fortunately my team only ask that you don't put weight on from your starting weight. We have to have three meals a day with no snacking and no drinks with meals and prove it for the dietician with a food diary. So sorry your team seem to want to put extra hoops in your way.

Thank you, it is really frustrating coz I done everything they asked but coz I gained over Xmas its like they are punishing me. It feels like they are starting me all over again. I will go mad waiting another 16 months. I jusdt want to be healthy again.
Can I ask what hospital are you with? Xx

 

[Julia56]

Castle Hill, hull

 

[Moonagedaydreamer]

This happened to me too and it's really frustrating. I made an official complaint in writing and explained how this had impacted my work and ability to plan my life etc and how my employers were getting frustrated as I was in a position where they would need to hire someone in to cover me and I kept having to give them different time scales.

I followed this up with weekly phone calls just to make sure it wasn't forgotten and I think this helped things stay on track although they must have hated me in that office (I was always polite but firm).

Wish you the best and hope things get back on track for you.

 

[Sweetcheeks84]

This happened to me too and it's really frustrating. I made an official complaint in writing and explained how this had impacted my work and ability to plan my life etc and how my employers were getting frustrated as I was in a position where they would need to hire someone in to cover me and I kept having to give them different time scales.

I followed this up with weekly phone calls just to make sure it wasn't forgotten and I think this helped things stay on track although they must have hated me in that office (I was always polite but firm).

Wish you the best and hope things get back on track for you.

I decided to do the same thing, after my appointment with the mdt the nurse told me they won't refer me till lost a stone coz I gained over Xmas. She said she will see me in 4 weeks then I received an appointment for the 27th march to see her!! This was on the 30th DEC. So I called this monday and spoke to someone and told her all that's going on and how its effecting my life she said she will look into it. Then on Wednesday I spoke to my nurse again (i called to bug them) and she was shocked to tell me I now have an appointment on the 1st Feb and then Thursday I got a letter to see the surgeon on the 16th march which I'm so excited about coz my nurse said to me she will only refer me If iv lost the stone but not till the 1st Feb when she sees me and then it will be 3 months wait to see him but who ever I spoke to on Monday clearly spoke to them as I have early appointment for both so clearly sitting back isn't the way to go we need to chase them up to move forward.
They don't seem to understand how the waiting effects your life you can't plan holidays or trips or know when you can see ppl or even when I'll get to go back to work coz I'm awaiting this op so then I'll be fit to go back as I lost my Job Due to I'll health.so much rides on this op and your life waits In The balance xx