WL Surgery 100% on my own

[Hannah2]

Wow! Sorry you have been treated like that! I would definitely think about making a complaint - I wonder how many others are spoken to like that and have it affect them so they get more distressed!?

Awful things to say/ do.

So happy that the team have supported you though, hopefully you will find out what is next soon and have some more solid things to focus on/aim for.

Lots of people keep the WLS quiet. You may reach a point where you are ready to tell people but not everyone does.

 

[TiaLi]

Professor Patel really cares about his patients, you are in good hands there. His waiting list is quite long, but he is worth the wait.

 

[SAM55]

Good someone is taking you seriously as an individual and you are getting some emotional support from Kings. Hopefully things will start moving for you now. It can seem a long time for the NHS process to kick in, especially when you have struggled for so long, but the system is in a mess. Hopefully you will get your appointment through soon and you can focus on the future. The wait will be worth it in the end.

 

[Quinn]

(Note* I am saying this to no one in particular, I just need to put these feelings somewhere in hopes I will feel better about myself .)
Today the weigh loss team (tier 3) has rung to set up an appointment for me. So all these months waiting to get on to this next tier has finally happened? NOPE! They have an appointment later this month but its at a place with ZERO wheelchair accessibility. The conversation went like this:
Them: "I just checked and there is no step free access at all there, are you sure you can't manage a few steps? What did you do before the weight gain?"
Me: "I've been a wheelchair most of my life due to a neurological disorder. I'm not in this chair because of my weight."
Them: "Are you sure?"
Me: "What? Yes I am sure. No doubt my weight doesn't help things, but it is NOT the reason I am in this wheelchair."
Them: "You'll have to contact your bariatric nurse to see if they can send you somewhere else, we just don't have the facilities."

I get harassed constantly, even by strangers, as people automatically assume I'm in this chair BECAUSE of the weight. I've always just teetered on the edge of overweight, I'm sure the use of a wheelchair full-time hasn't helped but it is not because of my weight that I'm in this chair. It is literally too dangerous for me to walk as I have no feeling in my feet and horrific balance. Of which there is no magic cure.
So now the wait continues. I'm too frightened to go private because my neurologist tells me private hospitals will not offer a long term stable aftercare and he really thinks staying within the NHS where they know me, would be best long term.
So I don't know if the letter I have to see Professor Patel at Kings in October is a step closer or just another appointment.........

 

[FeeBee]

I know exactly where you're coming from. It's not on to talk to you that way at all

 

[TiaLi]

I'm confused - didn't you say you were now going to attend tier 3 at King's instead of that place closer to you since their waiting time was so long? King's is definitely wheelchair accessible?

 

[Hannah2]

Awful!

Think you should make a complaint and get PALS involved!

Re going private, the aftercare depends on the package they offer - mine is for 2 years and exactly the same as if I had stayed with the consultant on the NHS pathway (I had the same consultant but privately when I switched from NHS to private). If you can go that way and want to why don't you ring and ask what aftercare is available?

Why don't you ring Kings to find out more info on your next apt and explain why you are asking?

Sorry you are having such a hard time of it.

 

[SAM55]

Definitely worth a complaint! So sorry you have had this experience but not surprised

Worth a call to PALS about getting some proper info, but also contacting NHS Complaints Advocacy for your area. They will be an independent body who will support you with a complaint free of charge.

 

[Quinn]

I'm confused - didn't you say you were now going to attend tier 3 at King's instead of that place closer to you since their waiting time was so long? King's is definitely wheelchair accessible?

Thing is I'm not sure if the letter I have from Kings is for me to attend tier 3 with them or an entirely new appointment. It doesn't give specifics and no one has replied to my messages asking to verify. So I'm just going to attend every appointment, wherever its located, and hope I'm getting another step closer. I'm really confused by it all, I feel like I'm going on circles. I'm usually really calm about these things but the fact I have someone being really rude and awkward is making things really painfully difficult. I'm already stressed by all this, having speak to me like this woman does isn't helping. I'm not sure if I'm going to make a formal complaint, I worry about doing that too. I have felt better talking with folks here about it though.

 

[Quinn]

Its a taken a long time to sort this Tier 3 appointment! its been a nightmare of people not listening to me. I'm just exhausted with the fact that I am not listened to; they just seem to shut off hearing me and then there is only half the information exchanged. Its irritating!
I had a pointless meeting at Kings where they now said they were expecting to get me on the surgery waiting list but I need a cardio doctor to confirm I'm fit for surgery. Naturally this is the first time I've been told of this and the wait time to see a cardiologist local to me...........4-8 months!!!! So after a good cry for a few days I finally got an appointment for Tier 3 to start and this entire time there was a VERY accessible place down the road from me but the person setting these up "assumed" it was too far "cuz google maps said it was".
So I've finally had the first tier 3 meeting so 5 more months of this before I can be referred back for the waiting list.
So the Cardio thing had enraged me so much that I called my private health insurance and got a referral to see a Cardio doctor, whom I see next week. However, if he wants more than standard fitness testing I have to pay this myself, the private insurance wasn't friendly about even allowing me to see one.
Wait it gets more hellish......I have a large cyst on an ovary that recently showed a problem and I had to see a gynaecologist oncologist urgently! They told me it looks sinister and I needed tests immediately. Loads of cancer tests. It was terrifying! But that's come back ok-ish (No cancer!! so grateful) but the gynae won't do surgery on this yet as he thinks the WLS should happen first, so now I have to see him again 3 months to look at this cyst and if its changed it needs removal immediately. If it needs removal then I can't have WLS for a year? I don't even know which nurse told me that, but this is now how I am dealing with all of this.................I'm not. I'm not dealing with it at all, I'm just going through the motions, I don't think about it as an exciting goal anymore. Whatever happens, happens. I'm drained.

 

[Maria61]

Its a taken a long time to sort this Tier 3 appointment! its been a nightmare of people not listening to me. I'm just exhausted with the fact that I am not listened to; they just seem to shut off hearing me and then there is only half the information exchanged. Its irritating!
I had a pointless meeting at Kings where they now said they were expecting to get me on the surgery waiting list but I need a cardio doctor to confirm I'm fit for surgery. Naturally this is the first time I've been told of this and the wait time to see a cardiologist local to me...........4-8 months!!!! So after a good cry for a few days I finally got an appointment for Tier 3 to start and this entire time there was a VERY accessible place down the road from me but the person setting these up "assumed" it was too far "cuz google maps said it was".
So I've finally had the first tier 3 meeting so 5 more months of this before I can be referred back for the waiting list.
So the Cardio thing had enraged me so much that I called my private health insurance and got a referral to see a Cardio doctor, whom I see next week. However, if he wants more than standard fitness testing I have to pay this myself, the private insurance wasn't friendly about even allowing me to see one.
Wait it gets more hellish......I have a large cyst on an ovary that recently showed a problem and I had to see a gynaecologist oncologist urgently! They told me it looks sinister and I needed tests immediately. Loads of cancer tests. It was terrifying! But that's come back ok-ish (No cancer!! so grateful) but the gynae won't do surgery on this yet as he thinks the WLS should happen first, so now I have to see him again 3 months to look at this cyst and if its changed it needs removal immediately. If it needs removal then I can't have WLS for a year? I don't even know which nurse told me that, but this is now how I am dealing with all of this.................I'm not. I'm not dealing with it at all, I'm just going through the motions, I don't think about it as an exciting goal anymore. Whatever happens, happens. I'm drained.

Hi Quinn I am so very sorry you are having such a hard time, wish I could make things happen quicker for you. I hope the support from everyone on this forum will help you and I know you will do very well when you do get your surgery xxx

 

[SAM55]

Its a taken a long time to sort this Tier 3 appointment! its been a nightmare of people not listening to me. I'm just exhausted with the fact that I am not listened to; they just seem to shut off hearing me and then there is only half the information exchanged. Its irritating!
I had a pointless meeting at Kings where they now said they were expecting to get me on the surgery waiting list but I need a cardio doctor to confirm I'm fit for surgery. Naturally this is the first time I've been told of this and the wait time to see a cardiologist local to me...........4-8 months!!!! So after a good cry for a few days I finally got an appointment for Tier 3 to start and this entire time there was a VERY accessible place down the road from me but the person setting these up "assumed" it was too far "cuz google maps said it was".
So I've finally had the first tier 3 meeting so 5 more months of this before I can be referred back for the waiting list.
So the Cardio thing had enraged me so much that I called my private health insurance and got a referral to see a Cardio doctor, whom I see next week. However, if he wants more than standard fitness testing I have to pay this myself, the private insurance wasn't friendly about even allowing me to see one.
Wait it gets more hellish......I have a large cyst on an ovary that recently showed a problem and I had to see a gynaecologist oncologist urgently! They told me it looks sinister and I needed tests immediately. Loads of cancer tests. It was terrifying! But that's come back ok-ish (No cancer!! so grateful) but the gynae won't do surgery on this yet as he thinks the WLS should happen first, so now I have to see him again 3 months to look at this cyst and if its changed it needs removal immediately. If it needs removal then I can't have WLS for a year? I don't even know which nurse told me that, but this is now how I am dealing with all of this.................I'm not. I'm not dealing with it at all, I'm just going through the motions, I don't think about it as an exciting goal anymore. Whatever happens, happens. I'm drained.

Big hug That is a hell of a lot to be dealing with. The system is broken and cannot cope. I get the not being heard - I get it too, and I think it is people's way of dealing with their feeling helpless in the face of cuts. Be kind to yourself x

 

[Hannah2]

Sorry to hear about your struggles, good that you got the referral privately for cardiology and hopefully they will be able to cover the tests that you need. For the gynae issues whilst it is frustrating that if something has to be done it may delay your WLS the important thing is that your health comes first and if that needs to be dealt with at least it means you will be in the best place/health to then deal with/ have the WLS. Deal with each issue as it happens and try not to panic over the whole big picture.

 

[Quinn]

Update 14 June 2018:
Sorry I've not been logged in for so long, I couldn't find my log in details since I upgraded this computer. What a nightmare its been.
Ok so on 30 May I had a meeting with the some specialist dietician at kings, which just made me feel like this will be a never ending circle. Every time I go in to see someone new there is something "missing" that I need to get done. This time is was a meeting with a psychologist. Fine! That's great, lets do that.
Last time it was "you need to see a cardio doc", which would have taken 8-12 months to get an appointment and I ended up paying £375.00 to see privately (and this was after insurance paid their part). So how long will getting an appointment with the psychologist take? 6-8 months and it can't be done privately. ok......
Wait, this gets worse.......I then on 8 June, I had an appointment with the Surgeon (prof. Patel) only it wasn't with him it was with his surgical assistant, she looked over all the notes from all the doctors I've had to see, the dieticians, the weigh management team I see for that tier 4 thing, all this and she says, "What are you taking for the type 2 diabetes" I say "nothing I'm managing it with this super strict diet"
Apparently because I can diet manage this it is now preventing me from being put on the urgent list! So I'm now on the waiting list which I'm told will be done within 52 weeks!
Between tears I asked what do I do about this sinister ovarian cyst then, because that surgeon won't do that surgery until I've had this surgery and have at least 60lbs off me first. (I'm having tumour marker blood work and monthly scans to watch this ovarian thing. its hell)
So prof Patel actually came in to speak to me. I'm on the urgent list which........get ready for it.......is still up to a year wait.
I may have to go private, which isn't ideal as my work won't be giving me another fulltime work contract for another 6 months. Then Prof Patel tells me going private would not be an ideal choice as the long term follow up isn't at intensive as with the NHS. I don't know. I just feel so pulled around
On a lighter note everyone has been super great over at Kings. They're really kind people, but I wish I could make sense of how this whole thing works, because its not ok to be told I have to follow a super strict diet to keep the diabetes in check and then "punished" for it?
Also, the NHS didn't make me fat, my weigh since I had the last child in 1994, has always been a struggle but not at this level until my thyroid went, the menopause came on early and the MS acted up and put I'm in a wheelchair permanently. I didn't change my eating habits to compensate for any of these things and the result is now needing WL surgery. Not to mention the NHS is in serious crisis, so I don't feel I can really complain to be honest.
But I'm so exhausted by all this. Its a lot of work for two long years now. I so tired and every time I do as I'm told, I get mixed messages.
This kinda does my head in a bit.

 

[Emma1504]

Oh no that’s not helpful. You are really going through it. Fingers crossed for the future.

 

[Maria61]

Update 14 June 2018:
Sorry I've not been logged in for so long, I couldn't find my log in details since I upgraded this computer. What a nightmare its been.
Ok so on 30 May I had a meeting with the some specialist dietician at kings, which just made me feel like this will be a never ending circle. Every time I go in to see someone new there is something "missing" that I need to get done. This time is was a meeting with a psychologist. Fine! That's great, lets do that.
Last time it was "you need to see a cardio doc", which would have taken 8-12 months to get an appointment and I ended up paying £375.00 to see privately (and this was after insurance paid their part). So how long will getting an appointment with the psychologist take? 6-8 months and it can't be done privately. ok......
Wait, this gets worse.......I then on 8 June, I had an appointment with the Surgeon (prof. Patel) only it wasn't with him it was with his surgical assistant, she looked over all the notes from all the doctors I've had to see, the dieticians, the weigh management team I see for that tier 4 thing, all this and she says, "What are you taking for the type 2 diabetes" I say "nothing I'm managing it with this super strict diet"
Apparently because I can diet manage this it is now preventing me from being put on the urgent list! So I'm now on the waiting list which I'm told will be done within 52 weeks!
Between tears I asked what do I do about this sinister ovarian cyst then, because that surgeon won't do that surgery until I've had this surgery and have at least 60lbs off me first. (I'm having tumour marker blood work and monthly scans to watch this ovarian thing. its hell)
So prof Patel actually came in to speak to me. I'm on the urgent list which........get ready for it.......is still up to a year wait.
I may have to go private, which isn't ideal as my work won't be giving me another fulltime work contract for another 6 months. Then Prof Patel tells me going private would not be an ideal choice as the long term follow up isn't at intensive as with the NHS. I don't know. I just feel so pulled around
On a lighter note everyone has been super great over at Kings. They're really kind people, but I wish I could make sense of how this whole thing works, because its not ok to be told I have to follow a super strict diet to keep the diabetes in check and then "punished" for it?
Also, the NHS didn't make me fat, my weigh since I had the last child in 1994, has always been a struggle but not at this level until my thyroid went, the menopause came on early and the MS acted up and put I'm in a wheelchair permanently. I didn't change my eating habits to compensate for any of these things and the result is now needing WL surgery. Not to mention the NHS is in serious crisis, so I don't feel I can really complain to be honest.
But I'm so exhausted by all this. Its a lot of work for two long years now. I so tired and every time I do as I'm told, I get mixed messages.
This kinda does my head in a bit.

So sorry to hear this, unbelievable how long this is taking you. Please hang on in there, it will be so worth it xxxx

 

[Bling Babe]

Update 14 June 2018:
Sorry I've not been logged in for so long, I couldn't find my log in details since I upgraded this computer. What a nightmare its been.
Ok so on 30 May I had a meeting with the some specialist dietician at kings, which just made me feel like this will be a never ending circle. Every time I go in to see someone new there is something "missing" that I need to get done. This time is was a meeting with a psychologist. Fine! That's great, lets do that.
Last time it was "you need to see a cardio doc", which would have taken 8-12 months to get an appointment and I ended up paying £375.00 to see privately (and this was after insurance paid their part). So how long will getting an appointment with the psychologist take? 6-8 months and it can't be done privately. ok......
Wait, this gets worse.......I then on 8 June, I had an appointment with the Surgeon (prof. Patel) only it wasn't with him it was with his surgical assistant, she looked over all the notes from all the doctors I've had to see, the dieticians, the weigh management team I see for that tier 4 thing, all this and she says, "What are you taking for the type 2 diabetes" I say "nothing I'm managing it with this super strict diet"
Apparently because I can diet manage this it is now preventing me from being put on the urgent list! So I'm now on the waiting list which I'm told will be done within 52 weeks!
Between tears I asked what do I do about this sinister ovarian cyst then, because that surgeon won't do that surgery until I've had this surgery and have at least 60lbs off me first. (I'm having tumour marker blood work and monthly scans to watch this ovarian thing. its hell)
So prof Patel actually came in to speak to me. I'm on the urgent list which........get ready for it.......is still up to a year wait.
I may have to go private, which isn't ideal as my work won't be giving me another fulltime work contract for another 6 months. Then Prof Patel tells me going private would not be an ideal choice as the long term follow up isn't at intensive as with the NHS. I don't know. I just feel so pulled around
On a lighter note everyone has been super great over at Kings. They're really kind people, but I wish I could make sense of how this whole thing works, because its not ok to be told I have to follow a super strict diet to keep the diabetes in check and then "punished" for it?
Also, the NHS didn't make me fat, my weigh since I had the last child in 1994, has always been a struggle but not at this level until my thyroid went, the menopause came on early and the MS acted up and put I'm in a wheelchair permanently. I didn't change my eating habits to compensate for any of these things and the result is now needing WL surgery. Not to mention the NHS is in serious crisis, so I don't feel I can really complain to be honest.
But I'm so exhausted by all this. Its a lot of work for two long years now. I so tired and every time I do as I'm told, I get mixed messages.
This kinda does my head in a bit.

Aw Quinn you really are going through it aren’t you, I wish I had answers, I must admit I’m very surprised that your surgeon is happy to do wls before the “sinister” cyst is removed, I understand the risks off surgery when we are overweight but I would have thought they would have wanted that out first. I can only encourage you to try to remain positive and focused on the end goal, waiting is awful but you will get there, we are all here for you and I’m sorry you have no-one you feel you can talk to in person but we are always happy to listen and offer a virtual shoulder.
Take care my love xxx