What do you do when you come her every day and think well what is here to interest me

[CCPM]

Does that sound arrogant, mardy (as my dear Mum would have said?) or just silly?

I'm about 6 weeks from being 6 years out. I can truly say I have no-one to really turn to about WLS. I try, I tried to once again get long termers interest started on here. BUT really there are at best a dozen folks who post (and very welcome they are) but honestly does anyone out there give a damn abut 6 years down the line? After all we will all be 10 stones or less and have no problems won't we?

Well we won't know that as 99% of you will have left the forum well before you are 1 year out and the rest will mainly come back to say 1, 2, 3 years out and this is me - good or bad. A significant part of me says if you believe that you need shooting really soon. A small part of me applauds your confidence.

6 years out with major medical problems (not WLS related) yes I am less than 10 stones. Without major medical problems I am sure I would be over 17 stones again….top weight 35 stones.


I can honestly say that today I totally despair. I got up, got ready for work, all OK. As the day went by I attended yet another primary care commissioning board and yes once again bariatrics were on the agenda. I don't vote on commissioning decisions just there in a different capacity. Today a researcher presented their facts on 15 cases he had studied in the past 5 years. All had bypass. 96.8% had gained back over 40% of their weight. I weighed in with a range of cutting questions and he retreated considerably from his starting position, especially once I set myself in context. BUT although you could argue I had a win in that situation when he sought me out afterwards and discussed his research, he told me that it can only be based around those patients who are willing to provide long term data. He had to go to 6 surgeons to find 15 patients at over 5 years out who would take part in his research.

If this is where we are at then how on earth can bariatric surgery be validated? I admit I fight on but some days I just think what the heck for? From research networks I hear that papers produced on bariatrics are so slow to attract participants unless in their first year out that researchers often choose not to go there.

No need for comment really just saying.

 

[Yvessa]

But equally how are we to even know with teams discharging us at 2 years? I would happily participate. I do know what you mean. Even in the us, unless people have problems they rarely stay. And some people just live with the problems.

 

[CCPM]

Its a really difficult landscape Yve. Some days, many days I am so sorely tempted to give up. The ops get more available more people have them but still so very, very few stick around afterwards. Do you say in the end well can't beat them join them? Do you get seen as a cracked record, a real idiot? Who knows.

 

[tranquil_butterfly]

Hi CCPM. I always like to read your posts and I sympathise with how you are feeling.

On the issue of research and credible data - how much are the teams who carry out the surgery at fault for not following up patients? Most people on here who have had surgery on the NHS will report that follow up appointments are slow or non existent and they are keen to discharge you from their care as soon as they can. Even when people start to have problems they are slow to follow through - or come back with - well you will just have to live with it - which is appalling.

The issue may lie in the funding. There is no doubt some centres view the surgery as cash cows - they get a one off payment for the surgery and some follow up. The profit line diminishes if they do more so there is no incentive to go beyond that - quite the opposite.

I worry more and more about the long term. With the band the option of removal was always there but with the sleeve - well it is permanent and there is not enough data out there for anyone to say with any certainty what the prognosis may be 10 or 15 years out.

I would be interested in knowing what questions the researcher asked in gathering his data. He might want to try a different approach. The way I interpreted it the 'evidence' seems to suggest patient failure to follow through - if he used his starting point as after care offered then I think the picture that emerges would be wholly different.

Very interesting post.

TBx

 

[Yvessa]

TB I would definitely agree with with. I have had outstanding aftercare from my team, but they have openly said to me that they are not allowed to monitor is due to funding after two years and that I will be discharged to tier three weight management. They do say that I can call them if I need to. How many feel like you do CCPM, too disillusioned to engage with aftercare after 3 years of no contact?

 

[tranquil_butterfly]

It would be interesting to look at aftercare right across the board. I would love to do that piece of research but I am betting there would be resistance from a lot of the teams to participate.

TBx

 

[Yvessa]

I think things are improving but it's a slow thing. The nationwide guidelines and the information released by bomss on bariatric vitamins is a good place to be coming from. And it allows care pathways to be standardised.

 

[ThinnerJemima]

Just to throw a curve ball. No other surgeries need a long term follow up, so once your surgery has been a success why do they need to? I've only needed to keep the contact due to on going issues. I've never really got discharged.

Once the repairs on my plastics are done I will have one follow up then I don't expect to need to see my surgeon again.

 

[Yvessa]

That's not strictly true Jemima, many conditions require regular monitoring for life. However, monitoring is done by GPs with more of a clue and in many cases by the outpatient teams. I don't expect to see my surgeon, but I would expect to need monitoring as an outpatient.

 

[emma-louise]

Does that sound arrogant, mardy (as my dear Mum would have said?) or just silly? I'm about 6 weeks from being 6 years out. I can truly say I have no-one to really turn to about WLS. I try, I tried to once again get long termers interest started on here. BUT really there are at best a dozen folks who post (and very welcome they are) but honestly does anyone out there give a damn abut 6 years down the line? After all we will all be 10 stones or less and have no problems won't we? Well we won't know that as 99% of you will have left the forum well before you are 1 year out and the rest will mainly come back to say 1, 2, 3 years out and this is me - good or bad. A significant part of me says if you believe that you need shooting really soon. A small part of me applauds your confidence. 6 years out with major medical problems (not WLS related) yes I am less than 10 stones. Without major medical problems I am sure I would be over 17 stones again….top weight 35 stones. I can honestly say that today I totally despair. I got up, got ready for work, all OK. As the day went by I attended yet another primary care commissioning board and yes once again bariatrics were on the agenda. I don't vote on commissioning decisions just there in a different capacity. Today a researcher presented their facts on 15 cases he had studied in the past 5 years. All had bypass. 96.8% had gained back over 40% of their weight. I weighed in with a range of cutting questions and he retreated considerably from his starting position, especially once I set myself in context. BUT although you could argue I had a win in that situation when he sought me out afterwards and discussed his research, he told me that it can only be based around those patients who are willing to provide long term data. He had to go to 6 surgeons to find 15 patients at over 5 years out who would take part in his research. If this is where we are at then how on earth can bariatric surgery be validated? I admit I fight on but some days I just think what the heck for? From research networks I hear that papers produced on bariatrics are so slow to attract participants unless in their first year out that researchers often choose not to go there. No need for comment really just saying.

Didn't I say a similar thing a few weeks back ccpm....I'm sick of hearing myself go on about long term input and lack of support.
It's a lost cause..the only time people are supportive are in the first two years.
After that you may as well be on your own...sad but true.

 

[emma-louise]

I've been reading all these posts and a comment yvessa made the other day just about sums up baratrics....
"It's like sticking a plaster on an open wound"

 

[ThinnerJemima]

I hope one day to be able to disappear from my team.

After my first WLS, had the surgery, retrained on changing my lifestyle for life then I expect to move on. Just bloods every year.

Shame I've yet to actually do this but my long term plan was 1) given tool 2) taught how to use it 3) deal with demons 4) never see them again!

Once I'm better (and I will get there) I don't expect to see my team again.

I've just been discharged from the Complex Nutriton Clinic and I hope not to be back there!

 

[CCPM]

Oh how I understand what everyone says. Can only use the example of myself (i'm oh so important to me!!!!!! but also must say I have never done or been involved in research in this area as actually musculoskeletal issues are a 10 a penny research subject - anyone working in this field can find thousands of folks to draw their research subjects from)

I have serious spinal issues and other musculoskeletal problems. Before I got above 16 stones these occurred and were not weight related I was so called 'normal' for this research group. BUT and this is so important folks who have this type of problem are usually so scared by it they see a priority in ensuring it doesn't happen again. Its bleddy painful and they think who in their right mind would want to experience this pain again? This type of experience does not seem to be key to weight loss surgery folks. The majority think this is their OK coral experience, happens once then the outcomes are better. Now if your outcomes are crap you feel best slide away I'm a failure. If you are a 'success' either now - just got to target or much later managed to maintain well why bother - it doesn't concern or relate to me.

Again perhaps I can only relate to me and the research I've done and the way I cope being 6 years out. At present I have non-wls problems - that is OK isn't it? Nope it isn't. When my problems started the NHS insisted we had first to view them through the WLS lens. The medics seized on my medical oddity - WLS. Luckily I'm vaguely medical and have a medical family, many who are consultants now so they weighed in and I got sorted.

Please, please stick around after your first year its vital that real life experiences are captured. Because my family are mainly medical I am asked time after time to take part in WLS research. OK - fine but i'm an easily identifiable subject, how will research improve things if they can't access a wide range of subjects.

Sadly my much loved OH has a terminal diagnosis perhaps 12 months to live. He accepts it but he doesn't give up. His was a rare presentation of his disease, he passionately wants to get more folks involved in research to try to gather data to find a cure. I am sad but I understand the urge to see those who follow you into the experience to understand the need to investigate illness/problems and see wha their experience can contribute to coping or moving knowledge on.

 

[CCPM]

Sorry should have added in that my pledge to remain on the site and fight on for WLS may well now be restricted by my personal circumstances. I regret this as I so passionately believe in this fight. BUT how many folks in the last 6 years came, used the site for their own information or whatever…stayed around ……that would be almost 2. Says a lot

 

[Yvessa]

Firstly hon, I'm so sorry to hear your news I can completely understand your wanting to focus on your husband. Ultimately I think we are reaching a turning point where things will go one way or another. I think it will go towards increased research, but it will be from a monetary point of view - they have accepted the necessity of the operations, but not the necessity of dealing with the aftercare side of things.

 

[tranquil_butterfly]

CCPM I am so sorry to read of your sad news and understand the need to step back. I for one have always appreciated your posts. I have said before, your posts were one of the first I read and until I did, I really had no idea what WLS was all about. So thank you.

I agree with Yvessa that we are at a turning point. I guess it is down to all of us to keep fighting so that WLS does not become the next casualty of the cuts. Part of that fight is about ensuring we are not forgotten about 6 months or two years later when we are 'discharged'. It is clear that more research is needed on what happens after the surgery.

I wish you all the best CCPM.

TBx

 

[emma-louise]

So sorry CCPM to read about your husband...
You have been a great support to me and for that I'm very grateful.
Please take care of yourself and your husband x

 

[chrisa]

Yes CCPM you must do what is right for you and your family, this war you are fighting is just and we must all keep on pushing but you need to take time out to be with most important people at this difficult moment in time. Your opinions are greatly valued and always the voice of reason.

 

[kurstywursty]

I am so so sorry to hear your terrible news about your husband xxx

 

[CCPM]

t op.