Journey over before it Started :(

[NEDebz]

It's taken me 5 days to even get my head around this to be able to post it.

I went to see my GP on Friday to request a referral and to apply for NHS funding. She was so shocked at my request. I have a history of mental health illness, I have Borderline Personality Disorder, and have been hospitalised in the past because of suicidal ideation. However it's been over 18 months since my last long term hospital stay and about 8 months since my last overnight stay (following an overdose).

I have been working hard over the past 18 months or so to work with the MH services to get my condition under control and have partaken in various therapies to the point where I now probably don't fit into the diagnosis criteria for BPD. I'm still having counselling of various sorts, I attend a group therapy session for women with eating distress (I found this myself rather than go through the NHS), I have a nurse who visits me fortnightly and I'm about to start on therapy that will specifically look at my emotional reactions to daily stresses and my feelings of low self worth.

I believe that I am a compulsive/comfort eater which is why I sourced and attend the group therapy sessions, I certainly seem to have a strong link between emotions and food. I also strongly believe that one of the reasons I suffer with low self worth is due to my weight issues as I've received many discriminations in the past (as have us all).

My GP weighed me and calculated my BMI at 55.5 I now weigh the heaviest I have in my whole life. She thinks it is possible that I have sleep apnea and have been referred to see a specialist but she says that I will never be able to have WLS on the NHS as they simply don't give it to people who have had MH issues, whether past or present.

There is noway I can afford to go privately and now can't see anyway out. I feel as if I'm trapped in this hell hole of a body. I know that I am at serious risk of health problems due to my weight but I simply can't do it by myself, I'm unable to be prescribed WL medication due to my other medication and am just waiting to have a heart attack or similar. I have two teenage daughters and a lovely husband, I don't want to go yet but don't know what else I can do

 

[Mark01/05/2009]

Hi Debz

Im really sorry to hear things arent going well for you. I can see your doctors point though, you say yourself "I certainly seem to have a strong link between emotions and food." - If you have this op, you wont be able to fix the emotions with food anymore, so how are you going to fix them?

Your doc may see that without the food, your previous ill health may return? Hence why we all have psych tests before ops....

I know my post is not very positive and encouraging but once you have totally got yourself right mentally e.g finished all the therapy and nurse visits etc, things might be different with the referal.

Mark x

 

[Fashionably Late]

I am so sorry. I would contact your PCT and explain what you have written here. There have been others with MH issues that have received the surgery. See what the PCT says before you give up completely.

 

[swizzlestick]

Hi NEDebz

Firstly can I say well done at trying tog et on top of your MH issues, it sounds like you are on the right track.

I have to say that your GP isnt really the one to decide whether or not you are mentallly competant or not to have wls. I would have pointed out to her that a doctor isnt prevented from becoming a doctor because they are bi polar so if someone with MH issues can become a doctor and make decisions about other peoples health then why can you not make decisions about your own health?

I would ask her again for a referral or see another gp int he practice. Of course your MH should be a factor in the overall decision, it would be irresponsible for it not to be, but havign siad that, each person should be viewed on their own merits.

Some of the bypassers on this site have diagnosed MH conditions, I am not sure if they went private or not, but I hope they see this thread and reply or pm you.

If you have sleep apnoea this is classed as a co morbidity of obesity and can support an application for funding. I think though you need a multidisciplinary team to assess whether or not you are suitable for this surgery, not a general practitioner. And the only way that can happen is if you are referred for surgery and psychologically assessed in relation to the surgery.

Have you tried other methods of weightloss? I assume you have otherwise you probably wouldnt be here.
The fact that you are also unabe to try other weightloss meds also supports an application as do any other physical health issues.

I would try again. Dont give up just yet. I know there are no guarantees, but just because you have MH problems it doesnt mean that you are not capabe of rational thought or making decisions.

Good luck Xx

 

[NEDebz]

Thanks for the replies.

Mark - I understand what you say about me being in a stable MH position before surgery, which is why I have waited before going to see my GP. I have thought about surgery on and off for 4 years but knew nobody would even consider me in the past as I was desperately unstable. Certainly in the past I was only allowed 3 days medication at a time and 2 years ago this appointment with my GP would have resulted with me in hospital.

Fashionably Late - is it ok to contact the PCT and not go through the GP? I would've thought that would be frowned upon? I don't want to upset anybody on the way and hinder my chances even further.

Swizzlestick - yeah I've tried other things, I've tried WW, SW, Rosemary Connelly, Scottish Slimmers, Slim Fast, Cabbage Soup Diet, WL meds (before I was on my current medication). I really don't know what else to try.

For me to be even thinking of how to prolong my life rather than end it (which is where I was 18 months ago) is a massive improvement. My ex husband and father of my children is in the latter stages of Muscular Dystrophy and very nearly died last winter so it is inevitable that my girls are going to loose him within the next few years. I need to be here for them and need to be in a position where I can give them all of the support that they're ever likely to need, I honestly doubt I'm going to be able to do that for much longer as my weight is interfering in my life too much.

 

[rybens]

hiya debbie sorry you feel like you have come to a stand still , but it is not cut a dried that your wls journey is over as others have said there are people who have had wls with mh issues id go back and tell your dr yes you understand there views but maybe coud you be refered to somone more in the know about wls x good luck babe keep pushing forward x

 

[phatgirl]

Firstly I wanted to say that you are very brave and I wanted to commend you on your ability to think ahead and try to make yourself well. I know it has got to be tough and it really does seem like you have come a long way already.

I have to say a disclaimer here, I am not a health professional, I do not know the policies of you specific PCT and I only know of your medical conditions what you have stated. That said I would tell you not to give up. It is my understanding of NICE guidelines that people with MH issues are not excluded. What happens though is that your MH status is evaluated, and it is determined if the surgery would have a negative impact or a positive one. Also you would be evaluated for the amount and type of support you would need after your surgery. Because they cannot in good faith give you an opperation that a medical professional feels would be detrimental to you health (metal or physical), the evaluation is very important. You GP should not deny you the right to persue this option, that is up to the professionals involved with bariatric surgery approval. I myself would ask my GP again and then seek out another GP in your practice if you don't get the referral.

Best of luck to you, please let us know how you get on.

Nic

 

[cherrydrop]

Is there any way you could see another doctor?

 

[quetiapina]

Hi Debbie, I like you have MH issues. I have severe Bi-polar and I feel that your GP is woe-fully ill informed re. WLS and MH.

Firstly, I am disabled by my illness, I don't know if you are but no-one can discriminate on the grounds of your disability/condition.
2). It is up to your MH key-worker/psychiatrist/cpn/ Service Provider (e.g. Mind or NSF) to ensure that you are properly assessed. As you have been hospitalized in the past your condition is way above Primary Care and I expect you will be under a specialist ( ie a Psych)- would the GP presume to make diagnosis/prognosis with heart problems/epilepsy/cancer etc.? No, the GP is a gateway to the Secondary level of care and so it is with MH.

I had to have my OP privately due to lack of WLS where I live. However I do have exceptionally good Psychiactric care and my psychiatrist wrote to the Specialist outlining fully why me having WLS was a good idea and why she supported it.
Do you receive DLA? If you do then you are reg disabled and thus the services should not only be caring for your illness but also your quality of life. Your life would be made far easier if you didn't have so much weight and the issues that surround (all of us here I expect) this - self-confidence, mobility etc.

I seriously feel that you need to research this thoroughly, talk to your MH team, and go to a GP who knows what they are talking about.

I will say that with my illness it has been quite difficult with not having food as a crutch. I was recently hospitalized for the first time in 4 years (I have an excellent CPN and Psych), and part of this I think was due to one of my coping strategies (albeit a negative one) no longer being there. So be aware of this- however, your condition is considerably different to mine so you may well not find this happens. Also, as you have said - you have done an awful lot of work on yourself which I know from friends with BPD is very tough - so well done on that - I really admire you for that. Are you on medication? Has there been any changes - this too is relevant to your application for WLS.
Please feel free to PM me

Jen x

 

[quetiapina]

Also: another important point is that a lot of Psychiatric medication is notorious for weight gain:

Neuroleptics e.g. Quetiapine (see where I get the name?!); Respiridone; Olanzapine; Largactyl; Halperidol and others are particularly well known for weight gain.

Mood Stabilizers such as Lithium cause weight gain. I'm on an Anti-epilepsy med but I don't think these cause weight gain (e.g. Carbomazapine/Lamotrogine etc.)

Some Anti-depressants also can affect weight.

Good luck to you x

 

[tarara]

As everyone else has already said don't give up just because your GP won't refer you, either see another GP or go over them. I have MH issues and am under the physciatrist(sp?) and he is one of my biggest supporters for having the surgery. My usual GP actually sent me to see another of the GPs at the practise as he is more clued up on the whole WLS thing.
Good luck and well done for having come so far x

 

[Sambucca]

Debz, youve had some wonderful advice so far. Maybe print this thread off and take it to the Dr with you. Tell them that you feel you are entitled to a referral and you would like the bariatric specialists and their psyche teams to be the ones to decide if you could cope with the surgery.

Wishing you the best of luck xx

 

[yorkiegal]

Just bumping this thread because I wondered if there had been any progress for the OP.
My situation is so similiar. I have a diagnosis of Borderline Personality Disorder too, was hospitalised two years ago but have been stable for 14months now ever since I went onto quetiapine. I'm not even seeing a psychiatrist anymore. I've put a lot of work into understanding my condition and even spent a year having full time group therapy in a therapeutic community.
My gp said I may well be refused wls because of my diagnosis, even though he agrees people like us would probably stand to benefit the most from having such life changing surgery.
I can't afford to pay for surgery privately but would be more than prepared to use my DLA to pay for therapy pre and post op to help me deal with the surgery.
When you have BPD it really feels like the NHS have just given up on you and only want to medicate you until you go away and die somewhere. Like the OP, just the fact that I want to look to the future and take care of my body is a huge indication of how well I am now.

 

[phatmomma]

I too would like to know how the appeal for a referral is going with the doctor.

I look forward to hearing good news xx

 

[jaxx]

I have a history of clinical depression and I have been voluntarily hospitalised because of it and I had to have a psych evaluation before it was decided I could have surgery. I'm now post op and doing ok. I definitely think the OP should as for a referral at least, it's up to the bariatric team to get a psych assessment for surgery not your GP.

 

[j.u.s.t.l.i.z.]

Debbie please come to the meeting on thursday night hun and we shall try and get to the bottom of this, i thought you had already had a referal and a seminar, anyway people often ask at the seminars about depression ect and they do give people ops that have suffered with depression we have support for that side of things as well with in our team at Sunderland, you are so entitled to a referal from the gp as its the surgeons decision if your suitable for surgery and not the gp's. If this is a old thread then scrap what ive said but either way be nice to see you at our next meeting x

 

[yorkiegal]

Hi Debzy
When you say it was your mental health that swang it in the end, do you mean that they realised your mental health would be much better with the op? I'm really hoping they think the same with me too, rather than use it as a reason to say I won't cope with the restricted diet.

 

[NEDebz]

Hi Peeps

Sorry I haven't been around but here's an update on how things have gone.

A few weeks after I posted this thread I got a letter from the hospital with an appointment!! My GP had refused before even weighing me & I suppose she had second thoughts once she reviewed things & realised I had a BMI of 55 & possibly had sleep apnoea.

The hospital that I was referred to have a seminar as your first appointment so I had that in the middle of January. I'm not really sure how things work, I guess it will be when I see the consultant on a one to one basis that he'll decide if he's prepared to give me surgery and I'm not expecting that appointment for another six months.

However in the meantime I have now been diagnosed with mild sleep apnoea & use a CPAP machine each night. That consultant has told me that the only way I will successfully get any long term relief from this is by losing weight. In fact when I went to the WLS seminar the consultant told us that WLS has a 100% success rate at curing sleep apnoea.

Additionally, I have had an appointment with a new psychologist who has queried my initial diagnosis as seemingly sleep deprivation (caused by sleep apnoea) could cause a lot of the symptoms I had been suffering from. He does think that I suffer from depression, PTSD and anxiety. We are working on the PTSD via one on one therapy. He has also referred me for group therapy for comfort eating & mindfulness (to help regulate emotions).

On an even more positive note it was one year on Saturday since I last self harmed or took an OD. It has been hard at times but each day makes it easier.

Back to WLS though, I have no idea as to whether I'll be accepted for surgery due to my mental health & I've read on many mental health forums of people being refused surgery due to their mental health. Whether these people were on the path of recovery or not I have no idea. So all I can do now it wait and hope

 

[NEDebz]

Sorry Liz, forgot to say I'll be there on Thursday xxx

 

[phatmomma]

That sounds much more positive for you Debz!

Keep us posted xxx