Still a member!

[hannah-rose]

Hey so I saw my Consultant last night and after responding well to Remicade I thought perhaps he'd be able to confirm my diagnosis - I thought because I was responding to Crohn's meds it would prove I had Crohn's.

But he's still holding off saying that a diagnosis means I won't continue to get my private health insurance, and he says my symptoms are still too atypical to give a firm diagnosis. He said he'd prefer to wait until I'm better to diagnose me lol.

So I have to go back on the 3rd January, by which time he said he hopes I'll be healed, and we'll take things from there.

So I'm still with all you guys for the moment just gotta think healing thoughts until January (oh and the magic mouse juice should help with that too!)

 

[Mayflower537]

Well, since it would have impacted your insurance then maybe it's not such a bad thing to still be one of us. One day, right? At least you are healing, which is the main thing. I would say that being undiagnosed and on infliximab healing quickly is not the worst thing in the world. Yay for "magic mouse juice"!

 

[Cat-a-Tonic]

Hannah, on one hand that really sucks that you're still part of the club, but on the other I can see where your doctor is coming from, and it's good that you get to stay on your insurance for a few months longer. I don't know how insurance works over there - if you get a diagnosis of an illness like this, do they automatically drop you?

I hope the Remi continues working wonders for you! I read your blog earlier and it sounds like you're off to a very good start with it. Good luck in January!

 

[hannah-rose]

You guys are definitely right, better a doctor who's slow to diagnose and quick to treat than the other way around.

If I don't have Crohn's though..... what do I have??

 

[xJillx]

I am sorry you are still in club. Again, I agree with those above. It sounds like it is a good thing as far as your insurance is concerned.

"If I don't have Crohn's though...what do I have??" I ask myself that same thing, too.

 

[hannah-rose]

I don't know how insurance works over there - if you get a diagnosis of an illness like this, do they automatically drop you?

I have the option of being treated for free on the NHS, but I have private health insurance with my job - the benefits of private healthcare include being seen within one week, instead of six weeks, appointments outside of working hours and more time to spend during consultations (not to mention the nice country hospital covered in ivy with posh mahogany desks and a tea and coffee machine).

The majority of health insurance schemes dont cover pre-existing conditions, otherwise they'd never make any money! Because of the complicated circumstances surrounding my symptoms, BUPA decided to pay for all treatment up until a diagnosis (even though my symptoms are pre-existing) but as soon as I'm diagnosed, if my diagnosis is related to my previous symptoms (fissures) then I'll be dropped.

It'd be nice to be 90% healed by the time I get a new job and I'll lose my BUPA health insurance anyway

 

[robbo87]

Good luck with it all and i hope you are feeling better soon!

It may be crap not yet having that diagnosis, but the doctor seems to be doing it for the right reasons. and atleast like you say it means you can get seen much sooner should you have any problems!

but hey being treated on the nhs aint all that bad either!.... lol but obviously I'm not lucky enough to have private health care with nice posh hospitals so i would say that!

 

[Cat-a-Tonic]

Wow, so NHS hospitals don't even have a coffee machine?? That's crazy. All hospitals here have tons of amenities - I'm pretty sure there's a Starbucks in the hospital I go to. And when I was going to physical therapy for my hip, they had a smoothie machine in the lobby, and it was free. In addition to the free coffee & tea.

At any rate, coffee or no, I hope you get all healed up by the time you have to go back to using the NHS system! Will you be able to stay on Remicade when you come off of the private insurance?

 

[robbo87]

Wow, so NHS hospitals don't even have a coffee machine?? That's crazy.

I think she may be exagerating a little bit on that one... lol, all the hospitals i've been in have had coffee machines... one even had a little shopping area with a hair dressers and clothes shop!...

 

[hannah-rose]

Haha, no no they do have amenities - the Hospital in Cambridge has a food court and a burger king! It's really not that bad and yes Martin I agree NHS treatment is great!

When I first started having hospital treatment for my anal symptoms I was seeing a CRS who I really, really disliked (which was half the problem) and I was having to take a lot of time off work to have appointments, so when I was finally able to see someone privately it was a lot of relief for me because it meant I didn't have to worry about causing problems at work as I tend to have my appointments in the evenings, meaning it was much less stressful, and the hospital itself is less sterile and medical looking than an ordinary hospital, which is nice. It was just one of those lucky breaks really that after being incredibly upset by the treatment I'd received under the care of a CRS working at an NHS hospital, that I was able to see a really good consultant privately - for me it made a big difference emotionally, although I could technically see the same consultant on the nhs and I'd still be receiving the same treatment.

Cat, I'm having the Remicade at the NHS hospital as it's so expensive, I just go to the private hospital for my follow up appointments. It's just nice to be able to come home after work, have a nice sit down, change and relax before going back out to a medical appointment. I know how lucky I am though don't get me wrong and this is just a job perk and I'm likely to lose the perk soon enough!

 

[hannah-rose]

And yes martin I was exaggerating I meant that they dont have a coffee machine in the waiting room where I went for my appointments on the NHS, but they have a coffee machine in the waiting room at the private hospital. No burger king at the private hospital though

 

[Cat-a-Tonic]

Ha ha, good to know you can still get coffee and food at hospitals over there. The cafeteria at the hospital I go to is seriously amazing. No Burger King, but they have a salad bar, a sandwich bar, a burrito bar, every kind of beverage you can imagine (I can actually get chocolate soymilk there!). It's really good. My grandfather was in the hospital for over a month after his heart attack, and the cafeteria would make him all sorts of custom meals, whatever he wanted they'd make for him.

So, back on subject, you said Remicade is expensive - do you have to pay anything for it over there? I know that it's something like $4000 per treatment here so if insurance won't cover it then most people cannot afford it.

 

[beth]

You're getting Infliximab at Addenbrooke's. I guess then you're seeing Stephen Middleton? - a very nice guy!

Cat, we dont pay for in-patient treatment/drugs/etc here. Only a fixed prescription fee for outpatient drugs and then there are exemptions and pre-payment discounts.

 

[hannah-rose]

Cat -

Wow that sounds amazing! I've never been to the US but I hear the food is just general more exciting and certainly more abundant than over here! That's nice that your Grandfather was so well looked after

Nobody has to pay for Remicade here in England, it's is free on the NHS.

Under my health insurance if I needed a minor op or procedure I could probably get it done privately but for a big operation or expensive drugs like Remicade, I would go to a NHS hospital and have it done there like everybody else, because of the expense. Nobody in England goes without medical treatment no matter how much money they have.

Beth -

I'm actually getting my Infliximab in Bedford under the care of Dr Harvey, but I have been to Addenbrookes before (not for my health). Bedford hospital has no burger king it has a sort've bistro cafe where you can get sandwiches and jacket potatos, Addenbrookes is lovely though, I wish I was going there!

 

[StarGirrrrl]

Hannah, I don't blame you, if you need NHS care and you are a complex case you are screwed. I now have to have a Laparoscopy since I was denied 2 other, much easier tests, so I get to through the risk and trauma of surgery because the other tests cost too much! And this is 2 years down the line since I started getting ill again and came back for tests. I am expecting to wait months, not weeks for this op too (find out more tomorrow about the wait).

I certainly feel with justification that I am going without medical care in the NHS let me tell you, some of the waits I have suffered are 4 months for an appointment and like I said, 2 tests denied on cost grounds (one for sure was postcode lottery; which means in some local areas they fund routinely and others they don't, and I think the second one was too), one they took 10 weeks to deny, 10 weeks where I could have been on the waiting list for something else.

All I know is I am in pain and suffering every day and the NHS would rather count the pennies than help me.

I also cautiously support the NHS reforms whereby they want to take power away from PCT's and hand it to the Drs. I know for sure I would have had both tests if the Drs had the power since they both wanted me to have each test (even my useless ex-GI really wanted me to have the Pill Cam!). What makes it worse is one of the tests falls onto the "not routinely funded" list. With the exception of a drug to prevent blindness, all the other procedures listed are cosmetic!
Sorry but it's a pet peeve of mine when I hear people say everyone gets the care they need from the NHS, it's nothing personal, just in my case nothing could be further from the reality.

 

[StarGirrrrl]

Well lucky number three i've now been denied the surgery! How on earth I am supposed to get a diagnosis/ treatment when the Consultant trying to help me (Rheumy) is being blocked at every turn.

You grab that private health care and cling on for dear life Hannah lol.

 

[hannah-rose]

Aww stargirrl I'm so sorry what op is it they're denying you this time? I've not heard of anyone have such a terrible time with NHS treatment, I think a lot of it depends on what hospital you go to as some are currently struggling financially more than others.

The tests I needed - CT and colonoscopy and an examination under anaesthetic - are routine and were done on the NHS but I don't know what it would have been like had I needed a pill cam.

I know I had to jump through a lot of hoops and It took eight months before I had Infliximab but I think that's quite common.

Luckily my BUPA has only ever been needed for consultations, the perk being you get to see the best of the best in ur area, that means actual consultants not registras, and you don't have to wait long for an appointment.

I really hope something can be done for you soon, what about being referred to a different hospital?

Hannah xx

 

[archie]

Hi Hannah I agree to hold off with the diagnosis for BUPA but check your policy cover as with mine they cover me for acute symptoms of a chronic disease as long as it wasn't pre-existing prior to starting with them, so in theory any new symptoms popping up you should still be covered. They covered me for loads of investigations and even surgery last year, afterall thats what you pay them for.

 

[StarGirrrrl]

Hi Hannah, my Rheumy wanted me to have an exploratory laparoscopy, mainly for tissue samples I think. But the surgeon said he'd never done one for my symptoms and because my CT scan didn't show and inflammation (months old), ignoring my raised CRP in blood for 5 years and Rheumy did another special set of bloods to test inflammation which also came back as abnormal.

The thing is unexplained abdo pain is one of the things a laparoscopy is done for!!

One of the problems Rheumy suspects can only be diagnosed through tissue samples since it affects the layer of fat between skin and organs. So how can that be ruled in/out now? Also a PET scan would have helped with that to look for deep set inflammation but it was a no for that too (they took 10 weeks to turn it down, 10 weeks where I could have been on the waiting list for something else!).

I am in such a bad state now travel to another hospital is not possible, don't drive or have anyone who could take me so would be public transport. I looked into getting a Pill Cam on the NHS elsewhere but my local PCT would have to pay so they would refuse that and I can't afford £3000 to have it done on a private basis. Didn't see about the PET scan since the same issues would apply.

I will contact Rheumy to see what is to be done next week but honestly I don't think my Hospital, outside Rheumatology, are willing to do anything further for me And if Rheumy can't get anyone to help me then what can they do apart from the drugs trial (subject to funding approval!) which I am still in two minds about. Although he does have a bone marrow biopsy in mind as a back-up, but who's to say the same thing won't happen, I waste my time and energy going to that clinic and it's another no from them this time.

Repeat gastro tests are not something I want to do either right now, even if GI suddenly becomes helpful which is unlikely. My colonoscopy was in December 2010 so it could be time to consider a repeat but I do not feel strong enough for prep, it nearly finished me off last time and I was so much better then! GI likes to say IBS though. At the same time as openly admitting night attacks do not fit with IBS. That is how helpful they are in that dept.

I've always believed in the NHS but you can imagine my feelings now. You are fine if you need a few standard tests and that diagnoses the problem. Otherwise you are screwed.

I hope the Remacide continues to do the job for you and you are all healed by January!

 

[fosterschick]

:sign0144:stargirrrl you are really going through it bless you , i agree the nhs is a nitemare , not to mention they lie to you too !! i once got told a sigmoidoscopy saw the whole colon and i jus had ibs ( which i may still have like you i am going through the diagnosis bit !!)then only a few months ago i was admitted to a n e with an obstruction finally after waiting 10 weeks to see a consultant to see about possible narrowings , he proceeded to tell me i had constipation and was ideal to try his new trial drug for it GRRRRR !! when i told him that it was no longer my problem it is pain and weight loss , he proceeded to tell me the only way he could see inside me was to cut me open and pull my bowel out !!! i demand a barium enema and transit study , i get results of them on thurs ( ther was an abnormality on barium ) and to top it off the consultant wrote back to my gp to say i was accepted to his trial drug as i was not in pain and weight was fine ( my gp is very supportive and is really annoyed about all this !!! ) in emergencies our nhs is great but this kinda stuff they are rubbish , just dont listen to the person in pain !!!, stargirrrrl stick to ur guns you sound like you are really going through it , it wants sorting we only have one life and it should be lived !!! xx:goodluck: