Anti-TNF, An Arrogant Nurse, and the wonder that is England's National Health Service.

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JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 7/29/2010 3:52 PM (GMT -7)   
I went with my sister to see a nurse today for her 2nd assessment prior to starting Anti-TNF therapy. I am already on Etanercept so I went with her to provide support.

The nurse, who made three mentions of the overwhelming cost of the product, barely inspected most of her joints before declaring she was not swollen enough to go on the Anti-TNF therapy. Now I may not be as experienced as a nurse in declaring whether or not a joint is bigger than it is suppoed to be, but I counted 12 swollen joints, and my sister concurred. The criteria requires three. You can SEE the fluid under her knee it is that bad.

The nurse was highly patronising, and tried to give me a lesson on "what it's like to have arthritis", given I've lived with it for 18 months, I'm fully aware. She then proceeded to explain to me, a trained chemist/engineer, how these drugs work , tragically wrongly. I am under the impression that they had decided not to give it to her before even seeing her.

The most frustrating thing is, I met the criteria with far less swelling, under a FANTASTIC rheumotology clinic, and she dismissed it, saying my rheumotologist, as a world leader, "can get away with a lot more" - actually I was subjected to the NICE criteria for administration like everybody else.

I feel powerless to help my sis, it's not fair that I should be on it and her not! Under her "standard" NHS care, it took over 12 months for her to be prescribed MTX, whereas I was on it within 2 months of diagnosis, and Sulfasalizine by the third, and Anti-TNF within 7 months of diagnosis. There's also much debate as to whether she has PsA or RA, but my doctors are now convinced I have PsA, so it is extremely unlikely my sister will have a different form - the assessment criteria for PsA is much lower than RA for Anti-TNF therapy.

Sorry, I just needed to vent, I was VERY angry at both the nurses involved, and had to seriously bite my tongue.

James

SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 7/29/2010 5:58 PM (GMT -7)   
Hi James,
Sorry if Im a bit slow on the uptake here yeah   but is it the nurse the one who recommends the TNF therapy based on her findings and not a Dr.? If so, based on what you have said, she didnt really give your sister a chance from the start.
I dont blame you for feeling angry if this is what you deal with from health professionals.
Maybe your sister would be better off seeing your Rheumy too.
Vent away on here any time you need to.
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 7/29/2010 6:20 PM (GMT -7)   
She cannot see my Rheumy unless she is willing to move to a different county, as the health service is "localised", and I happen to go to a University with an attached teaching hospital that does a lot of Arthritis study, hence I was able to register there. She could potentially pay, but this very expensive and would be a long waiting list.

The doctor carried out the initial assessment, she told him I had PsA and so she likely had PsA and not RA. He wouldn't change it, then she name-dropped my Rheumotologist (one of the most cited, globally, but I won't post any names in the public domain!) and he immediately accepted it and provisionally authorised anti-TNF.

The criteria for prescribing it is at least 3 swollen and 3 tender joints at two assessments, four weeks apart. The doctor authorised the first one, the nurse performs the latter.

I'm fairly certain the nurse intentionally lied at one point, (or is guilty of malpractice through ignorance). We demonstrated my sisters knee as being inflamed and swollen, the nurse claimed it was synovial thickening rather than swelling due to fluid and didn't count. She demonstrated a piece of damaged cartilage visibly moving in and out of the side when she bent and straightened her knee. Basic physics dictates that this may only happen due to a change of pressure, which is only possible if there is fluid, she added the fact that her Rheumy confirmed fluid last time, and the nurse conceded. She was trying to pass it off as something else to avoid prescription, I'm sure of it. We got a second opinion from another nurse, but naturally she wouldn't disagree with her colleague, but did find more swelling.

At my clinic, I received 3 MRI Scans, an Ultrasound of about 25 joints, Xrays of hands and feet, and about 15 blood tests. Both on the National Health Service, it disgusts me - the amount of tax we pay. The british government prescribe Heroin and Methadone to addicts at a cost of £15,000 PA (MORE than Anti-TNF), and yet won't prescribe this to hard-working individuals who desperately need it. I realise my argument here isn't sound but I'm so frustrated.

Thanks for your reply :)

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 7/29/2010 6:42 PM (GMT -7)   
cry  It is so frustrating and utterly remarkable the way these Doctors practice. Whether here or there it seems the protocol for Dr.'s and there assuming nurses is the same. I'm sorry, Jay, that your sister having such a difficult time..adding to that the stress of not being able to obtain the medication she so desperatly needs. I have no advice, and for that I am sorry, but I do send gentle hugs your way to both you and your sister. I hope at some point the system will change for the better of the people it is meant to serve. Hang in there. She is lucky to have your support. Heather
Mama6


wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 7/29/2010 6:59 PM (GMT -7)   
Wow that's terrible that her health is at the mercy of the healthcare system! It is a well known fact that the sooner you can get on meds that cause the progression of RA to slow the less damage that occurs. I hope you can find a way to fight it and get her what she needs- all the best to her.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 7/29/2010 7:16 PM (GMT -7)   
Thanks for the support guys. It's kinda strange being told you have arthritis of all things, at 21 years old!

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 7/29/2010 7:37 PM (GMT -7)   
21 is such a young age to have that be a dx. They say what doesn't kill us makes us stronger..course I'm still leary of that saying. Only so much we can handle, huh? Take care.
Mama6


wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 7/30/2010 7:43 AM (GMT -7)   
JayBespoke said...
Thanks for the support guys. It's kinda strange being told you have arthritis of all things, at 21 years old!
 
 
Oh James don't get us started- people think of RA in comparison of osteo arthritis and there is no comparison. This isn't any "old age" disease.  We have an auto immune disease that needs toxic medicines and since it is systemic can have many serious complications. The only similarity is the word arthritis and that they are both painful.
 
In any event- 21 is young to have to face this. It hit me at 47 and I wasn't ready then to give up what had to been given up do to this stinking disease. I hope you find good control with your meds and it stops or at least slows down your RA a lot. All the best to you.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 7/31/2010 3:44 PM (GMT -7)   
Weary - I'm sick to the back-teeth of having to explain this to people who are under the impression that it's OA and I'm "occasionally a bit stiff" .... I dislike the naming convention and think perhaps RA/PsA should be renamed!

Thanks, all the best to you too.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/1/2010 9:06 PM (GMT -7)   
Hi James,
I would never have thought you were only 21 - you are wise beyond your years!

I didnt realise that your health system was set up like that, its good to learn how other countries operate.
As for explaining how we are, I give up myself. I just tell people Im a bit stiff today, thats what they want to hear.
Take care
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/3/2010 5:26 PM (GMT -7)   
Jay, unless they have to go through even a minut second of what we feel, they will never understand. I feel like it takes moments from my life that I will never get back having to explain, to those that probably will never get it. Take care of yourself..you are the only one in the end that will.
Mama6

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/15/2010 1:33 PM (GMT -7)   
Follow up appointment for my sis tomorrow - feels a little bit like preparing for battle, if the government insist on taking charge of it's citizens healthcare, I wish they'd do it properly. I'm losing faith in the medical profession rapidly, glorified biology graduates.
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Diphenhydramide, Paracetamol, and SCOTCH.

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 8/15/2010 6:54 PM (GMT -7)   
Oh boy- all the best to her for a decent doctor visit. The way I look at it- there are doctor's who get A's in their college courses and those who get D's- ....
Let us know how she makes out!

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/16/2010 6:05 AM (GMT -7)   
Got my dates wrong, it's tomorrow!
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Diphenhydramide, Paracetamol, and SCOTCH.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/17/2010 8:02 AM (GMT -7)   
Right then... all notes regarding my sisters last appointment, whereby she had 'passed' the assessment, have gone missing.

They decided to "start again" giving that they felt that they were too rushed last time, and that the appointment was inadequate.
After a "pseudo-checkover" as I'll call it, the nurse determined that the national criteria had not been met, when I produced a copy of the criteria, and demonstrated it clearly had been met, she mumbled a lot about funding and said she didn't make the rules.

I don't doubt an incompetent, cowardly nurse such as herself, with absolutely no backbone, doesn't make national health policy. It is quite evident to me that she us under pressure from above to now allow any prescriptions of anti-TNF therapy - the referring doctor is from a different "funding-zone" and so would be unaware of this - which is why she was remarkably 'assessed' for it in the first place.

The worst thing is, how can I fight it? What can I do? The corruption and inepitude runs to the very top, and in all honesty, big pharma is almost as much to blame for charging such ridiculous amounts.... feeling truly lost now.

James
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Diphenhydramide, Paracetamol, and SCOTCH.

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 8/17/2010 10:31 AM (GMT -7)   
Wow- I don't know where you go from here. I have no knowledge of the UK health care system and how it works.
You have a good head on your shoulders and I'm sure you will find out exactly who the next person to pursue is. Your sister is lucky to have you.
You are right about the costs being inflated. Here I was able to get Abbott to pay for all but $5 a month for what my Humira prescription would have cost me after the insurance paid their portion. I am very grateful but what that tells me is they are already making plenty of profit on what the insurance company reimburses them alone. We all know insurance companies don't pay the full amount they are charged....
 
So do you have to pay health premiums at all or do you get all this "great" health care for free?  I pay a little over $100 per week that gets taken out of my paycheck. I pay 20% of the premium- my employer pays 80%.
 
Sorry your sister has to suffer in the interim. How is she feeling?
 
 

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/17/2010 11:07 AM (GMT -7)   
There are no healthcare charges in the UK, it is paid for with "national insurance", which is one of the many taxes that comes out of our wage packets. Waiting lists are notorious, and getting treatment takes a very long time. Things like X-rays, Ultrasounds, and MRI scans are very hard to come by, as is any expensive treatment, such as anti-TNF. England is supposed to be a highly developed world leading country, yet it is quickly becoming a laughing stock over Europe. I'm considering moving to France/Germany at some point, to take advantage of the European Union!

You can get health-insurance and go to a private hospital, but I can't now that the condition is pre-existing. Private healthcare is usually in the same hospitals, and often with the same doctors anyway. I have occasionally paid private fees in order to jump waiting lists, but a single consultancy will cost £100+ ($155+) , without any treatment or meds.

I have fortunately been part of a clinical trial comparing treatment methods in Psoriatic Arthritis, and I fell into the "intensive treatment" category, meaning I get MRI scans, Xrays, Ultrasounds when necessary, and without the waiting period normally necessary (i.e. 5 days instead of 10 weeks). And I escalated through the available meds very rapidly, finding myself on Etanercept and MTX 25mg after 5 months of the study. This finished three weeks ago, I will continue seeing the same doctors until they are happy I'm "stable" and then I will reintegrate into the normal clinic, which means being seen 4 times a year, and seeing a different doctor every time.

I had to experience the 'normal' treatment twice before I found the study (or rather it found me), I was faced with Indian/Eastern European/Junior etc* doctors with (often) limited English who basically recite things from the literature, but have no real grasp of evidence based medicine. I once got a bollocking for taking 200mg Ibruprofen with 75mg Diclofenac SR because they're both NSAIDs. Any decent doctor would acknowledge it was a low dose of Ibruprofen, and unlikely to cause issue with a slow-release formation of diclofenac... Plus, if I was given decent meds, I wouldn't have needed to do it! Oh god, how I look forward to being back on the NHS (national health service).


hah, that was quite the rant.

To be honest, I don't really know very much about the American system. We heard about some palaver with Mr. Obama changing the law so it was more accessible. And the general (ignorant) opinion is that the US health-care system is much worse than ours, not due to quality, but due to insurance companies and difficulty getting treatment. From what I've read, the opposite seems to be true. The worst thing is, I can't escape, no insurance company will cover arthritis treatments (obviously), so aside from becoming rich, I'll have to get my treatment from the UK.
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Diphenhydramide, Paracetamol, and SCOTCH.

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 8/17/2010 7:17 PM (GMT -7)   
Ah yes more accessible at the expense of my pocketbook. My rates went up 20%, my deductible went up an additional $100, less services are covered at 90% before you hit your deductible and some services have co-pays as high as $200. Thank you President Obama. Frankly those people who did not have health insurance still went to the ER and were treated for free. I can't complain much. I feel I am able to get treatment and have a say in my treatment- it's just soooooo expensive. However I would rather have the choice to pay for it then be denied.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/18/2010 6:56 AM (GMT -7)   
My sister would suddenly meet the criteria, if she were willing to part with $16,000 (that's what my Rheumotologist told me it costs the Hospital per year)

I'm thinking that if we pay for an ultra-sound, then we can offer irrefutable proof of the inflammation/swelling to the clinic, and then they can't so easily refute the claim, though I don't know if this would work, given I sufficiently proved the criteria was met 2 weeks ago, and all evidence of this has disappeared now.....
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Diphenhydramide, Paracetamol, and SCOTCH.

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 8/18/2010 10:53 AM (GMT -7)   
money money money!
Isn't that a b---tch about RA- things come and go so fast and they never show up at the doctor's office!!!!

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/18/2010 1:49 PM (GMT -7)   
Actually what I meant was the nurse "lost" the documentation!
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Dihydrocodeine, Paracetamol, Diphenhydramide, and scotch

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