ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: goinbatty on July 15, 2012, 03:32:29 pm
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http://www.dailymail.co.uk/health/article-2173594/NHS-refuses-fund-treatment-brain-tumour-making-Angela-Steel-deaf.html
Interesting article. In the US, this likely would have been approved.
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Great article - thanks for posting. Unfortunately, with ObamaCare this will be the sort of thing we will have to deal with in the USA in the future - more government intervention.
Sheryl
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Thanks for sharing this. I don't understand why...... The UK has CK.... and is proven for the treatment of AN's. She is certainly located in an area that she doesn't have to travel far for the treatment (they even have CK at Horley St in London.... they say she is located in N. London). If there is an appeal process...... maybe worth processing.
Derek... if you see this, maybe you can shed some light on this?
Phyl
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The article implies or states that CK is more successful than surgery in treating tumors less than about 2 cm? Does this mean it is also better than gamma? It also seems to be best for hearing preservation. As I am considering all three, your input would be helpful.
I think in a noble society, once a problem is diagnosed, the best method for life preservation should be enacted. Why should cost be a factor. Honesty and asessment and dedication to excellence should be the factors for approving health care. If Obamacare disallows this, then it's not for us. There is plenty of waste in other programs. Let true quality control ferret out and cut those.
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...Derek... if you see this, maybe you can shed some light on this?
Phyl
Within the UK National Health Service (NHS) there are approximately 150 locally based Primary Care Trusts (PCT's) each managed by a team of executive directors headed by a chief executive who are also members of the PCT board and have various responsibilities including the control of financial expenditure. Hence, we have a post code / zip code 'lottery', illustrated by the news article in question, whereby CK could be authorised by a PCT in a particular area but refused in another PCT area....such 'bean counting' is very frustrating!!
However, all PCT's are due to be abolished in March 2013 and replaced by local GP led Commissioning Consortia thereby placing budget controls with Doctors. It remains to be seen whether this will improve matters as the control of financial expenditure will still be monitored and operated. Hopefully Doctors, being aware of the importance attached to CK / GK treatment for acoustic neuromas, will authorise such treatment as a priority.
For those who are refused CK/GK and do not have health insurance cover, the only way forward is to privately finance the treatment.
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Hi Derek (My W&W buddy) - thanks for the explanation. Isn't it a sad state when money matters and government get in the way of the best care for the patient. Even if they put budget control with the doctors, there will probably be limitations put on them too. Yesterday there was a talk show on T.V. where they had three doctors - one had closed his private practice already because of low reimbursement from the government (our Medicare and Medicaid) system, one was considering it, and the other was moving to a hospital-based practice which, in the long run, would end up costing the consumer and the insurance companies even more but would give him a definite salary every week.
Sound like things are going well with you :D
Sheryl
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I think in a noble society, once a problem is diagnosed, the best method for life preservation should be enacted. Why should cost be a factor. Honesty and assessment and dedication to excellence should be the factors for approving health care. If Obamacare disallows this, then it's not for us. There is plenty of waste in other programs. Let true quality control ferret out and cut those.
Good points. However, when the money being spent is, in effect, other people's, whether via taxes in a government-administrated health care system, as in the UK, or in the form of ever-higher premiums in the current U.S. system that relies on private health insurers, costs will always and necessarily be a factor. Nothing is ever really 'free' and that certainly includes top-notch health care. From hospital doctors and nurses to the janitors, people have to be paid. Sophisticated medical equipment is expensive and the manufactures don't give it away. Utility bills come due each month for both hospitals and doctors in private practice. On it goes and one way or another, someone has to pay and that 'someone' is us. Whether through higher taxes and somewhat restricted access to high-quality health care or via higher insurance premiums and cost-based limits on tests and treatment the financial aspect of quality health care cannot be ignored, unless the patient is fortunate enough to be able to pay 'out of pocket' for his or her care...and we all know that is rare. This is the reality we all have to deal with whether we do so via a totally government-administrated health care system (Europe) or with a mixture of government-administered medical insurance and private, job-related 'private' medical insurance plans (U.S.). Costs can be shifted around but not ignored. Free societies choose their methods of paying for and administering health care but what is effective in countries with small, homogeneous populations such as Sweden, Canada or the U.K. is not necessarily right for America with it's 320 million people, a third of them overweight. However, whatever a nations medical system construct may be cost-effectiveness will always be an issue because, in the final analysis, nothing is ever truly 'free'.
Jim
Now, back to the topic at hand (CK).
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...Derek... if you see this, maybe you can shed some light on this?
Phyl
However, all PCT's are due to be abolished in March 2013 and replaced by local GP led Commissioning Consortia thereby placing budget controls with Doctors. It remains to be seen whether this will improve matters as the control of financial expenditure will still be monitored and operated. Hopefully Doctors, being aware of the importance attached to CK / GK treatment for acoustic neuromas, will authorise such treatment as a priority.
For those who are refused CK/GK and do not have health insurance cover, the only way forward is to privately finance the treatment.
Derek
Thank you! My bloke and I took quite an interest to what you shared here. He, as you know, is also from the UK and has been following the press regarding this exact issue. He viewed your response and noted that the change from the current system to the doctor controlled "could" be worse if Cyberknife (CK) does not have enough support amongst the doctors....... this whole new system of doctors making the decisions are subjected to influences as bad as anyone else... thus, not sure if it will "cure" it or move the issue along to another direction.
So, it is the idea that the money being spent will be directed by the doctors, not like here in the states, like insurance companies, thus, your comment re: private pay will come into play.
It will be interesting to see how this goes in March 2013 and onward... and as for this woman that is desiring the CK treatment for her AN..... and as we know, CK can be a very expensive procedure (possibly even less expensive than surgical procedure), then is there anyway her doctor can appeal on her behalf?
Thanks!
Phyl
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I really don't understand this issue, as far as cost and efficiency. CK would be half the cost of surgery and with no hospital stay. Minimally invasive. Their argument is flawed so it seems.
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I really don't understand this issue, as far as cost and efficiency. CK would be half the cost of surgery and with no hospital stay. Minimally invasive. Their argument is flawed so it seems.
Perhaps the 'bean counters' are apprehensive that the CK process might not be successful and that necessary further treatment by way of surgical intervention will increase the overall financial outlay for a patient's treatment?
Derek
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... and as for this woman that is desiring the CK treatment for her AN..... and as we know, CK can be a very expensive procedure (possibly even less expensive than surgical procedure), then is there anyway her doctor can appeal on her behalf? Thanks!
Phyl
[/quote]
Phyl...
There is indeed an appeal system against the panels process. The appellant must write to the PCT in question within one month of the refusal outlining concise reasons for the appeal which can only be made if the appellant or the appellant's doctor are of the opinion that the correct process was not followed and / or the panel did not take all of the information available to them into consideration.
All appeals are considered by a seperate panel and if it finds that there has been a breach of the priniples then the matter is referred back for the original funding request to be re-considered.
The appeals panel does not consider any new evidence but if there is new evidence to support the granting of the application then the appellant's doctor must make a new submission.
Should the formal appeal be further refused then the appellant has the right to refer the matter to the NHS complaints procedure.
Regards
Derek
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Derek
On another subject I wonder if you can refer me to your information as to how you self reduced your tumor.... I am innately curious.
Sharon
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Another question. If CK is available , is it being used? We all know CK can treat different conditions in different parts of the body. That is one of the benefits of the CK machine. Does treatment for one condition cost more than another? I think that would be a good place to start looking for answers. Is the CK being used, and what are the costs involved in any CK treatment? Or are they just discriminating against using it for AN's.
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Derek
On another subject I wonder if you can refer me to your information as to how you self reduced your tumor.... I am innately curious.
Sharon
Hi Sharon...
In brief (and apologies to the mods for this thread going off-topic) I personally have not self-reduced the AN, rather 'it' has reduced in size periodically since diagnosis over 10 years ago.
The sticky thread 'Top Tips For The Watch & Wait Brigade! within the 'Watch & Wait' sub forum contains many hints and tips such as maintaining a good diet, regular exercise, sufficient water intake and a general healthy lifestyle. This, together with regular professional medical guidance and MRI scans and the most important factor of developing a positive mindset that I am in total control of the AN and not 'it' being in control of me, in my opinion, have all been a successful strategy for me.
Regards
Derek
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I've worked for several smaller insurance companies as a utilization review nurse, reviewing cases for appropriateness of care. There are criteria/guidelines for just about any procedure you can think of. Here's an example
http://www.anthem.com/ca/medicalpolicies/policies/mp_pw_a050201.htm
By the way, my new son-in-law is British so I try to keep up with what's going over there even though they live here in the US.
Sandra
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Derek
On another subject I wonder if you can refer me to your information as to how you self reduced your tumor.... I am innately curious.
Sharon
Hi Sharon...
In brief (and apologies to the mods for this thread going off-topic) I personally have not self-reduced the AN, rather 'it' has reduced in size periodically since diagnosis over 10 years ago.
The sticky thread 'Top Tips For The Watch & Wait Brigade! within the 'Watch & Wait' sub forum contains many hints and tips such as maintaining a good diet, regular exercise, sufficient water intake and a general healthy lifestyle. This, together with regular professional medical guidance and MRI scans and the most important factor of developing a positive mindset that I am in total control of the AN and not 'it being in control of me, in my opinion, have all been a successful strategy for me.
Regards
Derek
Kudos to you Derek with your strategy at least it is not something that is going to harm you like so many medications with there side effects and it is because of you, Mike and several others I am also starting to maintain a healthy lifestyle and so far the residual that was left has not grown and if comments and lifestyles with the W & W have helped mine that is okay with me continue to emphasize there are other choices besides, surgery, radiation as long as the AN's are relatively small and it appears the older we get the slower they grow as well the mind has more control than what we give it credit for with a positive outlook many things can happen and you are proof of that.....
Best Wishes,
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To throw my 2 cents worth into the pot.
I'm glad I had my CK before ObamaCare because I suspect that at my age and the fact that AN's are suppose to be slow growers (which mine was not) I might not be able to get a procedure done.
Moving right along to the cost factor. My first follow up MRI after my CK is scheduled for September. The script I got for the MRI says "with out contrast" so I sent an email to the doctor's office through the patient portal stating that I understand that the MRI is much better if it's done with contrast. The doctor replied that with contrast takes longer, cost more, and isn't any more beneficial now that they know I have an AN. So there you go...
Karen
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I know what you are talking about with this obamacare crap. Seems they set an age limit as to if and how you will be treated. Had mine removed 4 years ago at age 56, cause it was next to the brain stem was told surgery was my only option as ck could fry the brainstem also. Now.............I'm told with possible regrowth all of a sudden ck or radiation would be ok even though it is again next to the brainstem. Funny, guess since I'm now 60, time to be put out to pasture, here come the death squads. Its now ok to fry my brain? If it does turn out to be a re-growth have made up my mind not to do anything and hope this idiot sitting in our countrys white house is gone after elections, of course thats assuming he doesnt have dead people, illegals and felons voting for him again!
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Its now ok to fry my brain?
#1. No form of AN radiation treatment "fries" the brain. I'd like to put a stop to this comment as it is far from accurate. Today's AN radiation treatments are highly targeted beams, maintain VERY high success rates in the treatments in AN, may cause less post-treatment issues then surgical procedures and certainly do not "fry" the brain. Enough discussion on this one. Very irked that any treating professional would note this.
#2. As we know this is a highly passionate discussion, if the political aspect of this discussion would like to continue, I highly recommend you all do so in the "AN Community" forum. Since this is the "Radiation/Radiosurgery" forum, would like to keep the discussion about CK offering in the UK on track. Should you all feel the need to further discuss UK/US political aspects of healthcare, I encourage one of you to start a thread in AN Community where you all can discuss freely, not as moderated (but still watched) where you can have fun with this discussion.
Thanks folks.
Phyl
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THANK YOU Phyl!!!
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When do you start to take the steroids for radiosurgery?
JW
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Did any of you guys/gals take the steroids starting the day before the GK/CK/FRS or the morning of the procedure? or after the procedure is over for a few days?
Is one way better than the other to reduce symptoms?
JW
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With regard to steroids I believe some centres give you steroids before hand and afterwards.
Some centres give you none at all.
Some give you steroids afterwards only, and others only if you have problems.
There is no consensus on this.
There is a debate as to whether taking steroids straight after radiosurgery changes the long term outcome for AN's. Where I went they did not prescribe steroids which is quite common in Europe.
I did take Prednisilone 5 months ago when my hearing diminished overnight.. My hearing did come back..
Was it the steroids??? Steroids for sudden hearing loss is commonly prescribed.
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With Paul on this one.
I was prescribed Decadron (I lovingly refer to it as Decacrap, due to side affects) immediately post-CK for a couple of weeks to keep potential edema/swelling in check. Like Paul, I did have to take steroids (Medrol Dosepak) months down the road when I started to have minor diminished hearing issues, which, post-steroids, did calm down. There is always the potential of tumor swelling post-radiation and steroids can be prescribed to help keep the swelling to a minimum. Short term side affects from steroids stink but the long term benefits (IMO) outweigh it. As Paul noted, not all treating locations/physicians prescribe it but they may. Each one has their own protocol. Not always ommon but not unusual either.
Hope this helps.
Phyl
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When do you start to take the steroids for radiosurgery?
JW
I never had to take any steroids with my GK, before or after treatment. Just a few advil now and then. They are not always needed.