Duodopa - NHS says no


#1

Hi everyone,

I don’t know if you’ve seen the recent web story about how the NHS will commission Duodopa? If not it is here: http://www.parkinsons.org.uk/news/30-june-2014/nhs-england-says-no-routine-duodopa-commissioning

I would really love to hear your opinions on this news. You don’t need to have used Duodopa or even have considered it as a treatment option, it would still be great to hear your thoughts.

We need to let the NHS know what people with Parkinson’s think. Any help you could give us with this would be a step closer to ensuring everyone gets the treatment they need and deserve.

Thanks,

Leo


#2

Hi, Leo,

I am absolutely appalled at this news !!! It is already hard for us to have to face such an incurable disease, without having treatment options taken away from us !!

I suppose it is all to do with costs and yet, the NHS treats for free the rest of the world. We all know the cost of health tourism. We are talking about billions of pounds a year.

I do hope Parkinson's UK fights for our rights, as it is imperative Duodopa remains an option for all Parkinson's patients.

Regards


#3

Redpoppy may be overstating the figures a teensy bit - but of course I'd back the sentiment. What other disease relies mainly on 40-year-old drug technology? (I say without checking any facts.) Our treatment options are limited in scope, then limited again by the individual nature of the condition. For those who Duodopa helps there may be no other option. We need to keep available the very limited arsenal at our disposal.

Semele


#4

Thanks for letting me know your thoughts. I agree with what you say in terms of the limited arsenal. That is the point we are trying to make to the NHS.

Please keep the comments coming!


#5

It's a disgrace, particularly as this drug is only prescribed when all other options have failed. Believe me, I wouldn't want the inconvenience of having a pump attached to me and would only accept it as a last resort. And that's the point; the fact that it is a last resort is precisely why it should be made available for consultants to prescribe when they feel it is necessary. Damn these decision makers, if we need to make savings it should be on their salaries!


#6

As Innominate says, Duodopa is the last resort, a true lifeline. It has given Fedexlike, for example, a new lease of life, when everything else had failed. I hope he can add a comment on this issue himself.

By the way, Semele, mine was not an exaggeration, as the NHS actually wastes 2 billion pounds a year on health tourists.  And yet, it denies us a true life-saving option. Completely unacceptable !!!


#7

. . . or it's not £2bn, but just £70m, or 0.06% of the NHS budget: http://www.newstatesman.com/politics/2013/10/how-much-does-health-tourism-really-cost-nhs-its-not-%C2%A32bn The £2bn figure includes treating visitors (just like we figure on France's statistics if we're taken ill there) and temporary migrants who'll be paying tax.

Of course, everyone will have their own interpretation of last year's Coalition report, and anywhere legitimate savings can be made in budgets is clearly a good thing. I only get concerned about trying to use reasonable data because we have enough trouble putting our cases across as it is without giving lobby-ees the chance to duck our arguments by latching onto a side issue.

Which I've started to do. Sorry. I'll stop.

Best

Semele


#8

So where does that leave the pwp when all other treatments have stopped being effective ?DBS ? not everyone is suitable for dbs , no one can predict how there parkinsons will progress or how long the medication will be effective it is bad enough living with parkinsons without worrying there may be no medication options in the future what a absolute disgrace .

All the money this government gives away every year in foreign aid could be better spent on our health service


#9

Duadopa is a very expensive option. Perhaps as much as ukp 50,000 per person per year. There are 127,000 pwp in the uk. If they all got 5 years of treatment that would be 35 billion pounds.

DBS by comparison is much cheaper.

All health budgets are limited. Spending on one treatment excessively reduces the money available for others. More duadopa might mean fewer DBS. If DBS is more effective is that the right way to go?

I am not saying the NHS is correct, but the clinical bodies in  Scotland, Wales and England have all come to this conclusion carefully and thoughtfully and there are arguments for both sides.  

 


#10

Hi,

 

Its weighing the pro's and cons against each other. But it would be better as they allow it on a case by case review. I think from all PD patients only a handful need the treatment. I cannot imagine all(!) PD's need it. I go by fine on the current treatment package besides that i cant have the pump as i already have an insulin pump.


#11

Semele, 70 million pounds  wasted on health tourists is still an awful lot of money for the NHS to haemorrhage, when they could be better spent on people living and paying taxes here.

Turnip, as Maria rightly says, not all Parkinson's patients would be deemed suitable for Duodopa, but the option should be there if they are suitable and they need it. In fact, I don't think all patients are suitable for DBS either  anyway.

Of course Shelly is also right when she points out that we give far too much in foreign aid, when as a country, we have terrible debts and we borrow so much money.

However, it is not my intention to turn this into a political debate. All I want, is for Duodopa to be there for me and others if we ever need it.

Regards to all.


#12

Forgive me for wanting to change the subject but does anybody have taken or heard about herbal medication.  I am playing with the idea of taking gingko biloba, think I have spelt that right.  I have been reading up about it and wondered if it would be any good at all when I get a bit fuzzy headed and struggle getting the word to come forward in my filing system and sometimes when it does come it is entirely the wrong word. I think what I am looking for is my clear thinking capacity is getting furred up.  Does anyone else feel the same.

By the way I have enjoyed the posts on Duodopa.

Regards to all


#13

My dear late wife received about ukp 100,000 of Australian tax payer funded health treatment before she died. Personally as an Australian tax payer I find that totally disgusti.... no silly me. that was ok cause she was one of us white folk.

 

 

 


#14

Hi Turnip,

Thank you for your message. You are right that Duodopa is an expensive treatment, although some estimates have put it at £50,000 per patient per year, more recently it is believed the cost is £28,000.

Furthermore it is very important to understand that only a very small cohort of people with Parkinson's would be deemed appropriate for this treatment. Through using the current route to commission the drug we believe that only around 300 patients have ever been put forward for this treatment. It is of course a last option for people with Parkinson's and is only considered if DBS is not appropriate and all other treatment options have been exhausted.

The Individual Funding Request route for commissioning the drug is also taking up a lot of clinician time and leaves a person waiting months for a decision as to whether they can get the treatment (without any guarantees it will be approved). This too has a big cost to the NHS and the state as those people left without treatment options will rely on greater NHS care, disability benefits and their families and carers.

Most importantly, we believe that if a clinician deems a treatment as a person's best option that the person should be able to access this.

I hope this makes sense but please do let me know if you have any questions.

Thanks,

Leo


#15

 

         So the NHS are to withdraw funding, I understand they are  going to continue support for those of us who already rely on this system, well thanks for that. Who would have guessed that this decision would have been made when the CONDEMS took power, I expected this announcement much sooner and as there is only 300 or so lucky people have this very effective treatment, well 300 votes wont make a difference will it, I feel desperately sorry for  PD Patients who have exausted every other combination of drug to no effect, they will really struggle, if it wasnt for this admittedly rather bulky unweildy expensive ,( and thats expensive to fit and run)   piece of kit I would be 80 -95% paralysed all day, I would either have to be permanently in  Hospital or have careworkers attending me at home,at what cost.    I do not want his to become political  but its building quite a head of steam and heading that way hoow can any government or Health groupdeny this very very efficent device to someone whose only movement can be detected in their fingers  toes and blinking eyelids, unable to speak , thats in the most severe cases, and I was one of those severe cases, I should point out that when I was informed of the cost both of the fitment and running costs I felt very guilty that all that money was about to be diverted to giving me my life back, but then one of the great team taking care of me explained that all or almost all the capsules and tablets I was consuming, just to keep me ticking over would no longer be needed saving thousands of pounds per year,someone else brought my attention to the fact that I have worked all my life since 17yrs old, I have hardly  lost a days work since, only having to take early retirement due to PD, I wonder how much N I  was taken from my pay each week, and how many thousands of pounds in tax deducted, I dont feel guilt now, only anger that someone somewhere it this country is about to be denied Duodopa and thus a normal life, I will come back to this as I have more to add   but for now I cant help but notice on the news that the queen is launching the first of the giant Aircraft Carriers costing many billions, oh I understand the country mus be protected ,a 65000 ton carrier is just what you need when some crackpot is sitting  next to you on a bus or train wearing a semtex cardigan, only a tiny fraction of that huge amount of cash given to PD research would make such a difference,,fat chance.

                                         Regards to all             evila very angry Fed,  my Email is available


#16

Unfortunately it's hard to discuss anything concerning Parkinson's (and a great many other illnesses and disabilities), be it NHS treatment or benefits, without it becoming a political issue. The Coalition have virtually declared war on the long-term sick and disabled so they shouldn't be surprised when they receive vitriolic criticism from these groups in exchange.

Obviously the cost of treatments such as Duodopa have to be taken into account, but it's availability should be based upon clinical judgement rather than accounting policy. We are talking about a relatively small number of people who have no other option and denying them Duodopa could cost almost as much in additional care requirements as it saves.in treatment. This group of people won't go away, even if the Government might wish they would.


#17

hi,

 

That what my point is, patients that need it should be reviewed on a case to case and then money is spent wisely. But as the NHS is already accused of ageism it wouldnt surprise if the attitude was 'there too far gone anyway' which is a wrong approach. I had a similar battle with my insulin pump in ireland but fortunately they forgot to read the constitution which said that each citizen has the right to get the treat he or she needs. Maybe interesting for Parkinsons organisation to look for something similar in the consitution of the UK and take them to battle if necessary to the european court and make it a human right case.


#18

Stop moaning everyone!

Obviousy our priority is to get folk from Birmingham to London 10 minutes quicker, ( about  £70 billion) and making sure Will and Kate have a nice new flat with 3 kitchens,( about £ 4 million)

How can people expect health and mobility to be more important?

Did you miss this in the Tories manifesto?

GG

 

 


#19

Goldengirl, you forgot to mention the £3 billion aircraft carrier launched today - which hasn't got any aircraft! I think it should have been named HMS White Elephant. Oh, and there's a sister ship yet to come. Maybe the pair of them should be called HMS Laurel and HMS Hardy! In the meantime the sick and the poor face an ever-tightening financial squeeze as the gap between the haves and the have nots increases exponentially. But fear not, when we eventually get some aircraft to fly from these carriers we can continue to strut our influence around the world stage and pretend that we still have an Empire. Surely that's got to be worth any amount of money and the sacrifice of the well-being and dignity of the disabled is justified in the pursuit of such a noble cause?

 


#20

 

           But GG think what you can do with that 10 mns, (no not that), you could eat a bag of crisps read the latest help and support policy for bankers who I think you will agree are very hard done by,at the same time the last 2 seconds in fact there will be more than ample time to read the help and support allocated for the sick and the poor and homeless, the starving and those who have to choose between heating and eating who would have thought that in the 21st century this vast cavernous canyon would still exist between the mega rich and the, well poor really it simply should not be like this,the condems have done a strawroofer on us , a no such thing as community. a divide and conquer surely we must have seen it coming, surely, we were not blinded by the light reflecting from the shiny new lies, er policies  of our compassionate thoughtfull men of the people, well a very tiny amount of people , I never thought it could possibly happen again, but here we are, who was it that said Greed is good, try telling that to the man or woman crippled by PD when refused Ddopa on cost grounds, it sickens me.

                                       Fed