UK Colitis Petition

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Andy G
Regular Member


Date Joined Jan 2006
Total Posts : 89
   Posted 10/31/2007 2:15 PM (GMT -7)   
Hi,
 
We have launched a petition in the UK for free prescriptions. If you live in the UK please sign the petition at
 
 
So far we have gathered 140 signatures in 3 days - and the target is to get over 1,000 signatures by the 26th Jan.
I am posting updates to
 
 
 
Regards
 
~Andy Garside
 
 
4. No advertising or links to advertising or "Spam" is permited (including signatures)
  • Advertising or Spam is defined as posting a link for the purpose of selling, soliciting or promoting by someone that has ownership or other "vested interest" to the web site involved, including efforts to promote other online forums or web sites by web site owners. 
  • If you are a web site owner and have a link that fits into this category that you want to share, please submit it to our resource directory and we will review your submission. 
  • Posts and links about fundraising (including nonprofit fundraisers) are NOT permitted. 
  • Only links to personal home pages are allowed in signatures and member profiles. Links must be appropriate and abide by rules #1-4 or they will be removed. 
  • Links to helpful web sites (commercial or otherwise) are allowed when they are posted by someone without any "vested interest" AND whose purpose is NOT to solicit, advertise, promote, fundraise, etc.

Post Edited By Moderator (Dansky) : 10/31/2007 5:18:19 PM (GMT-6)


Dansky
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Date Joined Mar 2005
Total Posts : 2844
   Posted 10/31/2007 4:20 PM (GMT -7)   
Andy,

Discussed this before, you cannot advertise your website here, if you wish to do so, email Peter Waite, in the meantime I will happily sign the petition.

Take care.

Dave
Dansky Co-moderator UC forum
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Dansky
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Date Joined Mar 2005
Total Posts : 2844
   Posted 10/31/2007 4:25 PM (GMT -7)   
Andy,

I couldn't find the one you referred to however, for any UK residents or members of HM Forces here are some petitions regarding IBD and UK http://search.petitions.pm.gov.uk/kbroker/number10/petitions/search.lsim?ha=1157&sc=number10&qt=ibd
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
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Andy G
Regular Member


Date Joined Jan 2006
Total Posts : 89
   Posted 10/31/2007 6:20 PM (GMT -7)   

Hi

For some reason the links get scrambled on this site.

It is probably best to copy and paste it into your browser

http://petitions.pm.gov.uk/IBDPrescriptions/

P.S. note to the moderators -

I don't stop people placing links to other forums and blogs on the forums I run - as long as they are promoting the cause/relevent. In my book there's a big difference between spam and other people/sites working to achieve the same objectives. My rule is the users and cause come first - I have plenty of revenue from commercial sites to cover the hosting costs (and my own needs).

I also personally moderate the site - and respond to any medical queries - which takes a considerable amount of time.

~Andy Garside


Andy G
Regular Member


Date Joined Jan 2006
Total Posts : 89
   Posted 10/31/2007 6:29 PM (GMT -7)   

P.S.

If I was looking to SPAM - I wouldn't excatly be coming here - The BBC has been linking to us for the last 3 years -

http://www.bbc.co.uk/health/conditions/ulcerativecolitis1.shtml

We are also consulted by NICE (National Institute for clinical excellence) - The main policy making body of the NHS.

~Andy


Andy please see my reply below, cheers.

Post Edited By Moderator (Dansky) : 10/31/2007 11:53:24 PM (GMT-6)


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 10/31/2007 7:26 PM (GMT -7)   
I thought you had free healthcare in the UK?
James
Current Meds www.myspace.com/gardenerjames

Asacol 4 tabs 2x daily
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
Omega-3 once daily
Tenth Remicade infusion Early December


Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 10/31/2007 10:52 PM (GMT -7)   
Andy,

You got me wrong mate, I maybe didn't explain myself as good as possible, what I was referring to is the paragraph which states:

'Links to helpful web sites (commercial or otherwise) are allowed when they are posted by someone without any "vested interest" AND whose purpose is NOT to solicit, advertise, promote, fundraise, etc'.

I have no personal objection to you posting your page here, but all I'm asking is that you contact Peter Waite via the alert an admin tab and request permission from our founder Peter Waite, I don't think for a moment that he would object, he is a very approachable guy, but until then I'm sure you understand that I must continue to do what I believe to be right by ensuring the forum rules are not contravened, and clearly on your page entitled 'my web pages' that is a page of links to other websites and therefore you have a vested interest.

As I said Peter Waite is very approachable but until you have received permission from him please refrain from posting the link to your site in your signature.

For what it's worth I have your website saved in my favourites and I consider it to be a good informative site.

Take care.

Dave
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
Sulfasalazine
Azathioprine
Prednisolone
Pariet
Citalopram Hydrobromide
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Clackerooney
Regular Member


Date Joined Apr 2007
Total Posts : 45
   Posted 11/1/2007 2:06 AM (GMT -7)   
Hi James,

We do have free healthcare in that operations, hospital stays, consultations etc.. are all free.
If you have to go into hospital for medication, such as IV infliximab (remicade) or cyclosporin then that is also free.

The only thing you pay for is prescription medication and then you only pay a small part of the fee and only if you can afford it.

I think the standard fee is about £6.50 a month per item on your prescription. That's the same whether it's 180 asacol tablets or 250 prednisolone or whatever.
You have the option of paying the £6.50 per item per month or paying £98 up front and getting a years worth of prescriptions free, there's no limit on the amount you can get for that £98 (roughly $200)

I will not be signing this petition.

I think the $200 for an entire year worth of medication is very good value. I take a lot of meds each month such as pentasa, asacol, prednisolone, azathiropine etc.. and can't argue with the $200 for a years supply.

And if you are out of work, a student, on benefits, etc.. you don't have to pay a penny anyway. I think this current system is fair.

Hak
Regular Member


Date Joined Feb 2007
Total Posts : 41
   Posted 11/1/2007 2:15 PM (GMT -7)   
I totally disagree with you on this one mate, I work full time, and having to pay 6 pound for asacol then 6 pound for prdenesolne and 6 pound for calcium tablets etc etc, thats £21 quid a month, about £250 a year jst for me to not suffer pain? I just think its completly wrong
Clackerooney said...
Hi James,

We do have free healthcare in that operations, hospital stays, consultations etc.. are all free.
If you have to go into hospital for medication, such as IV infliximab (remicade) or cyclosporin then that is also free.

The only thing you pay for is prescription medication and then you only pay a small part of the fee and only if you can afford it.

I think the standard fee is about £6.50 a month per item on your prescription. That's the same whether it's 180 asacol tablets or 250 prednisolone or whatever.
You have the option of paying the £6.50 per item per month or paying £98 up front and getting a years worth of prescriptions free, there's no limit on the amount you can get for that £98 (roughly $200)

I will not be signing this petition.

I think the $200 for an entire year worth of medication is very good value. I take a lot of meds each month such as pentasa, asacol, prednisolone, azathiropine etc.. and can't argue with the $200 for a years supply.

And if you are out of work, a student, on benefits, etc.. you don't have to pay a penny anyway. I think this current system is fair.

Andy G
Regular Member


Date Joined Jan 2006
Total Posts : 89
   Posted 11/1/2007 2:31 PM (GMT -7)   

Hi,

Yes - the £98 per year pails into insignificance compared to the £800 a year I pay for private health insurance. On the other hand for people on low income to find £98 all in one go is quite hard. If they pay by the item then they have to pay about £25 per month.

It's about equivalent to going to casualty and them saying you have a broken leg. If they then gave you a piece of paper and told you to take it somewhere and pay £100 to get your leg put in plaster would that not be equally fair.

If health care is to be free at the point of use then why should someone whos illness is treated using medications have to pay - but those treated by surgery, nursing etc not ?

Also why should someone have to pay more just because there is not a single drug that treats their illness. That is entirely unfair. What you pay shouldn't change just because a single formulation doesn't contain all the medication you require.

The current prescription charge system is a legacy of the Thatcher years during which prescription charges were raised 10 fold in real terms. No-one would object to a token charge like £1 per item. When it comes to £28  for 4 items its a different matter.

Then there is the cost argument. People skipping medication and ending up in hospital costs the NHS millions a year (£300 a night - plus £8,000 to £15,000 for surgery). Every extra GP visit costs about £30.

Finally - this is not charity. We pay into the NHS - so should expect a service back. Roughly £7,000 a year of the tax I pay goes into health service. I would expect to getty pretty comprehensive treatment for that amount in the private sector.

Regards

~Andy


Clackerooney
Regular Member


Date Joined Apr 2007
Total Posts : 45
   Posted 11/1/2007 3:11 PM (GMT -7)   
hak said...
I totally disagree with you on this one mate, I work full time, and having to pay 6 pound for asacol then 6 pound for prdenesolne and 6 pound for calcium tablets etc etc, thats £21 quid a month, about £250 a year jst for me to not suffer pain? I just think its completly wrong


I think you misread my post.

In the UK the most you ever need to pay is £98 a year. You don't have to pay for each item individually.

What you do is buy an NHS pre-pay card for £98 and that gets you all your prescriptions for a year. You can pay in 10 installments if that's easier.

During the summer with UC and hayfever I had 10 items on my repeat prescription and I got this great big bag of medication every month for about £8.

I really don't see how this is "completely wrong". We'll have to agree to disagree.

*I edited this as I just learnt how to properly quote people!

Post Edited (Clackerooney) : 11/1/2007 4:33:02 PM (GMT-6)


Clackerooney
Regular Member


Date Joined Apr 2007
Total Posts : 45
   Posted 11/1/2007 3:30 PM (GMT -7)   
Andy G said...
Hi,

Yes - the £98 per year pails into insignificance compared to the £800 a year I pay for private health insurance. On the other hand for people on low income to find £98 all in one go is quite hard. If they pay by the item then they have to pay about £25 per month.


Simply not true. People on low income get free prescriptions and you can pay the £98 in 10 installments of less the £10 each if you chose. Or you can spend £26 and buy a 3 month card. There is never any need to spend £25 a month.

Andy G said...

Also why should someone have to pay more just because there is not a single drug that treats their illness. That is entirely unfair. What you pay shouldn't change just because a single formulation doesn't contain all the medication you require.


People don't pay more. It's £98 a year (a whopping £8 a month!) no matter how many different drugs and dosages are on your prescription.

Andy G said...

Finally - this is not charity. We pay into the NHS - so should expect a service back. Roughly £7,000 a year of the tax I pay goes into health service. I would expect to getty pretty comprehensive treatment for that amount in the private sector.

Regards

~Andy


I realise it's not charity but your £7000 isn't just for you. It's also for all those who can't afford to pay, i.e people on low income, children, students, don't have job, on benefits etc.. their medication is free because people like you and I pay the taxes. I'm happy with that.

And if you can afford to pay then I still believe that £98 a year is a very reasonable price.

Andy G
Regular Member


Date Joined Jan 2006
Total Posts : 89
   Posted 11/1/2007 6:01 PM (GMT -7)   
Hi,

1) I'm sorry - but people on low income don't get free prescriptions - only those on income support. For example someone earning the national minimum wage and working 37 hours a week isn't eligible (by quite a long way). They would only get free prescriptions if they had a partner and at least one child to support from their £150 per week of take home pay. That's why you get whole families living in a one room bedsit.

2) Again no clue. People on low income can't pay by direct debit. Most of them have basic bank accounts. These don't allow direct debits !! This total lack of attention to detail causes many people great hardship.

3) The majority of people with colitis pay for indidual prescriptions. Most people don't even want to think that they're going to be on medication for the rest of their lives. Lets face it who wants to live with a 10-50 fold increase in cancer risk.

4) "I realise it's not charity but your £7000 isn't just for you. It's also for all those who can't afford to pay, i.e people on low income, children, students, don't have job, on benefits etc.. their medication is free because people like you and I pay the taxes. I'm happy with that."

- Again you just don't get it - people on low income don't get free prescriptions. I could pay for a pre-payment certificate from less than an hours pay. I pay £600 pounds a year just for web site hosting for the UK colitis site.
I spent 15 years working for free in CABs with people who are robbing peter to pay paul. If you can't afford your kids school dinners then it get difficult to justify colitis medication for yourself. When it comes to Christmas - and it's a case of buy your child a present - or use the money for yourself for medication then it's a heart breaker. This isn't a soap opera !!

Also many people eligeable for free presciptions don't claim them because of the stigma attached. The vast majority of means tested benefits go unclaimed.

Once again - if treatment is free at the point of use/need then it should be free. If it's not then I don't want to take part. I would much rather donate to a fund that supports those that need help - and leave people like yourself to fend for themselves. That would leave both people on low incomes and myself far better off. You on the other hand would be paying about £150 per month for your medication - and another £2,000 a year to see a GP or consultant. If you got admitted to hospital you would be looking at another few thousand pounds before they let you through the door. No money - then no treatment - the same dilema as those on low income suffer.

What's probably most sad is that the people most affected don't have any oportunity to answer back in a forum like this. They don't have computers, certainly can't pay 15 pounds a month for broadband - and don't want to pay £1 an hour down the local library.

~Andy

Post Edited (Andy G) : 11/1/2007 7:08:11 PM (GMT-6)


Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 11/1/2007 10:29 PM (GMT -7)   
Andy,

I'm with you there, before I joined the Army I was earning £10.000 a year, I still know people earning that, I used to allow myself £3 a day spending money, I don't drink nor smoke, I would not go to the doctors unless I had no choice because the fear of straining my budget kept me away. As for spending £98 on meds, seriously it was difficult justifying having £21 a week 'spending money' at that time I was a driver and fortunately had free transport, but I knew people much worse off than me, I was fortunate to have good health but I could imagine how difficult it must have been off for anyone who wasn't fortunate enough to have good health, I know £8 a month might not sound a lot of money but to this day I have hard working tax paying friends who would struggle to pay that.

Take care.

Dave
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
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Azathioprine
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nahhan12
New Member


Date Joined Oct 2007
Total Posts : 8
   Posted 11/1/2007 10:54 PM (GMT -7)   
could you guys be any more selfish? OH NO you have to pay 20 $ a month. There's people out there that can't afford treatment or medications and so they SUFFER and DIE. You guys are paying however much a month because your government knows you can afford it due to your income. Over in America where we aren't fortunate enough to have a working health care system, it's pay all you have or don't get treatment at all. Especially if you're poor. So complain all you want about 6 pounds for a month's prescription. You have no sympathy from me. It'd be like me complaining to someone in a village in Haiti that bottled water should be free just like our public water from a water fountain is free. There's less fortunate people out there! BE GRATEFUL FOR WHAT IS GIVEN TO YOU!
_______
age 21, female
Anchorage, AK
diagnosed UC-pancolitis March 2005 (age 18)
Asacol 3 x 400mg per day
no food allergies
no known genetically related anti-bodies


Clackerooney
Regular Member


Date Joined Apr 2007
Total Posts : 45
   Posted 11/2/2007 2:26 AM (GMT -7)   
Andy G said...
Hi,

1) I'm sorry - but people on low income don't get free prescriptions - only those on income support. For example someone earning the national minimum wage and working 37 hours a week isn't eligible (by quite a long way). They would only get free prescriptions if they had a partner and at least one child to support from their £150 per week of take home pay. That's why you get whole families living in a one room bedsit.


Wrong. If you are on a low income and also have less the £16,000 in savings then you get an HC2 certificate.
This HC2 certificate means you do not have to pay for prescriptions. Google it.

Andy G said...

2) Again no clue. People on low income can't pay by direct debit. Most of them have basic bank accounts. These don't allow direct debits !! This total lack of attention to detail causes many people great hardship.


That is why there are several options to pay. One of them is direct debit. Another is £26 that gets you a three month card. (which you can squeeze four prescriptions into). And if you don't qualify for the HC2 and can't afford the £26 / £98 or whatever there are still options available to help with prescription costs.

Andy G said...

3) The majority of people with colitis pay for indidual prescriptions. Most people don't even want to think that they're going to be on medication for the rest of their lives. Lets face it who wants to live with a 10-50 fold increase in cancer risk.


If they're paying for individual prescriptions then they're throwing money away as I've already explained.

For what it's worth my work pay for me & my immediate family to have full private health care so for the most part I don't need to use the NHS. I'm still happy paying a lot of money towards it for those that need it.

Good luck with finding the 1,000 signatures for your petition.

If you succeed I would feel a little guilty about getting free medication when others have to pay but I'll live.

*I edited this cutting out some lines - I tend to waffle on a bit!

Post Edited (Clackerooney) : 11/2/2007 7:42:45 AM (GMT-6)


Andy G
Regular Member


Date Joined Jan 2006
Total Posts : 89
   Posted 11/2/2007 8:07 AM (GMT -7)   
Andy G said...
Hi,

1) I'm sorry - but people on low income don't get free prescriptions - only those on income support. For example someone earning the national minimum wage and working 37 hours a week isn't eligible (by quite a long way). They would only get free prescriptions if they had a partner and at least one child to support from their £150 per week of take home pay. That's why you get whole families living in a one room bedsit.
.
Clackeroony said...
Wrong. If you are on a low income and also have less the £16,000 in savings then you get an HC2 certificate. This HC2 certificate means you do not have to pay for prescriptions. Google it
- Sorry look at the terms of HC2 and HC3. HC2 only applies if your income is less than £3 pounds more than your assessed requirements. For a single person their assessed requirements are about £36 per week plus rent (capped at about £70 per week in most areas).
The governments definition of low income is far lower than most people would consider. Almost nobody falls within the definition now unless they are working short weeks - or have dependants.
 
Regards
 
~Andy

Post Edited By Moderator (Dansky) : 11/3/2007 12:06:05 AM (GMT-6)


Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 11/2/2007 3:06 PM (GMT -7)   
Excuse me if I seem abrupt but the title of this thread is UK colitis petition.

Julee and Nahhan, nobody asked for your sympathy you decided to post in a thread discussing the UK health system, the purpose of this forum is to offer personal mutual support, the subject was raised requesting assistance from UK citizens who would be eligible to sign a petition, for the benefit of Ulcerative Colitis sufferers in the UK.

I fully understand the difficulties USA citizens face with obtaining and affording health insurance but that is totally irrelevant to the subject of this thread.

I appreciate you are both new members to this wonderful community but I must advise you to read and comply with the forum rules in particular rule No 17. No irrelevant or off-topic posts. Posts which are not relevant to the forum topic may be deleted at the moderator's discretion. I have chosen not to delete at this time however would appreciate your future co-operation.

Dave
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
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Andy G
Regular Member


Date Joined Jan 2006
Total Posts : 89
   Posted 11/2/2007 6:00 PM (GMT -7)   
Hi,
 
For those of you who may think that I am only looking after UK (or my own) interests that is not the case. My innitial feeling when I set up my own site was that I shouldn't answer medical questions for fear of being sued. I then reaslised that there are people in the US and many other countries who have no access to medical advice. There are also people in the UK that get only poor/innadequate advice. I have since then answered any requests/posts where it is clear people need advice.
 
In the UK we have a principle that we all pay for health care and it is free at the point of use. It is therefore only right that people with colitis should get the treatment they need.
 
In the US it seems to be a case of everyone for themselves. While I wholly sympathise with the predicament this leaves people in - I'm afraid there is little I can do to help. On the other hand I can help make things better for those in the UK - so would ask that those eligeable to sign a UK petition do so.
 
It's not a case of we're all righ jack - but of trying to do the best we can for people who suffer from colitis.
 
Regards
 
~Andy

Post Edited By Moderator (Dansky) : 11/3/2007 12:06:21 AM (GMT-6)


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 11/4/2007 8:50 AM (GMT -7)   
Hi,

My Mother gets free prescription medicines because she has got thyroid disease which gets an exemption certificate in the UK.

I think Ulcerative Colitis should also be in the same category as it could be just as bad as thyroid diseases.

G

barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 464
   Posted 11/6/2007 4:16 AM (GMT -7)   
Hi Andy
 
I'm glad you have taken the time and effort to set up this petiton.  Its very commendable.
 
I have signed it and have asked all my friends and colleagues to do the same.  Lets hope we get free prescriptions..
 
reason for edit:
KSU, please refer back to what Dansky said about revelancy to the subject of the initial post.  Thank you
 
 

Post Edited By Moderator (Red_34) : 11/6/2007 6:01:11 AM (GMT-7)


Joz
Regular Member


Date Joined Jun 2005
Total Posts : 85
   Posted 11/7/2007 4:56 PM (GMT -7)   
I will sign the petition as I think we, in the UK, should receive free prescriptions for this illness. There are many conditions here that prescriptions are free for, when the illness is 'life-threatening' - don't quote me, I'm not sure of the exact words... well, what exactly would happen to us if we didn't take any medication?

I am very fortunate to live in Wales, where from the 1st April this year ALL prescriptions are free, for EVERYONE.. I think it should be the same for the whole of the UK.
27 yr old female
Diagnosed Feb 2005 with pancolitis
Asacol: 2x3 daily, 50mg Imuran (since March 2006-in remission)
Multivitamin, SCD yoghurt
 

 

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