I love Terry's work and I will pass on my kids to read his books. I wish you to write many more books, Terry!
My dad suffered from Alzheimer's for 8 years and he was 51 years old when was diagnosed. Dawn was right, my dad "died" on the day of diagnosys. He said that he doesn't want to die as the insane. Every time I've seen him I've realized gradually destruction of these domains - reading, writing, talking, walking. Only his smile when he sees me showed that he remembered me, his joyful dances when I played his favorite music and his funny faces showed me that he didn't lose his soul. The nature is amazing!
After the first 5 years Aricept wasn't efficient, so we had to buy stronger medicine. The doctors said that the pills are for relative's relief, because there is no cure.
The Health system in Bulgaria where I live doesn't assist in such cases. My mom had to apply with our NHS for a house health assistant and we dropped out of the classification because we've received over the minimum amount of money monthly and also we had property (our home) which means we are 'rich'. Does the Alzheimer's pick up only poor people?
I have been diagnosed with secondary breast cancer, now in my liver and lungs. i am 39 years old with a lovely husband and 2 liitle girls aged 9 and 6. I am absolutely appauled that I have paid my national insurance all my life and because I want to get the best medicine available so that I can be here for as long as possibe with my family that I am penalised for it.
The NHS are failing us all, they have brought this on themselves by providing a second class NHS system. It's fine in principal to have it free at the point of delivery that's great - but only if you are getting access to the drugs the rest of the world are receiving.
|I have started fundraising in the hope that co-payment will be agreed. However I don't think Scotland are going to go for it at the moment but hope that they do a U-turn in October if England and Wales bring it in.
All I have is hope at the moment, I will have the money to top up my NHS but if it doesn't change I will be die prematurely and leave my beautiful family sooner than i would like just because of the brick wall i find myself up against - I would not be able to afford to pay for all the treatment, which I would need if they throw me of the NHS.
I was so shocked to find out that the drug needed is not available on the NHS but not supprised.
30 Years ago I was perscribed Dalmane sleeping capsules and about 15 years later after becoming addicted to them the NHS decided to put this drug on Private perscription and I have to pay the full cost of a drug I don't even want.
Next year I will have been on them for 30 years and I'm coming up to 60 but I will be paying for them the rest of my life.
I blame my Doctors but they do not want to know and have never offered to help me get off this drug.
Recently another drug that I have been taking for 10 years was stopped on my repeat perscription, I rang the Doctor she was off that day, I went away for a week and then the Doctor was on holiday, in the end a different doctor came to see me and I was told I had been taken off the drug as I had High Blood pressure, he took my BP told me it was high and then said my BP would be taken and checked over the next 3 months and if it was still high I would have treatment for it.
This was in June and I have not seen anyone since.
I totally agree with mr. Pratchett. I am a big fan of his works and think it is aweful that such a fantastic mind will be damaged by a mere disease. But at least he has the money to be able to cope with it. Most people who have this disease cant do anything.
Mr Pratchett I have ED and I don't get Viagra I have to pay for the prescription and the medicine so it is not autoatically free. This affect my relationship and well being - the NHS has finite resources and we have to prioritise unless you can persuade the tax exiles to come back and put more money into the pot to pay for the medicines and care required.
I totally agree with Terry Pratchett's story and share his disgust at the unavailability of the alzheimer's drug Aricept. It is unacceptable and discrimination that any drug that may improve the quality of life should only be available to patience in Scotland. Yet another case of contempt towards the British taxpayer. What is the point in manufacturers developing these and other drugs if they not equally available to all NHS pataince. Everyone has the right to the best available treatment.
i work in a respite centre for people with alzheimers and 1 in 3 clients come in to us already on aricept . what needs to happen is that this drug is reviewed regular by gps or mental health outpatients as i find some clients benifit from aricept who are in the earley stages of alzheimers , but some clients who are in late stages it just seems like a waste of money and aricept should be stopped and let people in the community be given a chance to try this memory enhancing drug. note i do belive if someone is diagnosed with vascular dementia aricept wouldnt help
As a support worker for people with dementia I have seen the real difference these drugs can make to people who are very frightened and confused as to what is happening to them. At the very least they can make plans for theirs and their families future, and at the most they could carry on working and continue to be productive for a few more years, delaying the need for care.
I was intrigued to read the article by Terry Pratchett on the 17/08/2008 about the drug 'Aricept'. My mother is in the first stages of Alzheimer's and would love for her to try the drug as any help would be amazing. Can you let me know where the drug can be prescribed or a contact to Mr, Pratchett's specialist in Bath?
It is not just this , the govt(ie us taxpayers or migs whichever you prefer) find the money for all kinds of things that are not needed wars,refuggees homes for the same,food for prisonere as well as TV' video games billiards (i could go on) and the insane legal fee's for "human rights" where are these woth this terrible disease's human rights time to get rid of Gordon and his mob and let some other party with brains and simple economics run this country
As an HIV sufferer I get all my medical care for free for my condition. This is because it's a deadly disease. This I feel is correct and a morally sound decision. I take Atripla which costs the NHS around £500 a month. I understand and appreciate that this is a large amount.
Now lets look at Alzheimers. It also is a deadly disease - like HIV, you can't be cured. Again, like HIV, there are medicines out there that can slow the disease. These medicines, like Aricept, are much cheaper however. So why is the NHS and NICE not willing to pay for these treatments? If they are happy to pay for my HIV then they should pay for ALL deadly disease. I do understand that there are more Alzheimers sufferes than HIV but feel that this is unfair on all involved.
Though saying this there, has also been talk of making all those with HIV pay for there treatment and medication for there side effects too. This, like the treatment of those with Alzheimers, i find abhorrent.
How is it that the NHS has the funds to allow an obese single mother (who presumably doesn't work and deliberately became pregnant) to safely give birth to triplets that the rest of the country will continue to fund to adulthood, but does not have enough money for Alzheimer's drugs for people who have probably worked hard all their lives, paying their National Insurance and taxes? By my calculation this one birth would fund 220 years of these drugs for people that have no choices in their future.
My father suffered from alzheimers for 10 years.
It was so hard to see an intelligent and happy man turn into a very depressed and vacant person. It was only after 8 years we had him put into a home for his own safety. We were also told that this was part of a Mental Health problem.
The drugs he was given made him depressed, and paranoid and nobody seemed to care after all "he was in his 70's at the time". They would say things like This happens at his age. I Loved my Dad with all my heart and miss him dearly but i'm afraid that as soon as someone is diagnosed with Alzheimers the Doctors. Hospitals etc just give up on the patient and the caring family. To be honest my Dad "died" the day he was diagnosed.
My heart goes out to anybody with the disease and also their families for the slow loss of this person that they love.
The NHS is an instition huge area's of which are stuck in the 70's with working practices,limited management that leads or prepared to take responsability,every day i see money and resources wasted untill someone takes control and manages the NHS there will always be funding issues non medical areas see it at a bottomless pit of cash and spend it as they feel.
I agree totally. What NICE dont seem to understand is that if they let people have these drugs then they can continue at work. They will still pay taxes and NI contributions ie covering the cost of their treatment. Refusing treatment pushes the patient onto benefits far earlier, so the overall effect is a drain on the NHS. My husband missed out on Interferon because it took too long to diagnose MS. He had to retire at 53 (now 58) so the system lost all his tax and NI contributions. Had he had it, he may well have been able to continue at work till he was 65.
There is definitely no rhyme nor reason to some of the decisions made by NICE. I myself have worked in a mental health hospital and seen the benefits of these drugs. You have to wonder why Aricept and the like are now only allowed to be prescribed when it is too late.
I love Terry's work and I will pass on my kids to read his books. I wish you to write many more books, Terry!
My dad suffered from Alzheimer's for 8 years and he was 51 years old when was diagnosed. Dawn was right, my dad "died" on the day of diagnosys. He said that he doesn't want to die as the insane. Every time I've seen him I've realized gradually destruction of these domains - reading, writing, talking, walking. Only his smile when he sees me showed that he remembered me, his joyful dances when I played his favorite music and his funny faces showed me that he didn't lose his soul. The nature is amazing!
After the first 5 years Aricept wasn't efficient, so we had to buy stronger medicine. The doctors said that the pills are for relative's relief, because there is no cure.
The Health system in Bulgaria where I live doesn't assist in such cases. My mom had to apply with our NHS for a house health assistant and we dropped out of the classification because we've received over the minimum amount of money monthly and also we had property (our home) which means we are 'rich'. Does the Alzheimer's pick up only poor people?
I have been diagnosed with secondary breast cancer, now in my liver and lungs. i am 39 years old with a lovely husband and 2 liitle girls aged 9 and 6. I am absolutely appauled that I have paid my national insurance all my life and because I want to get the best medicine available so that I can be here for as long as possibe with my family that I am penalised for it.
The NHS are failing us all, they have brought this on themselves by providing a second class NHS system. It's fine in principal to have it free at the point of delivery that's great - but only if you are getting access to the drugs the rest of the world are receiving.
|I have started fundraising in the hope that co-payment will be agreed. However I don't think Scotland are going to go for it at the moment but hope that they do a U-turn in October if England and Wales bring it in.
All I have is hope at the moment, I will have the money to top up my NHS but if it doesn't change I will be die prematurely and leave my beautiful family sooner than i would like just because of the brick wall i find myself up against - I would not be able to afford to pay for all the treatment, which I would need if they throw me of the NHS.
Hi,
I have all Terry's books and love them.
I was so shocked to find out that the drug needed is not available on the NHS but not supprised.
30 Years ago I was perscribed Dalmane sleeping capsules and about 15 years later after becoming addicted to them the NHS decided to put this drug on Private perscription and I have to pay the full cost of a drug I don't even want.
Next year I will have been on them for 30 years and I'm coming up to 60 but I will be paying for them the rest of my life.
I blame my Doctors but they do not want to know and have never offered to help me get off this drug.
Recently another drug that I have been taking for 10 years was stopped on my repeat perscription, I rang the Doctor she was off that day, I went away for a week and then the Doctor was on holiday, in the end a different doctor came to see me and I was told I had been taken off the drug as I had High Blood pressure, he took my BP told me it was high and then said my BP would be taken and checked over the next 3 months and if it was still high I would have treatment for it.
This was in June and I have not seen anyone since.
So much for the NHS!!
I totally agree with mr. Pratchett. I am a big fan of his works and think it is aweful that such a fantastic mind will be damaged by a mere disease. But at least he has the money to be able to cope with it. Most people who have this disease cant do anything.
Mr Pratchett I have ED and I don't get Viagra I have to pay for the prescription and the medicine so it is not autoatically free. This affect my relationship and well being - the NHS has finite resources and we have to prioritise unless you can persuade the tax exiles to come back and put more money into the pot to pay for the medicines and care required.
I totally agree with Terry Pratchett's story and share his disgust at the unavailability of the alzheimer's drug Aricept. It is unacceptable and discrimination that any drug that may improve the quality of life should only be available to patience in Scotland. Yet another case of contempt towards the British taxpayer. What is the point in manufacturers developing these and other drugs if they not equally available to all NHS pataince. Everyone has the right to the best available treatment.
i work in a respite centre for people with alzheimers and 1 in 3 clients come in to us already on aricept . what needs to happen is that this drug is reviewed regular by gps or mental health outpatients as i find some clients benifit from aricept who are in the earley stages of alzheimers , but some clients who are in late stages it just seems like a waste of money and aricept should be stopped and let people in the community be given a chance to try this memory enhancing drug. note i do belive if someone is diagnosed with vascular dementia aricept wouldnt help
As a support worker for people with dementia I have seen the real difference these drugs can make to people who are very frightened and confused as to what is happening to them. At the very least they can make plans for theirs and their families future, and at the most they could carry on working and continue to be productive for a few more years, delaying the need for care.
As a GP I have seen many patients on aricept. I am not convinced that it makes much genuine difference to the quality of life of those who take it.
I think the money would be better spent providing good quality support and care for those affected and their families
I was intrigued to read the article by Terry Pratchett on the 17/08/2008 about the drug 'Aricept'. My mother is in the first stages of Alzheimer's and would love for her to try the drug as any help would be amazing. Can you let me know where the drug can be prescribed or a contact to Mr, Pratchett's specialist in Bath?
It is not just this , the govt(ie us taxpayers or migs whichever you prefer) find the money for all kinds of things that are not needed wars,refuggees homes for the same,food for prisonere as well as TV' video games billiards (i could go on) and the insane legal fee's for "human rights" where are these woth this terrible disease's human rights time to get rid of Gordon and his mob and let some other party with brains and simple economics run this country
As an HIV sufferer I get all my medical care for free for my condition. This is because it's a deadly disease. This I feel is correct and a morally sound decision. I take Atripla which costs the NHS around £500 a month. I understand and appreciate that this is a large amount.
Now lets look at Alzheimers. It also is a deadly disease - like HIV, you can't be cured. Again, like HIV, there are medicines out there that can slow the disease. These medicines, like Aricept, are much cheaper however. So why is the NHS and NICE not willing to pay for these treatments? If they are happy to pay for my HIV then they should pay for ALL deadly disease. I do understand that there are more Alzheimers sufferes than HIV but feel that this is unfair on all involved.
Though saying this there, has also been talk of making all those with HIV pay for there treatment and medication for there side effects too. This, like the treatment of those with Alzheimers, i find abhorrent.
How is it that the NHS has the funds to allow an obese single mother (who presumably doesn't work and deliberately became pregnant) to safely give birth to triplets that the rest of the country will continue to fund to adulthood, but does not have enough money for Alzheimer's drugs for people who have probably worked hard all their lives, paying their National Insurance and taxes? By my calculation this one birth would fund 220 years of these drugs for people that have no choices in their future.
My father suffered from alzheimers for 10 years.
It was so hard to see an intelligent and happy man turn into a very depressed and vacant person. It was only after 8 years we had him put into a home for his own safety. We were also told that this was part of a Mental Health problem.
The drugs he was given made him depressed, and paranoid and nobody seemed to care after all "he was in his 70's at the time". They would say things like This happens at his age. I Loved my Dad with all my heart and miss him dearly but i'm afraid that as soon as someone is diagnosed with Alzheimers the Doctors. Hospitals etc just give up on the patient and the caring family. To be honest my Dad "died" the day he was diagnosed.
My heart goes out to anybody with the disease and also their families for the slow loss of this person that they love.
The NHS is an instition huge area's of which are stuck in the 70's with working practices,limited management that leads or prepared to take responsability,every day i see money and resources wasted untill someone takes control and manages the NHS there will always be funding issues non medical areas see it at a bottomless pit of cash and spend it as they feel.
I agree totally. What NICE dont seem to understand is that if they let people have these drugs then they can continue at work. They will still pay taxes and NI contributions ie covering the cost of their treatment. Refusing treatment pushes the patient onto benefits far earlier, so the overall effect is a drain on the NHS. My husband missed out on Interferon because it took too long to diagnose MS. He had to retire at 53 (now 58) so the system lost all his tax and NI contributions. Had he had it, he may well have been able to continue at work till he was 65.
There is definitely no rhyme nor reason to some of the decisions made by NICE. I myself have worked in a mental health hospital and seen the benefits of these drugs. You have to wonder why Aricept and the like are now only allowed to be prescribed when it is too late.