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Throat cancer... Practice manager stopping my drugs

Vatch
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hi all

I am 16 months out of Tomotherapy and chemotherapy for throat cancer

Although not quite back to my pre treatment self....I am getting there

However, as those of us who have had any sort of radio therapy around the head area, will know that for the rest of our lives, oral hygiene is of the utmost importance.

You see there is a risk that the blood vessels around the jaw could have been damaged and in an extreme case, an infection in the tooth, could lead to jaw necrosis and after surviving cancer I don't fancy going through that.

The radiation treatment knocks all the fluoride out of your teeth and therefore for the rest of my life I have to use Duraphat 5000. Normal toothpaste is far too hash and painful ... Believe me the wife and I once went away and I forgot my Duraphat 5000, so used a small amount of toothpaste and was in agony for two days.

I am sure it's the same with all of us, but I now brush after every meal, so I go through several of these small tubes of Duraphat a month.

On a recent collection of my medications, I have just been told that the practice manager has stopped my supply of Duraphat 5000 on the basis that it's not a pescribed product and can be bought over the counter.

If there is any benefits to having cancer ( and there are not a lot), then it's getting free medications for 5 years and having worked all my life and paid into the system, as I have got to use this toothpaste for the rest of my life, for now and at £14 per small tube ....feel I should be getting this free.

I have only just been told about this, so am trying to calm down before i offload both barrels to some none medical   bean counter, who has no idea what surviving cancer still involves.

I do not want to get disease elitist, but I have not eaten my way diabetes and those who have get their drugs free for the rest of their lives. I had no control over contracting cancer and only get my drugs free for 5 years ... Or so I thought.

I would be grateful for any thoughts on this

 

 

Parents
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    Hi Vatch

    I share the same problems as you having had radiotherapy to my neck and jaw and have Osteoradionecrosis (death of the bone in my jaw). Any infection in the jaw or losing a tooth can lead to serious problems. I too need to use Duraphat toothpaste it has very high flouride which helps prevent decay.

    Your practice manager is wrong this is A PRESCRIPTION ONLY item it CANNOT be bought over the counter. The practice is trying to save money on its drugs bill and can wriggle out of giving you a prescription as its for your teeth, which apparently is not their remit. You could of course complain to your surgery or NHS trust which oversees your surgery putting your case and asking them to reconsider.

    If this doesn't work and you are no longer under the hospital dentist you could ask your dentist for the prescription, if you have an NHS dentist the prescription will be free, and as we have cancer the toothpaste will be free too. I did pay for one tube 75g and it was over £11 and like you say it doesn't last very long. Hope this is of help. Kim

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  • Offline

    Hi Vatch

    I share the same problems as you having had radiotherapy to my neck and jaw and have Osteoradionecrosis (death of the bone in my jaw). Any infection in the jaw or losing a tooth can lead to serious problems. I too need to use Duraphat toothpaste it has very high flouride which helps prevent decay.

    Your practice manager is wrong this is A PRESCRIPTION ONLY item it CANNOT be bought over the counter. The practice is trying to save money on its drugs bill and can wriggle out of giving you a prescription as its for your teeth, which apparently is not their remit. You could of course complain to your surgery or NHS trust which oversees your surgery putting your case and asking them to reconsider.

    If this doesn't work and you are no longer under the hospital dentist you could ask your dentist for the prescription, if you have an NHS dentist the prescription will be free, and as we have cancer the toothpaste will be free too. I did pay for one tube 75g and it was over £11 and like you say it doesn't last very long. Hope this is of help. Kim

Children
  • Offline in reply to kimchoson

    Hi again

    I did give this some more thought, perhaps you could ask the ENT department at your hospital and or the dentistry department to write a letter to your doctor underlining just how important it is for you to be using Duraphat toothpaste. It would add great weight to your dispute with them. Alternatively you could change GP practice to one that would do the prescription. I did some checking around online and was astounded that the Duraphat 5000 is indeed £13+ for 51g a small tube. The one I use is Duraphat 2800 which is about £11 for 75g a slightly bigger tube. Compare that to my partners toothpaste, Tesco own brand, the same size is just 25p and the colgate version 100ml is £1.00. Normally you would use a pea sized lump of toothpaste but the recomendation for Duraphat is a 1cm to 2cm line so a tube doesnt last long when you are required to brush after every meal. I use sensodyne at lunch time cleaning but again that is not a cheap toothpaste. Hope you get this sorted Kim

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