Throat cancer... Practice manager stopping my drugs

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

 

 

  • Basically the Practice Manager has no legal right to make or amend a prescription. 
    I have a feeling that this practice is actually illegal, unless authorised by a licensed Doctor.

    I've just checked my local CCG guidance - nowhere in this 59 page document are Practice Managers even mentioned! It emphasises that only prescribers (usually Doctors but sometime Nurses and Allied Health Professionals can order items restricted to their area of clinical expertise). www.warringtonccg.nhs.uk/.../WCCG Repeat Prescribing and Ordering Guidance v1 0.pdf

  • Thanks Dave, my GP was great in the end,she told the practice manager that her clinical decision will stay on my repeat so all good! 

    I lost a friend from head and neck cancer this week, I'm really down as we met having surgery together. It was so aggressive poor luv, it's playing on my mind all the time whereas I'm so positive normally 

    Hope all is well.with you and Vatch  too

    by the way, it's Carol 

    , Kirk is my surname 

    take care Carol 

  • Hi Carol,

    I'm glad your GP sorted that out.

    It's always hard when someone you know dies of cancer, especially when you started the journey together or they started after you.

    It is inevitable that you start reflecting on this and start feeling negative. All you can do s try to make the best use of the time you have. Easier said than done with this hanging over you, I know!

    Best wishes

    Dave

  • Thanks, Dave your so right of course. I put all my efforts into my work with age U.K. now after being made redundant from a 28 year career with the local authority, I wasn't a good choice after cancer!

    I now help the over 50s with all sorts of  problems relating to health and money etc so feel I am still doing good and my experience really has helped others . 

    Spring is round the corner too so the garden gloves will soon be on!

    My very bst wishes to you 

    Carol 

  • Glad to see my initial post is helping others get what they need and deserve

    keep on fighting the fight folks

    vatch

  • Colgate Duraphat 5000 ppm can be bought over the counter at carethy.co.uk or post my meds or your meds to name a few. Between £13-£14