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Thread: Frustration and annoyance.

  1. #1
    Senior Member AmyS's Avatar
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    Frustration and annoyance.

    Just spent an hour up at the GPs surgery.

    Absolutely astounded - they keep messing up my mother's prescription for Creon (Enzymes). Asked them why? They don't want to prescribe it as it costs too much! WHAT?

    November 2014 she had parts of her stomach, pancreas, spleen and entire gall bladder along with several metres of intestine cut out. Her body cannot make enzymes to digest her food and also it has a quicker pathway from mouth to exit. Without Enzymes she cannot eat, digest, take nourishment and nutriments from any food. Without the enzymes food is in and out within 5/10 minutes. She's now malnourished

    Specialist dietician has advised the GP she needs 2/3 capsules with main meals - and 1/2 capsules per snack, one capsule per 3 Complan per day - she needs approximately 10 capsules per day. Doctor will only prescribe 100 tablets in a month - 10 day supply.

    I am disgusted by this, the GP is literally starving my mother - she's losing on average 5kg per month (11lb). HELP? I don't know what to do, GP refuses to prescribe any more than 100 capsules due to cost. In other words she can only eat every third day.

  2. #2
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    Absolutely disgusting. Can you not make a complaint /appeal to the practice manager as a first step? If you do not get a satisfactory outcome, then they should sign post you to the next step such as commissioning panel/ ombudsman? Get you MP involved?

    This of course all takes time.

    Best wish and good luck

  3. #3
    Senior Member nukecad's Avatar
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    It depends on what type of Creon it is.

    Some of the creon capsules cost the NHS only 13 to 28 pence each.
    But the "Creon Micro_G/R Gran 100mg" is £1.58 per tablet.

    2014 figures - page 33 of this
    http://www.hscic.gov.uk/catalogue/PU...g-2014-rep.pdf

    So if your mum is on the expensive ones thats £158.00 for a box of 100.
    GPs have their own budgets for prescribing these days so he will not like that.

    He may be guilty of failing his obligations under disability discrimination laws.

    Here is a link to a similar case at the Parliamentary and Health Service Ombudsman.
    http://www.ombudsman.org.uk/about-us...erable-patient

    and here is their report
    http://www.ombudsman.org.uk/__data/a..._by_Ms_B-2.pdf

    You may consider raising a complaint with them yourself.
    Last edited by nukecad; 29-05-15 at 16:15.
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  4. #4
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    Can you get a letter from the dietician to the GP? or can the hospital prescribe and you pick it up at their pharmacy?

  5. #5
    Senior Member AmyS's Avatar
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    Quote Originally Posted by nukecad View Post
    It depends on what type of Creon it is.

    Some of the creon capsules cost the NHS only 13 to 28 pence each.
    But the "Creon Micro_G/R Gran 100mg" is £1.58 per tablet.

    2014 figures - page 33 of this
    http://www.hscic.gov.uk/catalogue/PU...g-2014-rep.pdf

    So if your mum is on the expensive ones thats £158.00 for a box of 100.
    GPs have their own budgets for prescribing these days so he will not like that.

    He may be guilty of failing his obligations under disability discrimination laws.

    Here is a link to a similar case at the Parliamentary and Health Service Ombudsman.
    http://www.ombudsman.org.uk/about-us...erable-patient

    and here is their report
    http://www.ombudsman.org.uk/__data/a..._by_Ms_B-2.pdf

    You may consider raising a complaint with them yourself.
    Cheers Nukecad - "oh well" they can starve my mother but pay £600/£650 a month for my own medication which isn't life saving - just makes me more comfortable. I'd happily give up these tablets which cost £19 per day for one tablet twice a day.

    Have written two letters already to the Practice Manager and Senior Partner at the Surgery. They will not acknowledge or reply to the letters. Instead of handing them in - will post a further letter to them both - if I post it tomorrow it with 'guaranteed delivery for Monday'. See what happens then.

    So far, we've already spent a few hundred pound to see a private GP as the waiting time at our GPs surgery is 5 weeks and an emergency appointment is four weeks. Spent a further couple of hundred pound per private Consultant (3 consultants) @ £200 each at the moment already spent just under a £1000 in under a month.

    Have noted the ombudsman etc... Will see what happens from my 'next letter' then take this further.

  6. #6
    Senior Member Lighttouch's Avatar
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    The question you have to ask is why did they do the surgery in the first place if they aren't prepared to follow through with needed medication that works.

    I've a horrible suspicion that it relates to your mum's age. I wasn't allowed further surgery by 'fund managers' even though a clinician recommended that course of action.

    Cause a stink and fight the decision. Raise the issue on Twitter.

  7. #7
    Senior Member AmyS's Avatar
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    Quote Originally Posted by Lighttouch View Post
    The question you have to ask is why did they do the surgery in the first place if they aren't prepared to follow through with needed medication that works.

    I've a horrible suspicion that it relates to your mum's age. I wasn't allowed further surgery by 'fund managers' even though a clinician recommended that course of action.

    Cause a stink and fight the decision. Raise the issue on Twitter.
    If she can't eat - doh - she'll starve to death - in my opinion it's manslaughter or murder - and it was the NHS who recommended the darn surgery! After the surgery they advised the cancer tumour was actually dormant - in which case she'd have lived longer. At this rate she'll be dead in the next six months.

    I've spent the evening preparing letters - stating dates, findings, answers from GP etc. It has cost my mum and I a fortune in paying for private consultants and GPs now it looks like we'll have to return to the private GP to pay for private prescriptions except funds will just eventually run out.

  8. #8
    Senior Member Lighttouch's Avatar
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    Amy, I understand your frustration. While trying to identify funding for a wheelchair my enquiries led me to thinking of putting an individual funding application in to NHS England - I never got around to it.

    You can't apply to NHS England living in Wales but I did find this interesting website.

    You would need to help put a business case together as to why your mum should receive extra funding for her life saving drugs via an individual patient funding request and explain why your mum is 'an exceptional case'.
    http://www.cardiffandvaleuhb.wales.n...nding-requests

    An example that applying for funding and appealing is the way forward.
    http://www.walesonline.co.uk/news/wa...having-8000390

    Out of interest would she be eligible for the drugs if she moved over the border to England - just a thought!

  9. #9
    Senior Member AmyS's Avatar
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    Thank you Lighttouch, the links are very useful.

    Mum is too frail to make any kind of move - she's already disorientated with the memory loss, now malnourished a move of any kind would push her over the edge - there again maybe that's what her GP wants.

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