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Thread: Medication and the PEG

  1. #1
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    Medication and the PEG

    Definitely a rant after a very challenging week. Peter discharged from hospital on Monday night after PEG op. was told that Gp would be instructed to prescribe liquid versions of P 's drugs. Had been told we would leave hospital with liquid forms but this was not the case. This morning I realised that drugs were running out and rang doctors' to ask about script for liquid drugs. doctors had not received the request from hospital. Tried to get support but both MND nurses were not working today. Managed to speak to new dietician. (Tell me the sense of changing your dietician at such a sensitive time as getting a PEG!)
    Went to GP with list of drugs that P would need over next few days and was happy to receive these in any form. Telephone call to local pharmacy and I went to pick up script. Chemist busy and, as Peter now loosing will to live, I agreed to pick up meds later. Now....... Wait for it! GP have been the backbone of support to date BUT... GP wanting to have all meds in tablets or capsule form, to crush and empty into the tube. Too costly to give me in liquid form. Burst into tears on chemist. MND Connect are supporting but need to hear all you thoughts about this. Could have ranted about builders or care agency as feel let down by them all. Cannot shoot myself because Peter needs me.

    Magic

  2. #2
    Forum Member Terry's Avatar
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    Sorry to hear that both you and Peter are still on that cliff face. Unfortunately it seams normal to have poor communication and broken promises from the hospital.
    It is stressful for us that have to plan every move and then finding what we have been told has changed. I don't think that all of my drugs are available in a liquid form and they do cost a lot more. But they are to make thing better and easier for us, I find that the hospice or my specialist are a lot more willing to prescribe the best medication.
    Life is a hell of a struggle for us and they keep making it harder, putting more hurdles up for us to try to jump. Do not be afraid to show your frustration, it is best to let it out. You never know someone might try to be helpful and it might get back to your doctor.
    Best wishes, love Terry
    Last edited by Terry; 5th July 2013 at 21:10. Reason: having Dinner

  3. #3
    Forum Member Bess's Avatar
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    Hello Magic, I can totally identify with your sense of frustration and anger. I just can't believe the poor levels of care and lack of communication from the health service people living with MND can be subject to. I feel we have to push at each step of the way to get what mum needs and what is best for her. Terrible to think that someone with this horrible disease would not be treated as a priority and that costs would come first.
    So frustrating. Sending you love and a common feeling of frustration, Bess xxxx

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    Hi Magic
    So sorry to here this, we had no trouble at all our doctor did it gradually for Mick as each one ran out and some of them are the same cost so I would look into further and ask your Pharmacist to cost both products for you, as they worked in partnership advising us as we changed over, some of his items have to be ordered special order like his daily antibiotics, so we have to order in advance but it has worked well for us. Some tablets are not meant to be crushed and sent down the peg as they do not work the same so I would definitely ask the pharmacist's advice on this and then maybe they could back you up with asking to be changed failing that, get your local MP involved, as it worked for us recently over getting equipment we needed as told them my husband was not getting the continuing health care promised by the PCT and just a phone call helped. xx Ang

  5. #5
    Forum Member Rory's Avatar
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    Hi Magic
    Our pharmacist is extremely helpful in proving liquid forms of drugs where possible. Irene still has to crush a few tablets tobdissolve and then pass through the RIG
    I think the bashing of the tablets helps releive the frustration!
    A bit of sparkling water does the trick if small blockage - too much and then you sound like Roy !

    Rory
    New Year's resolution -not to get MND again !

  6. #6
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    Oh magic, am appalled for you and Peter, haven't got much by way of practical advice except to second Terry's suggestion of the hospice as my own hospice consults with and makes informed 'suggestions' to my gp. They seem to carry some weight. Sending strengthening thoughts up into to the ether.

    Freda

  7. #7
    Forum Member john's Avatar
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    Hi Magic,
    Nothing that the NHS does surprises me. They have never heard of joined up thinking. How arrogant of a GP when told that people who are specialists are saying you need liquid forms of Pete's medication. They are just a greedy set of people beginning with b. How can their profit be more important than someone with this dreadful disease. They really should be ashamed of themselves.
    We think we are lucky having a "free" health system where others have to pay. At least when you pay you are looked on as an income stream so your welfare is important to them whereas here you are just a cost so they have no interest in your welfare. High time they were paid on results rather than rewarded for failure.
    My rant over!!!!!
    John

  8. #8
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    Thanks for support everyone. John, we are visiting the hospice for the first time on Wednesday and I had not thought of them supporting in this way. Had training on PEG last Monday and was informed that the more crushed tablets that went down, the more likely it is thy device will need replacing. Looked at information on time needed between each drug and they are all in excess of 2 minutes. Peter takes 8 different drugs so that is a lot of minutes. The feeds take 30 minutes each so our mornings and evenings are not going to be much fun.wonder what would happen if I refused to do it and insisted district nurses/carers came in to do it.
    Sadness is that all the angst I get from agencies and the complete absence of a 'case manager' detract com the quality of the time I spend with Peter. Being the weekend I cannot take any action until Monday. Will keep you posted.
    Magic

  9. #9
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    Sorry to hear of your very upsetting and frustrating experience Magic. I think I tend to agree with John, 'free' is never free, always comes with a cost, sadly you were at the receiving end of it. Best of luck to you, take good care of yourself and Peter, hope for better days ahead.

    CCx
    Last edited by ccinjersey; 6th July 2013 at 06:35.
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  10. #10
    Forum Member john's Avatar
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    Hi Magic,
    Thanks for the thanks but they should be directed at Terry. I contributed nothing but more ranting for you. On peg change I wouldn't worry about it. Irene's perished and needed replacing. The Nutricia nurse who was supporting peg feeding( no doubt because of their contract with the hospital giving them the right to supply overpriced liquid feed) could not come to replace so we went to James Cook hospital for a round trip journey of 90 miles and several hours. The old tube was simply pulled out and a new one inserted which was held in place by a small bladder which when filled with water stopped it coming out. I had to do subsequent replacements which took moments , out with the old, in with the new- that long. We were never offered liquid anything that wasn't already liquid and nobody said the drugs were what perished the original tube. I will file that under useless information in case it crops up in a pub quizz(lol) .
    Irene developed fungal nail disease and I asked for a prescription to deal with it as she didn't like the sight of it, was told the necessary medication was expensive and it wasn't seen as a medical necessity. I paid for it myself ,about 18 , only too pleased to know I had helped to keep the wolves from some miserable b....ards door! Another thing they declined to pay for was Optrex spray which relieved Irene's dry eyes - another 20 for me and another nail in the coffin of the NHs and its choice of GP .

    Was is it Michael Mates used to say "don't letter the b..gers get you down". It does become increasingly difficult. I echo his wise words - can't afford the Rolex to engrave it on - sorry.

    Take care of you and Pete and accept it is all a fight to help fill your day lol.

    John

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