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Cookewitch
1st October 2013, 13:33
We've been to the hospital today and Dad is going to have is PEG fitted shortly. One question we forgot to ask when there was where do we get the liquids and feeds for the PEG and any idea on how much they will cost?

Thanks

john
1st October 2013, 15:06
Hi Cookewitch,
My wife was supplied with everything she needed on a monthly basis by an organisation called Nutricia. They even employed a nurse who did home visits to deal with instructions and support. The liquid feed was delivered every 4 weeks based on the dieticians calculation of needs. There was no costs so I supposed it was part of the free prescription process.
John

Alan Livett
1st October 2013, 19:09
Hi John. I am interested in your comment about 'free prescriptions'. I have been told by my doctor that mnd sufferers still have to pay!! Am I missing something? Regards Alan

Hormone
1st October 2013, 19:33
Hi, my father also has MND and has a peg feed. Like John said previously, my father also gets all his liquid feeds plus all other medication on prescription for free. I would definitely query your doctors statement.

J....

john
1st October 2013, 19:37
Hi Alan,
There was a declaration choice on the back of each prescription which I signed on Irene's behalf every time I collected her prescriptions saying that Irene was suffering from a terminal illness (I think) and we were never charged for any of her prescriptions. The chemist is a friend but I don't think he was doing any special favours. Some doctors prescribe their own drugs so you may never see a form but if you can get your hands on one I think you will find you are in a category that does not pay. It may be that the rules have changed since Irene's time.
I will try and research on the Internet. She was 57 at diagnosis and 59 when she died and so she wasn't exempted as a pensioner.

John
Looking on the NHs website it says you can have a medical exemption certificate if you cannot go out unaided because of a disability and your disability is permanent. It may well be dependant on your present state of health. I would chat to your GP or your neurologist if you think you would qualify on these grounds.

Cookewitch
1st October 2013, 21:03
Thanks, Dad is over 65 so prescriptions are free.....

angnmick
2nd October 2013, 18:48
A Dietician came out after Mick had his fitted an organised a company to bring out a peg feeder machine, who demonstrated it to me and let me have a go at setting it up on dummy runs until I was comfortable, they then arranged the first delivery of food and now they fax our doctor on a monthly basis, after ringing me to check how much stock have left letting me know when the next delivery will arrive hope that helps x Ang

Cookewitch
3rd October 2013, 08:59
That's really helpful, thanks Ang.....looks like it should all be quite straightforward....fingers crossed!

Terry
3rd October 2013, 21:53
Hi Alan;

I think that we do not automatically qualify for free proscriptions there is a side door on the form that allows us to have them eventually. I can't remember the details know but I can look into it if you can't find the information.
It is crazy that most cancer people get them free and maybe for five or so years after it has been stopped and yet us can't get it straight away without a fight and we have little hope of our decease being stopped.

Let us know how you get on, Terry

Terry
3rd October 2013, 22:06
Hi Alan;
I just had a look and the Medical Exemption Certificate states as one of the qualifying criteria:-
a continuing physical disability which means you cannot go out without the help of another person;
Take this to it’s extreme, I could then drive and walk unaided but I could not put my socks on. So this meant that I needed help of another person.
Regards Terry

Mal.
7th October 2013, 09:33
Cookewitch does your Dad normally get his prescriptions free? If so then the feeds for the PEG should also be free on prescription. As everyone has said arrangement for delivery of the feeds is all done for you. The company supplying your Dad's feeds will arrange for the prescription to be be filled with your GP and then arrange with your Dad (or Carer) a convenient delivery date for the feeds, syringes, gravity sets.
If your Dad is not getting free prescriptions, having a terminal illness entitles him to them. Pick up a NHS Prescription Charges Form from your chemist. Fill it out and send it off and a couple of weeks later your Dad should receive a Medical Exemption Card for free prescriptions.

Cookewitch
7th October 2013, 10:03
Thanks everyone. As Dad is 71 all his prescriptions are free. The dietician is due at 11am so I'm going to scoot out from work so I can be there and ask him any questions he has I assume he'll be involved in the process :)

gerald
5th November 2013, 20:54
Hi Cw? We use peg and like some of the replies get them via prescription delivered by nutrica they are daily contactable one them we noticed that in our case some of the drinks come back on her and she feels sickly particularly the chocolate fancy a woman not liking chocolate but you may like to check if the same happens and avoid ordering any dad doesn't care for. Regards gerald

Cookewitch
6th November 2013, 09:57
Thanks Gerald. We're all set up now with Nutricia but it's only one type of food for dad 'super fibre' something or other and no special drinks just water flushes. Did my first PEG turn today with the Nutricia nurse to watch over....next week I do it unsupervised.

Dad still eats a bit so he's on a fairly slow feed overnight. It did make him sick once but we reduced the overall feed down by 200ml and touch wood since then it's all be fine :)

So far I've been really impressed with Nutricia and our Nutricia nurse, Stella, is lovely and it's nice to know she's on hand if ever I do get stuck :)

Jangobie
6th November 2013, 12:50
Hi Cookiewitch, Ed had his peg fitted 2 weeks go and I was shown at the hospital how to use the feeding tube using a syringe only, Ed doesn't have the pump. He has 5 bottle of Fortisip a day 3 protein 2 fibre, he drinks some of them and some we put through the tube. As you say Nutricia have been v good checking stock levels of the drink. We have not needed the nurse to come in as it is very straightforward with the syringe.. Ed definitely seems to have a bit more energy. Hope everyone is having a good day. Love Diane

Cookewitch
6th November 2013, 13:11
I've only had the nurse out to show me how to do the weekly turning of the PEG tube.....I wouldn't have fancied doing it for the first time without her there!

Jangobie
6th November 2013, 14:26
Our Community Matron did that for us last week and I am getting to do it for the first time tomorrow but with a nurse here. Like you I would not fancy doing it alone for the first time. Take care. Diane

Cookewitch
6th November 2013, 14:46
It's not so bad now I've done it. I was only worried becuase the first time she showed me her blue gloves were obscuring it so I couldn't really see properly. So much easier actually doing it and getting a feel for it....our community nurse 'wasn't familiar with PEG's'....so thank goodness for the Nutricia nurse!

Jangobie
6th November 2013, 20:27
It is surprising that some of the nurses are not familiar with PEGs and indeed MND in general. I am glad all went well for you and Dad and hope mine does tomorrow. Take care. Diane

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