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Good evening. I have had a very frustrating day. My husband has a retroperitoneal Sarcoma. Last year he had to have a Nephrostomy in one of his kidneys to help prolong his life. Since having the Nephrostomy no one involved in his care is taking responsibility for providing dressings and tubes to keep his tube secure. We have been pushed from pillar to post. Even the Urology Macmillan nurse can’t sort it out. Everyone I have spoken to has said it is the District nurses job to provide but they firmly say No. I am at my wits end now as we are running short. The GP can’t help nor the pharmacist.

has anyone any suggestions.


  • jacksprat_x1jacksprat_x1 Posts: 320 ✭✭✭✭



    I am sorry to hear of your plight. It’s terrible that none of the professionals that you have contacted can help.

    I was wondering do you have a contact at the hospital such as specialist nurse that you can contact? . Surely the hospital can help as they surely will have supplies until you get a regular supply organised. Why would your GP not be able to arrange it though? I would contact both the GP and the District Nurse and drill down exactly why they think that. It’s very frustrating for you. I hope that this gets resolved for you very soon.

    I have a colostomy bag and have to order supplies every month and my Colostomy Nurse has to send a request for supplies or changes to my Prescription to the GP then I request a monthly prescription which is delivered to my house by the supplier and it works well.

    This seems to be an issue of who is going to pay for them. I would think it is your GP’s budget like mine. You need the specialist to authorise the regular order so you can get a monthly prescription.

    I hope that this helps.

    Take care.

    Jackie 🙋‍♀️X

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