I contacted my local hospice, the Severn Hospice at Shrewsbury, yesterday afternoon. A nurse from their outreach team phoned back today and gave me a direct line to them. She asked for the name of my consultant and my GP practice and said that they normally waited to hear from them. She also confirmed that my GP practice had in place a Care Co-ordinator whose job it was to work with me and them to ensure that I had access to everything that I needed. I told her that all was well with me at present but I am glad that I have access to them from the different lines within the NHS. All is well so far though I am yet to see if the thickeners the Speech and Language Therapist, I saw last month, has been approved by the GP practice.
John
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pandyjohn
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John my husband had them provided by the SALT team at the hospital initially. Then the GP. I would contact your GP to remind him/her that you are waiting for a prescription. Sadly there is a lot of chasing up involved until they get their act together.
My wife picked up a prescription for me earlier today and whilst the thickeners were included the lady at the pharmacy said that there was no guarantee that they would be on the repeat request. Such is life!!!
Maybe they are just wanting to make sure what they've prescribed works for you. There are different types of thickeners - some starch based, some gum and they give slightly different textures, so one may suit you better than the other (starch tends to have a shorter texture than gum, maybe less slimey but settles out over time). I am sure once you are happy you have something that helps they will put it on repeat.
Well done John . It is good for you to know what support there is available. I cannot imagine that the GP would not put the thickener on a repeat prescription- 🤞!!!
Good news from the Hospice in getting direct line. I have asked our GP for referral but haven't heard anything, so think I will contact them directly. As for the thickener our Speech Therapist recommended, thankfully our GP issues on repeat prescriptions. Fingers crossed you get the same result. xx
Well done for contacting the hospice and getting the ball rolling to get all agencies on board. Once they are all on board and you are firmly in the system you will get regular contact with most agencies, they do all the chasing, not you. I'm sure the GP will approve the thickeners, never heard otherwise and I'm sure it would be posted on this forum if that were the case. Our GP never refused any meds recommended for Ben and they were chopped and changed constantly. It seems a battle to begin with but it was our experience that regular visits from many agencies were there to support us.
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