Been through the process with 119 (very helpful lady etc. etc) and the final statement after 30 mins and lots of references to supervisors was:
I (and presumably all of us here) are entitled to the priority letter and coded PCR package BUT there is a shortage and there is a delay so we should just wait for it to arrive.
Meanwhile. make sure your GP and/or specialist is aware you have not received this package.
Helpful? Not really. We will still need to swim through this swamp on inefficiencies and short supplies if we contract the virus. Will it be too late for us? The nice lady was very concerned but could do nothing. Keep trying!
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Harvist
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That is what I had. Having not received the letter I contacted my CNS and she helpfully sent me a letter that they have been instructed to send out if they received enquiries. It states the steps to take in a clear manner. All good…..until I rang 119 for the priority PCR kit. This I did on Monday evening.The lady I spoke to was ok, she immediately knew what I was talking about because she had received her letter, her PCR kit, used it and possibly had her antivirals. She didn’t know what to do, told me I was on the list with my medical diagnosis…mm yes that’s why I’m ringing. Then long pauses whilst she communicated with her supervisor by typing and the replies. Upshot….wait for it to come, it will do, it’s been Christmas!! I immediately phoned Blood Cancer Uk to appraise them of the situation who were helpful and wrote to my CCG who have yet to reply. I’m holding my nerve and will just keep trying. My MP has also been written to as an urgent communication, he’s always slow to reply. I think he’s busy with other things 🤔.
Exactly what I have done withe same answers grr.. Mp said he would chase it up but heard nothing since.. Its a pot mess and I feel maybe a deliberate policy to cull a proportion of the elderly immunocompromised to save money
I have just spoken to the Manager of my surgery and I think I can identify where our problems are.
THE MANAGERS DON'T READ THE INFORMATION SENT TO THEM!
She was extremely pleasant and trying hard, said I am on the list but it is not the GP job to organise the magic letter and prioritised PCR test.
All true but she then read out one of the letters the practice received about who is eligible. She came to the line we were all discussing before Christmas about whether all of us are eligible, ie W&W patients might be excluded.
It was a flash of light for her and she wanted to make that the problem. I pointed out to her that many on this site and others had said that question was answered later on in the letter she was reading from.
She read on.
Another flash of light, "you are definitely eligible."
But still she couldn't see how she could help. She searched in her database and said again !Aha!" Your GP can add to your notes that you should definitely be on the list.
My GP will be doing so for me.
119 directs you to your GP and they get annoyed.
They direct you to your specialist who complains they are swamped.
Your GP manager reads the actual letter and realises they can help.
Swirls of confusion everywhere and 119 told me this morning I am on the list but supplies and distribution of prioirty PCR and golden letter are "hopelessly" behind schedule.
Me too but was told it would take more than a week to read my letter and then to allow further time add the appropriate code.. Bearing in mind that I'm pretty sure the computer run by NHSE to pick up those eligible to be considered for treatment was likely to have been done in December I'm not holding my breath sadly I don't think my Gp has got the hang of the coding system and has relied on an automated algorithm which categorised me as severely frail 4 years ago.. I am NOT severely frail in any way and had a 3 year fight to get that label removed
The practice manger sent it to me for reassurance that it wasn't their problem that I haven't received NHS letter of PCR kit. Unfortunately 119 refer me back to GP as do the specialist nurse. I've just emailed NHS England.... maybe that will work? Its very strange , I have a friend down the road with CLL at same surgery, same consultant, who got his letter and kit weeks ago!
That coding should have been put on our records when we were diagnosed.!! In my case 15 years ago.. GPS have had another more recent reminder to add coding(5th Jan) but sadly although this one does say we are eligible it tells them in a table to do nothing for us.. More confusion and another wordy letter that GPS probably only scan at best
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