Your time is cheap

Jasmine's latest prescription delivery

As a parent of a chronically sick child, the message I get everyday is that my time is cheap and I have nothing better to do than either wait around for people who are supposed to make my life easier or I have all day to chase them up when they don’t do their job.

This has happened several times with the community nurses who expected us to sit in ALL DAY and wait for them. It always happens with Fresenius the rubbish food pump people who can’t even deliver giving sets, all the time with our local Primary Care Trust (PCT), and this week it even happened with the Baxter Dialysis people who couldn’t manage in the snow.

Baxter send me a text the day before our delivery is supposed to come to give us a time slot. On Thursday I didn’t get one. I rang them up first thing Friday morning and was told that our delivery would arrive in the afternoon. After much wrangling I managed to get the information that our slot was 11am-2pm, but it would be later especially since we were 6th in the delivery round. Ok fine. We got another phone call at 12noon to say that it wouldn’t be coming, it might come on Saturday if we were lucky – no times at all and that I was unreasonable to expect one, especially as we weren’t an emergency case (I don’t know who is if we aren’t). When I tried to explain that it was very stressful not to know, the woman who was sitting in her call centre told me that she understood EXACTLY how I felt. So, this silly woman with her silly sing song-voice who interrupts you everytime you try to say something knows exactly how I, a pregnant hormonal mother of a chronically sick child, feels. Well she is obviously wasted in the call centre and she should be putting her empathetic talents to better use.

Later we got another phone call to say that the delivery would come on Monday but we would get a phone call from the call centre over the weekend. Ok! So I got out of bed this morning and rang them up to get an ansaphone message telling us that they are closed until Monday so tough luck.

So I was trying not to stress about it, especially as we are due at the hospital 9am Monday morning for a day of hospitals – scans for me and then GOSH – so who knows where this delivery would end up. At noon I was chatting to my mum on the phone (poor woman has to listen to all my woes). When I put the phone down I had a voicemail, and it was the Baxter delivery man, who had been outside 10 minutes earlier (our doorbell intercom is stupidly connected to the phone). When we got downstairs the concierge had already sent him away along with our month’s supply of dialysis bags/dressings/swabs/everything because when the concierge rang our phone/doorbell intercom to ascertain our whereabouts he got an engaged tone, demonstrating that we were in the flat.

After some frantic phoning round (us, not the concierge and not to Baxter who are SHUT even though they know their deliveries are all over the place because of the snow) the Baxter man rang us back and finally came back with the delivery. So, all’s well that end’s well.

Really though, my irritation with how people treat us started at the beginning of the week (if we don’t mention the relatives) when the PCT sent Jasmine a letter to invite her to an open day about food pumps and NG tubes because they don’t know whether to renew Fresenius’s contract with the NHS – even though they sent us a badly designed questionnaire before Christmas on the same subject. Now, I don’t know that many people who wear NG tubes but that is probably because if they need to wear an NG tube then they are too ill to feed themselves and if they are too ill to feed themselves they will be too ill to go out and meet people and go to stupid open days organised by the morons who run the PCT. But then that is just my opinion. And as Jasmine’s carer obviously I have ALL DAY when I am not waiting in for community nurses and deliveries by the concierge’s desk in case he sends everyone away, to go to their stupid open days to tell the PCT how to do their jobs. I would only get to one of their open days however, if I turned private detective and tracked down the incomplete addresses of the random health centres (which seem to be miles from where we live) they included in their inaccurately addressed, grammatically incorrect letter to Jasmine, who can’t, by the way, yet READ.

The next day, Neil went to the GP to pick up our prescription which we had put in 48 hours earlier. They had lost it for the second time this month. (We keep needing to go to the doctors because the dieticians are so hopeless they can’t calculate that a 200gs tub of maxijul only lasts us two days so we need more than four a month – I am beginning to suspect you don’t need much in the way of social skills nor ability to be a dietician. They have software to tell them what to do but unfortunately they won’t give us a copy of it, and it doesn’t include instruction on social pleasantries.) Could we come back the following day? I rang them 9am the following morning to be told that I needed to ring back Friday. I said no and that I was on my way there. When I got there they had created a new prescription which missed off two of things that we absolutely needed and they had already dropped it to the chemist who then needed to order the stuff in. Stuff arriving at the chemist is variable depending on the delivery people. So we plan two weeks in advance and even then sometimes we have to run down to Great Ormond St to get emergency supplies. So when the receptionist at the doctors suggested I should plan in advance, say a week, before I put my perscription in, I again was amazed at how many talented but totally wasted people there are out there who should be running the country instead of squandering their gifts as they do.

Anyway, our lovely chemist got on the case with our GP and the helpful planning lady and they have doubled all our doses and got us some BIG tubs of maxijul (as you can see from the pic) and now we shouldn’t have to go back for a month or so. Hallelujah! So if our lovely chemist could just come and live with us and sort out the rest of the healthcare suppliers and services and the dieticians whom we need to interact with and train our concierge not to send our deliveries away, then we would be off our heads with joy! She is great and we love her, especially next week when she will phone us to tell us that the calcium acetate has arrived (and the rest of the vitapro).

One Response to “Your time is cheap”

  1. Barbara Seacombe says:

    I must say I feel lucky to live in Somerset, with all the aggro you have to go through, it seems even I would be stressed.
    And as for the concierge, he needs talking too, you were already in the flat awaiting the delivery,oh dear.
    Good job Jasmine has special lovely parents.
    Have you had your chocolates yet?
    Love to you all
    Barbara xxx

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