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Author Topic: Reece goes away for Christmas. Again.  (Read 400261 times)
Laxie
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« Reply #1125 on: October 12, 2009, 01:56:26 PM »

More than happy to help.  This whole situation has become unforgivable.  Would even get on a plane over to you if I thought it would do any good.  Just give a shout and I'll help in whatever way you like/need and I'm sure many others will do the same.
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« Reply #1126 on: October 12, 2009, 02:05:47 PM »

The door that needed knocking on was P A L S, which I have done today. Basically there is no other way, no where to go but to the GP who like I said has to request referral. I am just looking on the net to see if we can contact Mr Puntis direct, unfortunately, Margaret, who is Reece's local nurse and gets things rolling for us is also on holiday or she would have made some calls today I am sure. I am just waiting on Stacey calling me back as the GP's were on lunch when she rang and so could not speak to anyone. I told PALS this morning how much of a dilemma we are in but she basically said this is the only way and she understands that we have had to wait already but will still have to wait.
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« Reply #1127 on: October 12, 2009, 02:29:01 PM »

The door that needed knocking on was P A L S, which I have done today. Basically there is no other way, no where to go but to the GP who like I said has to request referral. I am just looking on the net to see if we can contact Mr Puntis direct, unfortunately, Margaret, who is Reece's local nurse and gets things rolling for us is also on holiday or she would have made some calls today I am sure. I am just waiting on Stacey calling me back as the GP's were on lunch when she rang and so could not speak to anyone. I told PALS this morning how much of a dilemma we are in but she basically said this is the only way and she understands that we have had to wait already but will still have to wait.

Yes, I understand & agree 100% Maureen. But we wait & wait, get passed from piller to post, & tomorrow never comes.

If you want us/me to back off, we/I will, but really, nobody at the Hossie is taking respnsibility here, it's pass the parcel time. And Reece is the parcel.
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« Reply #1128 on: October 12, 2009, 02:38:58 PM »

Don't want you to back off no, never xx Just phoned Reece's community, stand in for Margaret,  nurse. She is going to call the GP and see if they can hurry the letter along. If she finds out anything she will call me back.  Our hands are so tied, we  are basically almost 3 weeks behind from where we thought we were, we can shout till we are blue in the face but we will not get that referral now until the GP requests it. I am just going to try one last thing and that is try and speak to the ward manager again at manchester. P A L S did say that once we have got Reece transferred we need to put all this in writing.
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« Reply #1129 on: October 13, 2009, 10:36:44 AM »


How did you get on, Maureen?
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« Reply #1130 on: October 13, 2009, 12:08:55 PM »

Still no reply from Charity man that I PM'd you about I'm afraid Mo.      Now moving onto the newspapers, I can only but ask some peeps I know but they have higher echelons to run it by, but if you don't prod and poke you don't get, so fingers crossed.  You never know.

x

Edit - PM sent
« Last Edit: October 13, 2009, 12:18:17 PM by HOLDorFOLD » Logged

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« Reply #1131 on: October 13, 2009, 01:56:27 PM »

Been in touch with the Ward Manager over at Manchester today, she went into his notes and No, the letter has not been done, also the appointment we requested last week with Antonino has not been set up. The Ward Manager then went to the ward clerk to request an appointment for when Antonino returns, but the Clerk said she is not allowed to make Appointments for Anotnino he will not let anyone but himself or his secretary do it. So got to wait till Monday.

With Reece being sick I requested swobs to be done last week by the Community Team, they have just rang me and said that Reece has a very large growth of bacteria growing on both his new line and his Gastrostomy, so I might have been right of the sickness cause. She has faxed the results over to Manchester but I told her my concerns that they may not be looked at until Monday coming. However, she says she has already requested antibiotics from his local GP, lets hope they can provide the best ones needed as these usually get prescribed by a specialist in the past, they will be ready tomorrow. It will be interesting to see if anyone does contact us from Manchester re: infection growing or if it will just get left on the shelf over there.

Off to work for me soon but Darren has Reece after School on a Tuesday and the nurse is coming  to weigh him and check him over.
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« Reply #1132 on: October 13, 2009, 10:42:09 PM »


Sorry I missed your Call today Mo, & never rung you (or Tom, for that matter) back. Bad day here, & all sorts of stuff going down.
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« Reply #1133 on: October 13, 2009, 10:47:54 PM »

Been in touch with the Ward Manager over at Manchester today, she went into his notes and No, the letter has not been done, also the appointment we requested last week with Antonino has not been set up. The Ward Manager then went to the ward clerk to request an appointment for when Antonino returns, but the Clerk said she is not allowed to make Appointments for Anotnino he will not let anyone but himself or his secretary do it. So got to wait till Monday.

With Reece being sick I requested swobs to be done last week by the Community Team, they have just rang me and said that Reece has a very large growth of bacteria growing on both his new line and his Gastrostomy, so I might have been right of the sickness cause. She has faxed the results over to Manchester but I told her my concerns that they may not be looked at until Monday coming. However, she says she has already requested antibiotics from his local GP, lets hope they can provide the best ones needed as these usually get prescribed by a specialist in the past, they will be ready tomorrow. It will be interesting to see if anyone does contact us from Manchester re: infection growing or if it will just get left on the shelf over there.

Off to work for me soon but Darren has Reece after School on a Tuesday and the nurse is coming  to weigh him and check him over.

This is tilting me super hard Maureen, so God only knows how you must feel.

I just can't grasp all this bureaucracy & Admin stuff.

There's no law which says Reece's GP is the only person on earth who can refer him, & this "nobody can book an appointment with Antonio so you'll have to wait" is so wrong. But in your position, I do understand, it's so tough to break down these sodding barriers that these bloody jobs-worths keep putting in the way.

Now he has - almost certainly - an infection on the way, & their answer is to have the antibiotics ready to cure the infection. Better by far to stop the infection before it arrives, surely to God?

I know you know all this, but it's easier to see this from a distance.

I hope this does not come across wrong, (I apologise if it does) but it's unbelievable, and I am super-dooper grumpy tonight.

I'll call you tomorrow (Wednesday).

xx
« Last Edit: October 13, 2009, 11:05:30 PM by tikay » Logged

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« Reply #1134 on: October 14, 2009, 06:59:40 PM »

On the brighter side, here's the man today, just after school finished.

Thanks Maureen.

« Last Edit: October 14, 2009, 07:59:23 PM by tikay » Logged

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« Reply #1135 on: October 14, 2009, 07:56:12 PM »


On the brighter side, here's the man today, judt after school finished.

Thanks Maureen.



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« Reply #1136 on: October 15, 2009, 08:39:53 AM »

Poor night last night, Reece slept over here but was uncomfy all night, vomiting and the noise coming from his tummy was unbelievable, not stop curdling all night long and so loud. Therefore no school today. Already spoke to a community nurse this morning who is coming over later this morning, she is also calling his new consultant in Calderdale to put him in the picture, however, he is a Paediatric Consultant, not the specialist in Reece's field that we are trying to get over to. It may mean they contact Manchester to seek advice, which in that case it will be a trip over there and a sit in A n E for hours on end no doubt. We really do not want to set foot in that place again so a bit of a dilemma really, we have to do what is best for Reece and if he needs to be seen over there then we will have to bite our tongues and go I suppose. He is OK in himself today, eaten his breakfast and now looking through toy mags for birthday and Christmas pressys. He has got a cold starting though.  Weight last night 14 kilos, Weight this am after vomits 13.5.

The GP could not see Stacey until Friday morning to discuss the referral letter. So still waiting on that one.
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« Reply #1137 on: October 15, 2009, 12:20:54 PM »

I really don't know what to say Maureen other than try and keep your chin up and that I'm thinking about you all.

xx
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« Reply #1138 on: October 15, 2009, 12:48:55 PM »


Aaarrrggghhh.

I can only echo Ralph's sentiments, I'm lost for words, I just don't know how you cope with all this frustration.

xx
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« Reply #1139 on: October 15, 2009, 12:52:56 PM »

I don't know what to say either, but thinking of you all xx
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