Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent
I have just posted this on the email site re the PCT meeting. :
"Well my eyes have been truly opened today at the meeting. Two of the local support group ended up coming with me which was great. We are three very different people with the same agenda.
The lady was very nice and totally agreed the care for children is diabolical in this area !!! She said that she had had a big meeting with the adult consultants including the two paed ones back in June. She asked them to do a business plan. She spoke to them two weeks ago asking where it is, she has given them a further 6 weeks. She said that if they can't provide better care, and we are talking just basic stuff here, she will outsource to other areas in the rest of the county. She mentioned one place which is perfect really, they are already pumping and it is accessible to all of the whole county.
However she wasn't aware that there was no DSN at all for either hospital and she said she would get one and make phone calls today. She said she would ring the hospital trust and if they can't provide someone then she will purchase another one for another area until we are sorted. This is how the money works, ie she purchases time from elsewhere. We are worried and told her that the trust could produce a non specialist which is very worrying. She was clearly being told different to what we were being told by the teams and she took that on board as well. She knows this is all priority. She has apparently argued till blue in the face that both hospitals can put people on a pump and she would 'buy in' a dietician to help with the carb counting and she mentioned a good one I know. However she is being told by the consultants that they will not put people on pumps. We however, are being told by the consultants that the DSN (who has been seconded for a year and is rubbish anyway) won't put people on a pump until have a full team. PCT lady said she can't supply a full team yet as no-one pumping so that is why she would buy that in per person to begin with. Once pumping is up and running then we will get a full team. We have a pyschologist in place apparently. However people aren't told that at clinic, I didn't know !!!!
The worst bit of the meeting or rather the most enlightening bit of it was that the two paed consultants are not paed consultants eek. They are adult consultants who do the children as well. This is why they have no child friendly 'speak', care for adults is so different for children. I was shown (another meeting this afternoon) a level book by a mum who is fighting to get her daughter off mixes. The levels were consistently in the 20's and she had been told that was normal and ok !!! She knows its not so is being supplied with a retired DSN to go through 4 injections. How bad is that.
She took the details of the RCN contact re glucagon and agreed it should be in all schools. She said the trouble was that they didn't have a childrens community nurse team to do any training. I told her the DSN should be doing this along with care plans. She said they should all have care plans, I told her none of the children did unless the schools asked for one and the parents did it !
Anyway it went well. I asked for time scales and we shall see. She is going to organise a big meeting for us and the key players from the PCT, the hospitals trusts and the consultants. Should be interesting stuff. At least we know we are in agreement.
Thanks for all your help and I'll keep you posted.
"The information in this e-mail and any attachment(s) is intended only for the individual or entity to whom it is addressed. It may contain privileged and confidential information that is exempt from disclosure by law and if you are not an intended recipient, you must not copy, distribute or take any action in reliance on it."
Interesting stuff eh. I'll keep you posted. 🙂
"Well my eyes have been truly opened today at the meeting. Two of the local support group ended up coming with me which was great. We are three very different people with the same agenda.
The lady was very nice and totally agreed the care for children is diabolical in this area !!! She said that she had had a big meeting with the adult consultants including the two paed ones back in June. She asked them to do a business plan. She spoke to them two weeks ago asking where it is, she has given them a further 6 weeks. She said that if they can't provide better care, and we are talking just basic stuff here, she will outsource to other areas in the rest of the county. She mentioned one place which is perfect really, they are already pumping and it is accessible to all of the whole county.
However she wasn't aware that there was no DSN at all for either hospital and she said she would get one and make phone calls today. She said she would ring the hospital trust and if they can't provide someone then she will purchase another one for another area until we are sorted. This is how the money works, ie she purchases time from elsewhere. We are worried and told her that the trust could produce a non specialist which is very worrying. She was clearly being told different to what we were being told by the teams and she took that on board as well. She knows this is all priority. She has apparently argued till blue in the face that both hospitals can put people on a pump and she would 'buy in' a dietician to help with the carb counting and she mentioned a good one I know. However she is being told by the consultants that they will not put people on pumps. We however, are being told by the consultants that the DSN (who has been seconded for a year and is rubbish anyway) won't put people on a pump until have a full team. PCT lady said she can't supply a full team yet as no-one pumping so that is why she would buy that in per person to begin with. Once pumping is up and running then we will get a full team. We have a pyschologist in place apparently. However people aren't told that at clinic, I didn't know !!!!
The worst bit of the meeting or rather the most enlightening bit of it was that the two paed consultants are not paed consultants eek. They are adult consultants who do the children as well. This is why they have no child friendly 'speak', care for adults is so different for children. I was shown (another meeting this afternoon) a level book by a mum who is fighting to get her daughter off mixes. The levels were consistently in the 20's and she had been told that was normal and ok !!! She knows its not so is being supplied with a retired DSN to go through 4 injections. How bad is that.
She took the details of the RCN contact re glucagon and agreed it should be in all schools. She said the trouble was that they didn't have a childrens community nurse team to do any training. I told her the DSN should be doing this along with care plans. She said they should all have care plans, I told her none of the children did unless the schools asked for one and the parents did it !
Anyway it went well. I asked for time scales and we shall see. She is going to organise a big meeting for us and the key players from the PCT, the hospitals trusts and the consultants. Should be interesting stuff. At least we know we are in agreement.
Thanks for all your help and I'll keep you posted.
"The information in this e-mail and any attachment(s) is intended only for the individual or entity to whom it is addressed. It may contain privileged and confidential information that is exempt from disclosure by law and if you are not an intended recipient, you must not copy, distribute or take any action in reliance on it."
Interesting stuff eh. I'll keep you posted. 🙂
Bev x
