district nurses wont come in

[flossie]

sorry, fairymagic, don't mean to hijack this thread- it's just when I saw the words "Community Matron", it seemed like a light at the end of a long and frustrating tunnel

[bowlingbun]

The world HAS gone mad! It would suggest that you have superior medical qualifications than the doctors and the nurses, which I suspect you do not! It just shows the "not my job" mentality, but amongst it all you aren't getting the rest and respite which you deserve. Have you tried complaining to a higher level? I hate to suggest this when you are undoubtedly fed up with complaining. Pity Esther Rantzen isn't doing "That's Life" any more, it's an ideal example of bureaucracy gone mad, which she could name and shame. Take care. Jill

[fairymagic]

thats ok flossie wish you the best of luck,when thay sent terry home with injection pen and blood tester i wanted to run i didnt have a clue terry showed me what to do and i got on with it your problem is hard and i do hope it gets sorted x

[ladybird]

brogusblue-would that be our local gp or the one nearest to the respite house?(its 25-30 miles away).
bowlingbun- the out of hours service is co-ordinated at our local hospital and all they could suggest was for the respite staff to put DD in their car and take her to the hospital 25-30 miles away to have this 12 second injection(it's simple, like an epipen,) late at night,leaving the one other staff member to get every other caree off to bed.She didn't quite comprehend why I thought that was somewhat unhelpful,and got huffy.
If i got ill, DD would be in trouble
They did send a doctor to do it that time, but won't do it again.The doctor phoned me when she got to the respite house and was rather short with me too(,after asking how to give the injection.)
the respite staff aren't allowed to give any sort of injection, but can receive training from District Nurses . I'm not allowed to show the staff -but I'll have to go and give the DN's training in how to do it .It 'ain't difficult. I was shown in 5 mins.(but I can follow instructions )
We've been waiting since june last year for a training session to be arranged with me , DN's and respite staff.Tried various times since, but no luck.

Fairymagic, apologies for gatecrashing your thread pet.

Flossie, i was just wondering, as our lasses have the same condition, is your lass not able to manage self-administering the injection? I know some don't feel comfortable with it but if it is like an epipen and the jab is just sc (under the skin)then could she do it herself with staff just observing she has dialled up the right amount on the pen?

Of course, a lot depends on what the injection is and if your dd is willing to do it! Rachael had 3 injections of rapid acting insulin, 1 of long term insulin and 1 of growth hormone every day, I was quite lucky as she was able to do this herself(even though she did ask me often, too lazy to do it herself sometimes!)

This rigmarole that you are having to go through is ludicrous..if she had a serious allergy, Im sure someone would be trained to use an epipen, even if they weren't medically qualified. Surely someone at the respite place could learn how to do it!

Perhaps dd's care manager/social worker can sort something out so one person can be trained..kind of defeats the purpose of the respite otherwise!

[flossie]

ladybird- i tried teaching DD how to use the injector pen, but her hands are small- more like 5yr olds hands, and though she could grip the pen barrel, the reach and strength needed to press the injector button 'aint there + she tilted the pen on exit, making me wary that she could do the injection safely herself.
I have no medical qualifications - i just listen to what I'm taught and I follow instructions.
We have a visit from community nurse and new social worker this monday and this will be one of the topics up for discussion. Wish me luck !

[bowlingbun]

I'm wishing you lots of luck. Jill

[NanaNana]

Fairy, you said, "each DN does what they think and don't read the notes".
That is exactly the problem isn't it? Care workers seem to have their own ideas of what to do and not what needs to be done. Then they all do different things.
Isn't there any way that you could get the same one to come all the time, instead of different ones? Then there might be an ounce of 'continuity', yep that's another good word which the NHS seem to like a lot!
Best wishes to you, I thought you'd got this sorted. Still, trust doesn't come easy these days, I know.

[flossie]

i think getting the same DN to come to fairymagics house every time is a great idea, but probably impossible,frandrake.if only
writing a basic list of "must - do's" for your husband's daily care and sticking it up for each DN to follow is a very practical way of ensuring his needs are met.
If they're willing to comply ...good luck ,fairymagic

[fairymagic]

you never see the same dn in the week i will have to get the matron to write the list cause if i do thay will get huffy and there good at that i hate all this i feel like i am telling them what to do all the time and acting like a spoiled child if thay dont but terry has nearly died so many time because thay wont do as there asked i dont understand almost every time that plastic tube blokes he ends up fighting for his life cause it seems to go to his lungs as well i just feel on my own and how many others are in the same place as us and is it going to get wores as more and more cut backs kick in sorry just feeling peed of agian lets hope things change this week if the matron comes round x

[bowlingbun]

If the matron writes down the instructions and they are still not being followed, then make a formal complaint - by email for speed if neccessary. It's an absolute disgrace.