To have removed my children from local NHs care

[northumberland88]

I know no one can tell me if I am being unreasonable or not without knowing the full story and the full story's 10 years long!
my kids have a mixture of gastro and nutritional issues that have lead to shared care between our local district general hospital, a large childrens hospital in a big city and GOSH.
Local hospital have made so many mistakes . created lots of communication issues which have caused dangerous mistakes . On and on the list goes.
We have struggled on with them. Made concern / complaints. Tried to be positive about them but tjis has now seriously caused so much stress and harm I cannot cope anymore.
So yesterday after a farcical email from thr complaints dept I sent one stating i was withdrawing them.from any further appointments etc.
I am.aware people will say isnt that dangerous but seriously im removing them.from harm.
Has anyone done this or know what they will say?

OP, when did this happen, how old was your child, and what harm did this error cause them?
TPN is fed directly into the bloodstream, not the heart, and my pharmacist sister has never known the feeds to be in separate bags. She works in paediatrics, so should know.
When you made your initial complaint, what was the outcome?

Thank ypu every one. great advice much appreciated

soon to be sister..TPN csn be given by a central line ( like my daughter ) or PICC line usally in the arm.
Have a wee google and that may sort ypur confusion.
lets hope your sister isnt an nhs pharmacist

just for you soon to be 60

these are some.of the bags
soon to be 60
the yellow one has everything apart from fat
the white... fat.
maybe you could inform your sister

GOSH
Talks about two bags
www.gosh.nhs.uk/health-professionals/clinical-guidelines/nutrition-parenteral

Thanks Chaz .
i find it odd a poster would ask her pharmacist sister what am saying is true!
even odder that a pharmacist works presumably in a paediatric hospital and didnt know this.
thanks everyone else for being supportive and honest.

You have to do what you feel is right for your kids. From your posts it’s clear that the NHS has failed your family.

However you need to have a plan to continue the care for your kids, not just for them but also because social services could try and interfere.

Soontobe60, if your sister works in paediatrics then I agree she should know that the fat is usually supplied in a separate bag. The fact she doesn’t is a huge problem and sounds like her hospital has delivered equally poor training to the staff as the hospital in the OPs post.

Clearly NHS staff in standard hospitals don’t have the knowledge needed to care for your DC and you’re not unreasonable to want to move all care to a more specialist hospital. When my DD had a tracheostomy we had similar issues at our local hospital where no nurses on the ward were trained in tracheostomy care - DD now has open access at the large children’s hospital in our nearest city as the local hospital just can’t meet her complex health needs.

We requested transfer of some of DDs appointments/care to another Authority because of poor performance.

As long as you can demonstrate you are having them seen elsewhere, I can’t see there would be a problem with it.

I would never in a million years trust the NHS with my children unless I don’t have any other option (I’ve read so many negligence cases that I know that systematic failures are rife. It’s not bad doctors or dodgy nurses, the whole organisation is unacceptable. The NHS is not fit to provide sophisticated medical care). But I do choose the NHS over nothing (I have once actually when my son had an accident in the middle of the night. In hindsight they took so long to actually treat him that he’d probably have come to serious harm if it was a serious accident but it wasn’t-which they did verify...after four hours. Still. Better than nothing.

I am a nurse in a large children's hospital. It very common for many of our families to refuse to go to their local DGH. It makes sense to stick with the local teaching hospital and GOSH.

Trying to work out how on earth tue mistake with the TPN could have occurred in the first place. The rates and amounts to give are printed on the bags and double checked by two nurses and the infusion rate and Volume to be infused is checked by two nurses.

OP you obviously have valid reasons for wanting to cut out the care of your local hospital I don't think that it is unreasonable at all to no longer want them as part of the care of you dcs in fact as pp have said I know many families who are in similar positions.

I do think you have acted though completely understandably, slightly rashly, I would start with the practical firstly emailing or contacting you lead Drs at your city hospital and asking if all inpatient care and out patient can be carried out by them and how you go about arranging that. You can email GOSH as well but from my knowledge it's unlikely they would be able to pick up much of the care as they mainly see children for planned appointments surgical issues ect which shouldn't be affected by the local no longer being involved.

I have known several families set up systems like this and it works and it's not dangerous or a problem in anyway they attended one bigger/teaching hospital, not the local, for all appointments, admissions ect and have their tertiary care else where. It works and actually should be supported if your local can't safely look after the care needs of your dcs.

However emergency care as in 999 ambulances have to go to the closest hospital you can request to be transferred once stable in A&E but not before. There is no safe way to avoid that.

Once you have safely put a system in place for the care of you dcs o would strongly encourage you to keep pursuing the complaint against the local the patients association can be good for advice on helping cut through the red tape of the NHS sure there are others out there too

patients association

I am not accusing anyone of lying! Your bear photo actually confirms what I said, that the line does not go directly into the heart, it goes into the vein leading to the heart. My sister was with me when I was reading your post, and of course she's interested!

www.christie.nhs.uk/media/2620/legacymedia-2777-980.pdf

The Christie info refers to 1 bag. Maybe different hospitals have different procedures.
Age could be a reason for the different procedures and the fact that different hospitals do administer this in different ways could obviously give rise to mis administration. It's a good job you managed to take photos of the bags!

When they say a vein leading into the heart they mean something like this. No the tip shouldn't be in the heart put it's pretty close! Close enough to not argue the toss in my opinion. They are great lines in terms of access and getting bloods but they carry a massive risk of infection among other things and so should be treated with caution and I think that was the more the ops point.

The leaflet you linked is about adult PN I think which is normally in one. Paediatric PN is nearly always in 2 bags and Unlike adult bags tend to be made specially for the patients as oppose to a 'standard' bag.

TPN isn't that common and it's not something everywhere will have lots of experience on. But if the ward can't safely met the needs for that child then they should of been honest and facilitated that happening elsewhere. Even if there was nowhere they could transfer to that night it would have been safer to mange the child on iv fluids that to give tpn if they didn't understand or weren't competent to do so (which it doesn't seem they were).

Toddlerteaplease... that was exactly our point.
two nurses signed that it had been set up properly .
Soonto be i took the photos once as i wanted to email our TPN nurse a query. I remebered i still had them

www.msdmanuals.com/en-gb/professional/nutritional-disorders/nutritional-support/total-parenteral-nutrition-tpn

This explains the process, and notes that the calories are usually provided via carbohydrate, but may occasionally be supplemented by lipids, which is I assume what happened in your child's case? Hence the need for 2 bags.

soonto be
like most children on TPN it is a sole source of nutrition.
I didnt see any child in 6 montjs of being in hospital just have the non fat bag.
It literally is life saving and not used for top ups.

Robs20 so sorry to hear that

I cant see your point you are trying to make in that link.
Im.not sure what youbare trying to achieve here? are you genuinly interested?

OP please ignore people just picking holes

Have you decided what you are going to do next?

I am.gping to phone ,
social.services ( we used to habe a disability socila worker.. may still have and tell them.
phone ; big childrens hospital lead consultant we under and explain and ask what we can do amd if they can help.
Possibly phone our MSP and see what they can do.