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?

Also, try to state everything factually
It’s ok to put how it has made you feel but you need to give examples of what is going wrong

So X happened on X date, resulting in X

^ I didn’t mean to us on MN but in a complaint. And to your GP

When you say "complaints dept" have you contacted PALs who are independent - I've always found them very good.
If you have some evidence of genuine mistakes / coverups you could do a FOI request which could potentially provide some answers and get them to check their procedures.

Ok your choice . But what will happen now ? You say your children, so let's assume 2 of them are having problems at any given time, so on average you are having 3 appointments a month. I'd think that would cost you over £500 a month easily and I'd not be surprised at nearing £1000 - £1500 not including medication. Is that doable month in, month out ?
Tbh cutting your nose off to spite your face comes to mind. And although we don't have the full story, is that fair to your children ?

one potential harm occurred when my youngest child was an inpatient o TPN feedi g which is feeding directly into tje heart.
This involves two " drips " one nutrients and one fat both going at different rates but at the same time.
They almost killed her by mixing up the rates giving her 3 days ( as more fat in the bag than needed ) of fat straight into her heart over 3 hours rather than one third of that amount over 20 hours.
They had a sheet which should be filled in by a nurse every hour noting down the rate the pump is at, amount given and ampunt left to infuse.
The mistake was only discovered when the fat bag ran out and alarmed the pump.
This happened at night and my husband was asleep and didnt know .In the day we would have noticed ourselves.
They simply turned it off and pump the nutrients one to thr correct rate.
6 hours later my husband woke and realised there was an issue and asked a nurse.
He has to ask thrm to get a dr who phoned the city hospital ( 4 hours later) to ask advice
Their adbice was to get the hell out of there and head to thrm. where it was discovered her liver wasn't coping with the fat.
we were told at local that a full investigation wpuld take place.
We didnt hear back and it turned out no Datix ( nhs mistake reporting ) has been started.
We made enquirues why.
This triggered an investigation.
We asked for copies of notes. Lots had big black marks through areas.... blocki g ua from seeing sections. Apparantly due to a third parties name being protected!??
what they forgot to remove was a cooy of the form they filled in noting rates and amounts left.
There were two for that same day/ night.
one shiwed the rates as they should habe been .. allegedly checked right up tp the finish time .. every hour .. past when the mistake was discovered looking as if all was normal.
The other was filled in as the rates the wrong way around but with no signatures .
when we questioned and showed them ( the investigating internal people) they said they didnt have the first one on their record and said perhaps we has compiled it
worse they admitted they had made the error but blamed my husband firstly as he has chatted to rhe 2 nurses as they set up the drips and said he was pushing them to do it quickly as he wanted to sleep. He is the quietist , shyest perspn ever and this didnt happen .
They also blamed the city hospital for their " poor training " in the pn feeding regime .
the problem with this argument is that the pumps used are the same as if a child were having antibiotics and fluids together at differnt rates
They then made a big deal.of us having complained... except we didnt we asked why no one had contacted us .

.

oh that is horrible op, if you are happy and paeds happy elsewhere, go for it.
and ask for further clarification, take complaint further.

so this is a nursing issue is it?

I can see why you would be so upset and lose faith in that hospital & staff. I would request no further treatment there either.

I think you need to work with the city hospital in order to make sure a proper plan is put in place.

I get why your saying you don’t want to be treated there but you need to make sure there is a sustainable plan in place, especially in case of emergency admission.

You also need to check if it will cause any issues from a prescription POV as I was told our dietican had to be a the local hospital due to the processes for ordering (and more to the point paying for!) feeds.

I believe you. I do.

I am worried that you'll end up with a total breakdown with staff and you'll end up with ss involvement and a situation like the Melody case at Kings (no idea of details/rights orwrongs just seen the fall out)

There was some new pilot mediation scheme happening in some hosps post CG AE cases I wonder if its something gosh has access to

OP I am not sure posting here is a great idea because you will receive some harsh words.

I can help you with sorting out a complaint and what to do and how if you want to PM me. It sounds like you do have a reason to complain and are finding things really tough.

I don’t think people appreciate how disorganised some hospital departments can be, perhaps under funded and understaffed which often results in a complete nightmare for patients trying to coordinate healthcare across different departments and trusts. The NHS do not have joined up IT systems and it can fail and they should be trying to make patient flow/experience better not make you feel so desperate that you need to withdraw

There obviously can be safeguarding issues but no one can speculate on those without all of the info

You need to create a clear paper trail. Write a chronology of everything that has happened, how you raised the problems, how they were dealt with etc. Send it to PALS, the Chief Exec of the Trust, your MP and the Ombudsman. Make sure everyone is aware you are going to the ombudsman.
Speak to your GP explaining the problem and document you have done so.
Contact the consultants at the City Hospital and GOSH asking that care is now shared between them.

This way if anyone tries to suggest you are the problem, you have a clear body of evidence of substandard care and that you are actively working with the other hospitals to provide continuity of care.

@ChazsBrilliantAttitude

Yep this is exactly what you should do

That sounds like an issue for an NMC referral. www.nmc.org.uk/concerns-nurses-midwives/concerns-complaints-and-referrals/

Op I fear this could come back to haunt you.
Please consider carefully.
I agree with pp's that this won't end well and will make your life more complicated. Just because the system backs the organisation naturally, rarely the individual.

I had a not dis-similar experience with ds1's primary and SS, so admittedly not a hospital. I made complaints about blatant lying, falsifying documents, etc. I had a strong case, loads of good evidence. I took legal advice and both my parents, ex senior social workers, were shocked. I got nowhere.

Think about what you really want here and how you can realistically achieve it.

OP I think our NHS is amazing and wonderful and I wouldn’t have believed what you were saying but for hearing similar at two recent inquests into the death of children. The NHS is seriously understaffed, underresourced and under trained and children are dying because of it. Mistakes are covered up or forgotten or deliberately fudged by arse-coverers.

I’d do what Chaz said then ask to get the thread deleted tbh

Chaz & Pookie give you great advice. I'm so sorry to read this, it's a very difficult situation and I completely understand why you feel the way you do. Had similar 20 years ago when I was pregnant, and its true, you never think that these things happen until they happen to you. Good luck.

So do Oblomov & janicebattersby

Actually i really wouldnt follow Pookies advice.

Id phone GOSH and the other specialist and say is it possible for you to cover the entirety of DCs care. Or even more subtle can we have (whatever the next procedure) is done here, DC is just so much more relaxed here... repeat and rinse.
Gosh in particular tend to know how goid they

Complaints are hard to prove conclusively and Likely to be stressful whether you suceed or not. Your also more likely to get professionals under pressure going for you.

Ive had way more success sidestepping difficult individuals than complaining about them.

She has already complained. And the complaints department have made things worse by the sounds of things

If she wants to complain, take it to the Ombudsman. It’s not up to us whether she does or doesn’t take this further it is up to OP, and those are her options. If she wants to drop it, then she will. Do not go telling people it’s not worth it it’s not your call to make.

I also said go back to GP and call other providers to find out if they will take your care. But if you live 200 miles from GOSH this is not going to work. So you will need to find a closer hospital that would be able to take the care as either emergency admissions or for routine follow up if required. You cannot assume that GOSH is the right place with the right resources to do this

you need to make a more formal complaint. Don’t bother with pals - ask for a meeting with the head of nursing and your dd’s consultant at your local hospital. Or write straight to the chief exec of the hospital trust. They will want to avoid formal complaints being progressed so will try to work with you to resolve the situation. You need to know what measures they have put in place to avoid this happening again. We suffered far too many mistakes over a period of many admissions and on the last one they failed to diagnose some very obvious signs of serious infection/ body shutting down and my dd died as a result. Please shout loudly and make sure your dd gets the care she needs. Aside from the complaint, have you ensured gosh will cover her care going forward? I would speak directly to your gastro consultant/ cns at gosh to try and get this sorted. Good luck!

I agree with the last poster. Having had similar before it just got worse going over things with the local hospital.

I would focus on a plan for the future so you can avoid that hospital and get admitted perhaps to GOSH or another one.

I meant Volcan's post

That is shocking it really is.. I think as long as you ensure the primary care is transferred to the other hospitals and detail this thoroughly I can’t see how this can be seen as you withdrawing care and being difficult. Some posters seem to suggest keeping quiet and accepting poor standard of care is the way to go, just imagine if no one ever complained or raised concerns about this as you ‘won’t get anywhere’ it’s a dangerous and slippery path. Good luck op

Agree I think if there is any doubt or concern that they may raise this as a safeguarding issue then to cover yourself I would take all routes to be on the safe side, even if this doesn’t result in a complaint upheld It is irresponsible advice IMO to just drop it