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?

PS namechanged. ive been a poster for ober 10 years

How will this help your children, how will you access the care that they need? I can see this has been frustrating but you need to re-engage.

Have the other 2 providers confirmed that they can take on the medical duties the local hospital was responsible for?

Surely that's just swapping potential harm, from miscommunication, for actual harm, as they won't be able to access treatment they need.

If you can afford private healthcare YANBU to seek an alternative provider, if this leaves your children entirely without medical support for ongoing health issues, expect a referral to social care.

You aren’t necessarily being unreasonable; what’s your plan for getting them the care they need?

Can you afford private healthcare?

You need to clarify who is going to take over their care

You actually have the right to choose a care provider you do not have to stick with the one you have. But you need to clarify who is going to take the care on. Whether the specialist hospital would is not guaranteed. Is the local hospital providing a paediatrician but the specialist a specialist paediatrician?

I live in between 2 hospitals one is awful and always in the news for it’s terrible performance the other is a huge renowned teccy teaching hospital and I can choose which one I go to.

You need to see GP to make sure you are under the care where you need to be and get a referral to another hospital. Clarify with the other hospitals if they are taking your care

So YANBU choosing the care provider in a sense but you need to make sure this isn’t going to set your DC back and make things a lot more complicated!

red flags will be waved op.
do you trust any of the doctors?

at your local hospital, can you ask for a different consultant? there must be a team? or do you have another not so local but general hospital?

As others have said who is in charge of the care now? Where will they get any treatment and medication from that is needed?

It sounds like you are stopping all care in which case you are being very unreasonable

WIll the city hospital and GOSH manage their care without a local hospital doing the bottom line management? What are your contingency plans for urgent/emergency admission to hospital if you won’t use the local hospital? Will the local CCG fund treatment out of area I find there is an alternative centre closer to home that should be able to manage the day to day aspects of the care under guidance from the specialist centres? And will they permit your GP to refer to ‘out of area’ trust without a fight?

These are questions you need to consider and have back ups for if the answer is no.

That sounds like a bad idea OP. Would it be possible to request GOSH take on all of the care and appointments instead to save being passed around & given possible conflicting advice?

Complaints dept is separate from the other parts, why are you reacting to them and withdrawing care? Sounds very unreasonable and possibly dangerous for the DC. GOSH is a huge expert hospital most would be glad to have a referral for care there.

I would expect that the other hospitals have a duty of care but this is so much more complicated when it is specialist referrals, as usually local hospitals (should) act as your care navigator and routine check ups which you don’t get from the specialist services. Technically speaking your GP is the main point of access to services so go back to them and talk to them about it.

Nose, face and your children could suffer.

Have you told the local hospital you won't be using them anymore? Sorry wasn't quite clear?

As long as a different hospital can and will pick up everything you would need it for, it's fine. Not always that simple though.

If you just aren't going to use it when you need to or don't turn up to appointments, it will trigger a safeguarding referral as you will be seen as obstructing the care of a child.

The hospital in question will most likely refer this to Social services. I have been involved in a similar case with a pupil I taught. Parents did not like the hospital, or consultants, complained about her treatment constantly, didn't get anywhere with it. They then refused to take her for appointments. SS became involved and queried fabricated illness 'syndrome' on the part of the mother. None of the parents concerns were upheld by investigations. Child is now under a different hospital with agreement, but it's such a pity because she has to travel half way across the country for appointments at parents cost, and the expert consultant in this field is no longer managing her treatment!
OP, I would seriously consider this. What findings have been made in regard to your complaints? Unless they show neglect / incompetence then you will be the one to be seen to be doing harm to your child by the professionals I'm afraid.

My trust has all gone and cannot be regained.
Im aware red flags will be raised.
I guess its a cry for help ..
I genuinly cannot cope.
I am usually a normal reasonable person who has huge " traditional" trust and belief in the nhs so much so it has tsken me 0 years to get to this.
I know it sounds unbelievable but they have colluded and lied so many times to cover up.

I would check GOSH and the other hospital can pick up the pieces first.

But yes i would have no hesitation in doing this either

Has it resulted in harm being done or potential harm being done?

agree, i would check that another paediatrician is happy to take up the reigns.
can you break down who exactly you have lost trust in? the system? a particular doctor?

that should say 10 years.
you read about people saying this about the nhs and ive immediately not believed it till ive experienced it myself

We can’t speculate that social services will automatically be called.

OP just calmly contact your GP on Monday and explain you want a transfer to a different local hospital. If all trust and communication has broken down I understand why you feel this way and it sounds upsetting for you. If you have attended all of your appointments and done your best then this may be the best course of action.

You can also contact the parliamentary and health care obusdman on 03450154033. Or your local CCG to take this higher and try to get a resolution if you have had no luck via PALS and want to make a complaint.

Contact the other hospitals and let them know what is happening

Ombudsman that should say!