To be nervous about my child having an operation in a private hospital

[elliejjtiny]

Tbh I'm nervous about this operation in general and we've known since he was born that he would have to have this operation and he is now 10 so that's a lot of nerves.

Ds is 10 and has had lots of operations already (20+, I lost count in the end). This one is quite major and he will be in theatre for 3 hours. Ds's normal surgeon is off sick for the foreseeable future so they've brought in another surgeon. We have met him and he seems nice but he does his operations in the private hospital, including the nhs patients, rather than in the children's hospital where ds's usual surgeon works.

For his first operation, which is similar to this one and the same length, ds needed to be in hdu for a few hours afterwards as he took longer to wake up than expected. The private hospital doesn't have a hdu for children, just 3 adult icu beds so he would have to be transferred to the children's hospital about 15 minutes drive away if he needed hdu. The surgeon said if he'd needed hdu in his last operation then this one would be done at the children's hospital just in case but as he has had other operations in between them it wasn't necessary. I asked if he could have the operation at the children's hospital anyway for my peace of mind and was told no. At his last operation (which was also 3 hours) he was really sick multiple times despite having the max dose of ordansetron. He was in the day surgery unit of our local hospital and they sent him home after an hour on the ward, still vomiting and so sleepy that he had to be brought out to the car in a wheelchair. I told the surgeon this and he said the private hospital can cope with that.

Ds is actually quite excited about the operation, mainly about having time off school, being fussed over and getting ice cream afterwards. Obviously I'm not letting him see I'm worried. My in-laws keep saying that it's great that we're in a private hospital and I should be grateful etc and I am but tbh I quite liked being on a ward last time with other children having the same operation. Also I would feel safer at the children's hospital. Ds also has learning disabilities which makes me nervous and he usually has a play therapist go down to theatre with him. We also always know the staff at our local hospital and the children's hospital which I always find reassuring. He has had a few operations where they have had to put him under kicking and screaming and I'm scared of potentially having to do that without help from the play therapist. I know they have peadiatric nurses at the private hospital but not sure about play therapists etc.

And if the local hospital has no PICU bed. You could end up anywhere in the country. It's not as simple as just sending the retrieval team out.

tbh this shouldn’t be down to the surgeon but an anaesthetic team.
they are the ones usually go through previous surgeries / response / reactions and decide if it is able to commence without a hdu or icu bed available.
my daughter has had many operations for the first 4 years she couldn’t have them at our local specialist hospital because they only had a hdu bed and due to anesthetic team they wouldn’t allow it with out a icu bed as back up available in the same building as her.
now we can have it in our closer hospital onlt if a HDU bed is available at the time ( just in case )
we recently went private for an unrelated issue and it turned out it needed minor surgery but private hospital and her local team anesthetic teams Wouldn’t allow her under general at the private hospital due to their being no back up HDU beds.
her local team then had to refer her to the dr but at GOSH so it could be done there.
The anaesthetic team where your son is usually treated should be assessing the risk and whether it’s viable.

Also those saying that a private normal ward is probably the same as HDU are wrong. It isn’t just about capacity and staff - patient ratios.
there is certain equipments / skills that are not used on normal level wards.
same as HDU Vs ICU

If you can afford it OP hire a private paediatric nurse. Private nurses stay in the room with their patient and are quite common in private hospitals.

Or you could approach the play therapist who works at the children's hospital. They would have to sign up to an agency (if not already signed) in order to get insurance etc but one of the advantages of private hospitals is that you can bring in your own 'team'.

Private hospitals that undertake NHS work have to have the same numbers of qualified staff as NHS hospitals. They also have to have 24/7 doctor cover when they are treating NHS patients.

@sashh I very much doubt you can actually do that. They wouldn't be able to do anything or give any medication. Besides you need a nurse with experience in that procedure or area of surgery. Not just any paediatric nurse. When we've had agency nurses that work in district general hospitals, they've struggled as our patients are much more complex.

And asking a play specialist to sign yo
To do agency is also ridiculous!

They don't need to. The hospital nurses do the medication, it's just to have someone who can go down to theatre and help keep him calm.

It was very common with Arab patients when I worked in a private hospital. It was usually Australian nurses who would bring a book because there was very little to do.

Arab patients may be multi millionaires! I do t think the OP has that kind of money at her disposal.

which is why I said, "if you can afford it".

My child is currently waiting for an operation and has been for some time. We enquired with the NHS consultant that given the waiting list, should we pay and have the operation done privately. The NHS consultant advised against this and said private hospitals don’t usually have the capacity and facilities to deal with emergencies, and it would be better to remain on the NHS waiting list to ensure my child has the operation in a hospital that can deal with emergencies and any complications that may arise. Sorry to have added to your worries. All you can do is ask questions and make the best decision based on the answers and information you have. Wishing your son a safe and speedy recovery whatever you decide. X

I would absolutely not be happy with this. It's not about the better food or the nicer rooms or even the play therapist.
It's about what happens if things go wrong.
Things have gone wrong previously so it's not infeasible that it could happen again.
Could you go right back to the beginning and ask your GP to transfer DS's care to another team? Or ask to speak to PALs at your current team about your concerns.

@elliejjtiny my son had routine day surgery in a private hospital. He ended up needing ICU care due to a bad reaction to the anaesthetic. The private hospital couldn't handle this kind of issue as they only dealt with day surgery. They had a ventilator but didn't know how to make it portable and my DS, who has been sedated into a coma at that point, had to be manually ventilated (with someone squeezing a balloon thing) for an hour long blue light ambulance dash to a children's ICU, where he was kept under sedation for 24hrs.

That was our experience. It was unexpected, as my son had never had anaesthetic before. There were lots of staff there, but the hospital itself couldn't deal with this level of problem (the nurses were lovely and horrified and a few burst into tears when they saw us again a few days later, when we returned to collect the car) The private hospital that we were sent to was miles away from anywhere though, which doesn't sound the case for you. Ours was very rural.

On balance, taking in everything you've said, from scheduling delays to the proximity of the nearest HDU, and the interim operations without issue; along with your son's increasing maturity and positive feelings at this point towards a hospital stay, I would feel inclined to go ahead at the private hospital, with the provisional that you must trust the skill of the surgeon themselves. I think there's a good chance the other issues you've mentioned could be managed, but that is the key point in all of this. The actual likely success of the operation.

This is one of those questions that doesn't have a right answer, the surgeon is saying that the risk is minimal and you want to minimise that risk further so neither of you are wrong or unreasonable.

Is there anyone at the children's hospital that you can speak to (who isn't the surgeon?). You might feel they are more impartial.

Or ask at the children's hospital about how often operations are cancelled and the reason why? I've been given lack of beds as a reason before and I'm not sure that I would want an operation to go ahead if there were no beds at the children's hospital. If the main reason for cancellation is lack of a theatre then having the operation at the private hospital does increase the chance of it happening when planned so in that case I'd probably agree to the operation (but I'd first check if any major events are planned near the hospitals for the date of the operation).

Does the hospital do private peads surgery and have peads nursing staff etc etc? I'd be very wary of it if not. I had a v minor operation in a private hospital as a child and was the only child in the place, nursing staff were nice but didn't quite know what to do with me.
But how close is the Children's hospital?How long would an emergency transfer take? If close enough to be reassuring for you, it could be fine.

@turkeyboots that's if they have beds. We have been bursting at the seams recently. And a patient in a private hospital would be way down the queue for a bed over the patients in A&E.

Iv been in hosp many a time and for one if my surgeries I was in a private hospital and I have to say the standard of care was definitely higher. I was out in a private room so my husband was able to stay as long as he liked which was great. Wishing your son all the best x

DS is desperately waiting for Direct Jej and Gastro PEG operation. Current feeding device leaks and he has pseudomonas in bladder a gastro. Destroying his skin. Offered 29th Dec and cancelled due to Junior Dr Strikes!

I'd the the private hospital...in the same way I took 28th December. He'll be in for over a week...... We just desperately need the operation.

If DS needs HDU then Tlhe will be transported.

Good luck

When I have had a patient needing HDU/PICU level transfer from our NHS hospital without those facilities, it's unusually good for the retrieval team to arrive within 2 hours. I have known it take over 6 hours for them to come out, if already on another transfer. In the meantime, the combination of anaesthetics/paediatrics/A&E keep them alive. HDU transfers do not involve just calling an ambulance.

Thank you everyone. I didn't even think about what would happen if there wasn't a hdu bed available in the children's hospital. When my older son was in a and e at our local hospital they phoned the children's hospital to see if they had spaces in picu quite early on I think, although they managed to stabilise him in the end and he went to hdu at our local hospital. I never imagined he would have had to go further.

From the private hospital to the children's hospital is about 10 minutes drive on a good day but it's right through the city centre so if you add a football match into the equation then you could get stuck in traffic for ages.

Unfortunately I'm not in a position to hire a private nurse/play therapist.

I've just looked in Google maps and the next nearest hospital they do this operation in is 2 hours drive away. I'm not sure how practical that would be as we have quite a lot of follow up appointments after the operation and it's hard enough sorting childcare for the other dc to go to an appointment 1 hour away. I'm not sure if we would be allowed to change hospitals anyway. I'm on a facebook group for children with his condition and I've never known anyone to switch hospitals in the 10 years I've been there.

I wasn't going to name the operation but from your username @AnotherCleftMum I'm thinking that your child probably had or is going to have the same operation as ds is going to have (waves at fellow cleft mum).

We didn't meet the anaesthetist, just the surgeon, who wasn't even aware of ds previous complications until I told him during the appointment. Cue him frantically flicking through ds notes. I wouldn't have a clue chow to get in touch with the anaesthetist but I will talk to his general paediatrician this week who has been at most of ds operations at our local hospital and seems to know the content of his medical records even better than I do. She was also the one who recommend that after his first operation when he had to go to hdu that he should have his next 2 operations at the children's hospital where picu was available before returning to our local hospital for the next one where they have children's hdu but not picu.

Is it an alveolar bone graft OP? My daughter just had hers 10 days ago for the gap in her palate.

I just was just wanting to offer support and solidarity, I know how hard this journey is.

Regarding the induction, could they sedate him prior? My daughter was heavily sedated due to anxiety prior to being moved to theatre and it worked perfectly.

PM me if you want to discuss anything as I have been where you are!

Lots of love x

As an anaesthetist my own personal view is I wouldn't want my child to be anaesthetised in a private hospital in the UK if there was a hint of them requiring HDU.
Obviously we don't know all the details, which would give some nuance to the situation.
Some of my colleagues do have different views, which I respect, but I'm someone who definitely favours the full team being around for support approach.

As @Toddlerteaplease says, I would not be happy with my child undergoing any op in a private hospital without on-site Paediatric ICU facilities and an experienced Paediatric crash team. Can you insist on having it at the Children’s Hospital where he had his previous ops, even if this means a delay?

@ZellyFitzgerald ABG's are definitely not done privately, they are done in the regional cleft centre.

@ZellyFitzgerald yes it is the alveolar bone graft. He had midazolam before an MRI scan once but it tasted so awful that he spat it out and refused all oral medicine at the hospital for his next operation several months later as well. It's a shame because for my younger son who is autistic the midazolam worked brilliantly and he quite happily let them put him under anaesthetic. I was amazed tbh as I thought he would be a nightmare with it.

@Toddlerteaplease ABG's are being done privately in Bristol at the moment.

Forgot to add @ZellyFitzgerald I hope your daughter is recovering well and not struggling with the soft food diet too much. The restricted diet part is the main thing DS is worried about although he had a zoom meeting with some other children waiting for the operation and some who have had it done already and he was told that you should replace all food you can't eat with ice cream!