Furious with our NHS

[DaxyLover]

Good Morning mumsnetters...

So a little bit of background by 8YO DS has hEDS (Hypermobile Ehlers Danlos Syndrome).

Currently he is under Community Paeds and a Dietician for being under weight.
He's tall and slim which is not uncommon for EDSers.

He's always struggled with bed wetting and has been on the waiting list to see Enurises for a long time. Upon chasing recently, was told 14 Month wait...

We have always had to encourage him to drink water until just over a week ago and now it's like he can't get enough water. Drink after drink, pee after pee.
Even in the night he's waking for a drink and the loo but he's filling his dry nites, changing in the night and yet still leaking through by morning.
He's absolutely shattered with headaches.

Not only this he has lost weight. So our struggle with him weight gain is getting worse. He was last weighed in clinic at 24.4KG which was still low for his height.
On 21st Feb I weighed him at 24KG as he looked gaunt. Then again today. He's lost 1KG in just 5 days.

I had contacted the Paediatricians PA who can only give the next available appt which is end of April!
So I made an appt with the GP - He's requested a blood test and water sample. Next available blood test with the Paediatric Phlebotomy team is 24th March. 1 WHOLE MONTH AWAY!

He cannot afford to lose weight as it is let alone wait a month.

It seems nobody is bothered, meanwhile I'm balling my eyes out with worry.

Our NHS is so broken!

I think this is serious concern or am I over-reacting? I don't want to go to A&E to spend hours in Triage to be turned away with "Wait for your blood test appt".

Best of luck OP. I hope it isn’t T1 but I promise if it is you will both be ok.

Keep us posted when you can.

@NewishT1Mum Possibly. He is under many doctors for different things. His Consultant Paediatrician is suppose to be the umbrella for it all but she's always behind on appointment schedules too.
He's under Rheumatology, Orthotics and O/T for his EDS, and on a waiting list for Enuresis. But I can see the drastic change. Usually I would send him to school with a bottle of water and the same bottle would come home full and we battle a whole constipation issue. Not anymore!

Take him to A&E or a walk in a dr or nurse will be able to take the blood might not be as skilled as a paediatric phlebotomist but will get it done.

The symptoms you describe are worrying enough and the care on offer to you via community services is not suitable due to the wait. If I was triaging you I would definitely have no issues with you attending A&E or whatever other walk in urgent services are available to you in the hospital.

@Tumbleweed44 thank you, that is assuring to know. I dread being one of them over-reactive parents but it's so out of character. Even my DH is worried and it's not like him, he's usually of the "He's fine" mentality...
Going to collect him from school and take him to Urgent Care

No phlebotomist required for initial finger prick test

I would rope off "needs blood tests arranged via xyz" from the current active symptoms which are type 1 diabetes until proven otherwise, via a very straightforward bedside test that should be offered at the GP (if it genuinely can't be you will have to go to A&E).

Your GP may not be aware there's a one month wait for peads bloods and there are always other routes - call them and let them know as you may find yourself fast tracked through other routes.

It seems your issue with A and E is the wait, yes there may be a wait, yes it's a pain with children, but also if it's diabetes it will get picked up quicker.

Agree with everyone else this is ridiculous. Why couldn't the GP do a quick urine dip test at the suregry? When similar happened with DS at age about 3, he was seen immediately, and a dip test done. Even then, it came back okay but she still sent it off just in case.

Can a pharmacy offer a dip test, even if you have to buy it? I know you can get ones for yeast infections but not sure about sugar?

good luck at urgent care/A&E.

There was a very powerful piece int he FT magazine about this the other day. The way that NHS processes are breaking down and causing problems. It was absolutely heartbreaking to read but also incredibly frustrating because the very fact that the process was broken meant that not only did the young man in the story die, but the whole thing took hours and hours of NHS time for something that could have been dealt with in one 10 minute call and a 5 minute pharmacist appointment.

I would probably call 111 and they would tell us to go to a&e, the peads area is usually pretty efficient and they will be expecting him. Not sure if it's the same in your area though.. either way, definitely take him to get checked out asap

I’m surprised you sent him to school. Are you at A&E now?

It truly baffles me how different nhs care is throughout the country.
Firstly I have never heard of a GP surgery that dang do basic tests for a child. No wonder you’re stressed!
Do you have the option of going through 111? Here they would triage and book through either another GP service or give an appointment for an Urgent Care centre rather than A&E. Not all of our hospitals here have A&E.
Hope you get some help today.

That’s a bit unfair. Unless you immediately know what to suspect here and DS is fine in himself apart from these ongoing symptoms why wouldn’t the OP send him to school? Nothing changed today other than OP writing this post and us all agreeing it can’t wait.

This. He has all of the Ts. It needs to be ruled out as a matter of urgency.

They can be done in chemist but not sure this would apply to children.

I would honestly buy some urine dipsticks and a glucometer from the chemist and check myself to rule DM in or out. Ludicrous that this can't be done by the GP/Practice nurse. Think they seem to have a blanket policy for under 16s, there is a vast difference between trying to get blood from a 2 year old and a 12 year old.

I'm going to echo PP go to A&E! GPs are not infallible - I had one that didn't notice a love one's obvious jaundice. The symptoms are concerning, better safe than sorry.

OP from what you've described it sounds like Paediatric A&E would be the place to go for investigations right now, not in several weeks

My cousin is type 1 diabetic and presented like that when she was around 10 years old- excessive thirst and losing lots of weight

Those symptoms do not sound normal in an otherwise healthy 8 year old

Hope all is ok

You may have to wait hours but I think it's unlikely they'd turn him away/refuse investigations with those symptoms

Please go straight to A and E and explain he needs to be urgently tested for diabetes. Excessive thirst and sudden weight loss are classic signs and every minute can count - you need to get checked before he falls into a DKA coma (if it is T1).

Just put out a call on social media! There are 100% people you know who have diabetes or have had gestational diabetes and have all the testing equipment. You just need a lancet and a test strip which are cheap and disposable. Just make sure you test 1-2 hours after eating so the body is actively metabolising glucose.

You don't need a GP appointment for testing, though depending on the result you can use that push for more treatment. Agree that you will probably be shafted to the very end of the queue if you show up at A&E. And depending on the waiting time, his glucose levels may fall to normal range and you'll end up with no answers.

Hope all is ok OP

That last line proves you know nothing about type 1 diabetes at all!

Go straight to A&E and do not leave without at least a finger prick blood sugar. If he has suddenly developed diabetes, which he could well have done, it is a medical emergency.

You can go to a children's A&E, you don't have to go to your nearest one.

It's not 'our' NHS

Stop swallowing this marketing shit that's making people accept terrible service

It's a government service that you are paying for with taxes

You wouldn't say 'our' MOT service, would you???

@all Good Afternoon everyone.

I just wanted to pop and give an update. Sorry I didn't update sooner. Life has been chaos.

You were all right. It is Diabetes. I took him to A&E and he had a finger prick which read 30+ Glucose with 3 + Ketones. Luckily his ph levels were just under but the consultant said he was about 18 hours away from ketoacidosis .

The consultant is writing up an incident report about our GP and how he failed to finger prick test despite presenting with the 4 T's - Thirst, Toilet, Tird, Thin.

He is home from hospital now and we are adjusting to our new way of living with insulin.

Thank you for re-assuring me that I was not over-reacting.