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".

Well done for taking him in OP and for continuing to push. I hope all is getting back to a more even keel in your new normal

I am sorry to hear he has diabetes but very pleased to hear that you have been seen and he is now getting the care that you need. Good luck. Diabetes is a journey but there are really great tools out there these days.

Thank goodness for advocating for your child, well done you

Thanks for updating OP, sorry to hear he was diagnosed.

It will probably all feel absolutely impossible now but honestly now that my daughter is on a pump we can go for hours without really thinking about it other than to bolus for meals so that’s something to have in your mind
for future.

Make sure to join the Parents of Children with Type 1 Diabetes Facebook group, it’s really useful.

Also glad that it’s being raised that the GP let you down so badly. Giving him the benefit of the doubt maybe your sons other conditions threw him off but there is still a lesson to be learned and you absolutely should have been able to call up and request a finger prick that day you went to A&E.

I'm sorry to hear that it is diabetes, but very relieved that you got him checked out in time.

So glad you got him seen. I’m so cross at your gp on your behalf I was reading your post and thinking it screams probable diabetes. To not do a finger prick or urine dip is pretty negligent. Am glad the consultant is following that up.

I’m so glad you pushed and fought for him.

If I were you when the shocks worn off put in a massive massive complaint against the GP. PALs GMC the lot.

Utterly utterly unacceptable. If you had been more trusting of the GP like is many unfortunately are - this could have ended very differently.

My late husband was diabetic. I used to order testing strips from Amazon.

It's beyond ridiculous that the GP hasn't done a test already. OP shouldn't have to do it herself, but needs must.

This one does include glucose:

https://www.amazon.co.uk/dp/B0154TLIL6?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1

Apologies - I missed the update.

So glad that you went to A&E, OP.

I cannot for the life of me understand what your GP was thinking of. I had various symptoms and was concerned that I might have diabetes. No longer had testing strips in the house and my GP tested me straight away - it was a UTI.

However, the first time I sent my late DH to the GP because of his obvious symptoms, the GP just checked his prostate...and DH wouldn't listen to me because a GP had said that he was fine. (Possibly the GP was thrown by the fact that my DH always kept himself fit - in middle age, he weight lifted and ran half marathons.)

The next time I nagged him into going, a locum was at the surgery and he immediately instructed DH to nip to the gents and produce a sample. Within a few minutes, he had a diagnosis of diabetes.

How devastating for you and your son, I’m so sorry but thank goodness you now know

So glad you went to A&E, well done for persisting. It's a lot to take in but there are good charities who will have targeted advice and support for kids/parents.