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".

Go back to the GP and ask them to expedite the appointment. If it carries on A&E as this could be sign of an underlying different medical condition which needs urgent attention.

I'm so sorry to hear this. Does he need paediatric phlebotomy? Could the GP or a practice nurse do it? DH is a paramedic attached to a GP surgery and he does children's bloods via a home visit often. Apologies if this is not relevant - obviously I know nothing about your particular case.

Excessive thirst and unexpected weight loss say type 1 diabetes to me. Take him to A&E immediately OP

@Nevertrustacop he needs to be seen my paediatric phlebotomy as he's under 12

If he is drinking excessively and losing weight he should have a finger prick blood glucose tested to make sure it isn't type 1 diabetes.

Is it diabetes you're worried about? Surely the GP can do urine test and finger pick blood test in surgery today?

Agree with the above - insist on seeing GP or practice nurse today for finger prick and urine tests. If he has developed diabetes it’s an emergency. It needs to be ruled out by these very simple tests.

I think I will take him to A&E but I am so worried they'll have us waiting hours and turn him away. The whole NHS care in our area is dire at the moment.

Sounds like Type 1 diabetes (my daughter has it). He needs to see a doctor urgently. If you tell a receptionist those symptoms she should recognise the urgency. If not, go to A & E. It’s serious.

Could be either Type 1 diabetes or a posterior pituitary malfunction. Either way, it is urgent.

Also confused why you can’t start in the immediate term with a finger prick and urine sample at the GP?

If the weight loss, thirst and increased urinating is recent then T1 definitely needs to be top of your list and absolutely can’t wait a week.

Call your GP and tell the receptionist these symptoms and you should be given an app today. We were seen within about half an hour of me calling with these symptoms and then straight to A&E. Don’t go straight there if you can go to GP first.

I’m not being dramatic but if it is T1 your DS could be in HDU/ICU within the week if it’s not discovered. It’s much more traumatising for them to be diagnosed that way than like my child where it was caught early enough that she wants in DKA yet.

@HoppingPavlova We saw the GP on Monday - He has given us a blood and urine form but the waiting list for those to be tested is a month. Our GP surgery doesn't carry out any tests unfortunately

Your GP can’t dip a urine sample? Sorry but that’s nonsense surely?

@NewishT1Mum we have already seen the GP who has given us a blood form but in our area you need to make an appointment for it. The next available is 24th March - They only offer 70 Paediatric Blood Tests per month in the whole borough

I would absolutely take him to A&E now and ask them to check for diabetes, it’s really urgent. Has his breath got a smell like pear drops?

My frustration isn't with the GP as we were seen urgently as you would expect. It's the need for tests after that point. You cannot get seen by anyone any sooner. I've even made a complaint to PALS who informed me that they only have 70 Appointments per month across the borough

I can’t believe what I am reading. Suspected T1 diabetes is a medical emergency. There’s no waiting a day never mind a month. It’s not something that needs a blood test that goes to a lab (initially). It’s dip a urine sample or do a fingerprick and the diagnosis is more or less right there.

I definitely think you need to call them now and make your concerns (maybe more our concerns, sorry!) about T1 abundantly clear. Ask if GP can fingerprick today and if not then it is an A&E job.

Diabetes a and e

@CactusForever no, no sweet smell coming from breath or urine. Which makes me wonder if it's Diabetes Insipidus too

Would your pharmacy or practice nurse do a diabetes dip or finger prick test?

It sounds like his other diagnosis maybe is muddying the waters with blood tests etc?

@NewishT1Mum I know! I have been ringing everyone I can and nobody can do anything to expedite. It shows how broken the service is getting to make children wait! I will collect him from School and take him to Urgent Care

Not everyone can smell ketones, it's genetic. Go to A&E!
People die from Diabetic Keto Acidosis sadly