Such a blooming waste of NHS resources!

[ArnoldBee]

So my DSD needs a blood test to confirm if she has a genetic enzyme deficiency. We as a family know what the genetic implications are, what the blood test involves and it needs to be sent to a hospital in Bristol that deals with this specialism. We know she will be referred for the blood test as we've been through it all with her brother. However instead of the NHS just doing the test we've got to wait a year to see a genetics consultant to waste their time for them to order the test when they could be seeing people with actual issues that need sorting. It's such a waste!

Oh but if she gets pregnant they'll do the referral quicker!

There’s so much wasted time and products in the nhs. If that could all be sorted out the nhs would be so much better. We’ve had prescriptions meant to be delivered to elderly relatives and they turn up with items missing so she has to phone and ask where they are and then someone has to deliver again. Happens every month. Such a waste of time for the pharmacist and delivery person. Lots of other examples too

The NHS is ridiculously bureaucratic and old fashioned. They need a kick up the arse and to move into the 21st century, which we are nearly a quarter of the way into. They are still communicating via letters FGS.

Who is going to order and interpret a test for a genetic condition if not clinical genetics? Is she already under another specialty? Just sounds like she's on the waiting list for an appropriate service tbh.

People are so overprotective of the nhs, it’s needs a radical reform, I agreed to have results by letter or phone, but no had to go in, to be told results were ok so for a literal 30 second meeting. I didn’t have time to even sit down

how much better to have a letter or call, that whole clinic could have been used to see people who had been referred

but unions kick off and no government is strong enough to do anything

your daughter is an individual, and needs to be seen and treated as an individual, not as an extension of a family who might or might not have given her full correct information, or might or might not understand how the deficiency could impact on her personally. SoYABU

There are such demands on the NHS that there do need to be procedures in place, I do agree many are ridiculous and seem wasteful but many aren't. I think the system will be better when it's a hybrid system which I'm sure it will be soon, things will be more accessible.

Yes you are being unreasonable. It's standard medical practice for a patient to be counselled before undergoing genetic testing. You wouldn’t book someone for an operation without a consultation because their brother had had the same procedure and they supposedly knew the risks.

So much of what the NHS does is still done that way to keep people in jobs. They'd be unemployable anywhere else because what they do was rendered obsolete in the private sector 20, 30 or 50 years ago.

This.

The fact your dd is being respected as an individual is a good thing. She may come back with something unexpected in her results. She may not share a father with her sibling. It would be reckless to leave this to parents.

What a load of rollocks

There are many, many inconsistencies and disruptive consequences of the poor infrastructure within the NHS and its numerous departments, but YABU in this regard, genetic counselling is important and your DSD needs to be provided with it before hand.

It's a straight forward blood test to show the level of enzyme in her blood - that's literally all we need to know. That level will show if she has the genetic abnormality and will determine what medications she can prescribed in future without dying. The effect of the enzyme level means that certain substances can't be metabolised so family members have died. So all quite straight forward.

No actual genetic counselling will be provided.

They have people typing up notes, minutes from meetings etc from those little cassettes. Where else is that done? Sending letters on paper, through the mail, to communicate between surgeries and hospitals.

Anywhere else, a few clicks and a series of appointments could be booked there and then, with confirmation texts automatically being sent to the customer at the appropriate time. In the NHS - letter there, letter back, letter there, letter back, letter sent to customer. At least some of the letters are still typed out manually. It's fucking ludicrous, Dickensian even.

its not about what you need to know, it is about your DSD, and she is a different person to whoever in your family has died

You seem very blasé about the test. The result has significant implications - being at risk of death if given the wrong medication. The appointment will certainly include an element of 'counselling' I.e making sure you understand why the test is being done

She already knows why it's being done as it's an open discussion especially with a teenager as one of the substances they need to steer clear from is cocaine, the agricultural fertilisers are a bit easier!

its an "open discussion" with you! thankfully, she is entitled to her own medical care away from you and independent of you

So when your DD sees the consultant she'll be given zero opportunity to ask questions, and so will you as her parent? No chance to ask questions, I mean. Well that is pants, fair enough.

What benefits would happen now if your DD had the test done today?

Waste and inefficiencies are crippling the NHS more than funding but no one’s interested in that

Feel free to provide the money to update the IT for the entire NHS. We'd all welcome it. We don't love using systems from the 70s and pissing everyone off.

Alas, the government couldn't give a shit and the public are the ones that suffer. Wish everyone would direct their scathe at the the politicians rather than the 'NHS is shit innit' narrative everyone churns out.

Your dd need s the opportunity to ask questions and decide herself if she wants the test. You mention she's a teen, so it's not actually your decision to ask for the test it's hers and appropriate guidance is needed first. To not do this would be negligence. To those saying let's do it all electronically since we went tonsending appts by email or txt missed appt have risen, why? Well alot of older patients fail to open texts or don't have phones or intret connections that allow them to access the message , younger ones in more deprived aresa just don't have acess to Internet. I've lost count of the patients who want letters back

They spent many billion pounds on a new computer system not too long ago. Yet they are still doing things the old way. This simply wouldn't happen in the private sector.

Who spent billions? Every trust is differently funded and run. My trust hasn't had an IT upgrade in decades. Our system is akin to teletext and there's no money to upgrade it.