Hand hold while I wait for ambulance for daughter

[StopTheQtipWhenTheresResistance]

Currently waiting for an ambulance for my daughter. Been sent as category 3. She's not been right for a few days now, not eating, not drinking, just laying slumped on her bed. This morning she collapsed in the bathroom and went really pale.

She has a learning disability and complex mental health problems so she can't tell me what is wrong as she doesn't verbally communicate when she feels unwell.

She was in hospital a couple of weeks back due to an infection (see previous threads) so I hope it's nothing to do with that.

I'm so worried, I feel sick.

????

I'm very glad you are now in hospital.

Some really horrible - and frankly strange - comments on here, especially those giving dangerous advice.

People often tell a lot of lies and exaggerate a huge amount on this platform I.E I'm a paramedic etc. So take everything with a pinch of salt.

Those that are so angry at the OP having an ambulance sent out don't know her daughter or history. They need to direct their angry at the reasons why public services are in such disarray for example years of government policy and budget cuts.

I really hope your daughter gets back to herself swiftly!!

I’m a paramedic and would absolutely not have an issue with this call. The crew that attended appear to have acted appallingly. It’s not acceptable to a) have said that to you and b) that they did nothing to assist you in helping your daughter to the vehicle. Please make a complaint.

Diagnostic overshadowing as a cognitive bias is a huge problem in patients with learning disabilities that are unable to communicate their needs. They need careful assessment. Constipation is one differential here (which can be life threatening if it is severe). It is not the only differential.

Hope your daughter makes a speedy recovery x
I've got a learning disabled son and it's so difficult and worrying when they can't say what's wrong 😩

Best of luck to your daughter, I hope she is soon on the mend.

Those who came on this thread simply to attack OP should be ashamed of themselves. What sad little lives you must lead if this is how you get your kicks - appalling behaviour 😡

“Constipation can be life threatening in people with Learning Disabilities. It’s not the same as your average Jo suffering constipation.”

I just wanted to reply to that . As an average Jo constipation is still very serious. I’ve had unexplained constipation for a while which comes suddenly and without warning . Whilst my body trembles and shakes to try to go I vomit and have once passed out . Whrn I know constipation is looming to the extent that I know it can’t come out I take an enema and hope to heavens it works . Most times it brings relief . But it’s a mistake to say it isn’t serious for the average person. It really can be

I'm glad your daughter is getting the help she needs now, OP, and really sorry that you've been given such a hard time.

You did exactly the right thing for your DD, and I hope she's soon on the mend.

If any of my staff was spouting this crap on an online forum I’d be putting them through a disciplinary. You need to reflect on your professionalism here. I really hope you are not actually a member of ambulance staff and if you are, well I really hope you aren’t in the same Trust as me with this attitude.

It isn't the same.
The difference is that you have the cognitive ability to communicate your needs and manage your condition.
Imagine if you couldn't and had to rely on others to advocate for you.

I hope you'll have positive news Op. you've done the right thing and been a good advocate for your child.

And Lisa - yes I totally agree constipation can be very serious and frightening. It shouldn't be diminished. But I hope you don't mind me pointing out that you are able to track your symptoms and talk to medical staff. It's very hard to be medically responsible for someone unable to recognise or communicate their symptoms - the responsibility to monitor and talk on their behalf can be overwhelming.

And thank you to all the HCPs that listen to and engage with the learning disabled and their families. We appreciate you.

I was saying it can be life threatening in others too who don’t have special needs. Constipation is laughed at and sometimes dismissed but can be serious in anyone , that’s all.

We are still waiting for a bed on the EMU ward. Once I've got her settled down, I want to respond to as many posts as I can. The support has been lovely and I really needed it. Just didn't want anyone to think I didn't appreciate the support because I really do 😊

By the way my comments are not intended as a comment on or criticism of the OP. I totally get the enormity and difficulty of advocating for someone who can’t communicate or co-operate , I was only commenting on constipation so side tracked a bit there .

In people with LD, they may not have the sensory info/messages from their bodies. Let alone be able to communicate their needs to others.

You might not feel the sensation of needing the loo, you may not feel pain until it's very severe, you may not have the executive function skllls and working memory to realise that you haven't been for a long time, to eat and drink in a way to help your body, to take regular medication.

Yes, it's difficult for everyone but when you have LDs it's a whole other ball game. It's why health outcomes for this group are overall so poor.

As a fellow parent of kids with LDs, sending you a big hug. You must be exhausted.

Gosh you must both be exhausted. I hope you both manage a bit of rest and your DD makes a quick recovery.

So sorry you've had some horrible replies. It just goes to show mothers instinct is correct. You know her better than anyone and you've persisted and got her the help she needs. Huge well done to you. I'm sure you are exhausted from worry.
I hope the antibiotics kick in quickly x

Wishing you well OP, its tough enough having an ill child let alone one with complex needs. I hope you get some rest and reassurance too. Hospital with sick children is an endurance test. Sending hugs.

Hell no! He was concerned because of your daughters issues that she wouldn't present the same as a "typical" patient with whatever illness/infection she has.

He comes home with some stories of people wasting the ambulance services time, but he definitely wouldn't say that about someone presenting with your daughters symptoms, especially with the underlying conditions.

OP- wishing your daughter well. I hope she gets the medical help she needs and is better treated in hospital. You sound like just the mum your DD needs.

The systemic ableism in health and education, as well as in society as a whole is hugely problematic. Even more so for people with LD who struggle to have their voice heard. It’s the drip, drip, drip of incidents like this that explains why people with LD have much lower life expectancies than their non-disabled peers.

Unfortunately there is a huge lack of understanding in public services of the particular needs of people with LD, and often a distinct lack of interest. It’s parents like the OP, who advocate and voice their child’s needs who often literally keep people alive.

Well done OP. I’m in awe of parents who do what you do.

Thank you for everything you do 🙏

Bless you, OP, you must be exhausted. I hope you and your daughter get some rest tonight and that she is soon feeling much better. I’m in complete awe of the way you’ve managed to advocate for her and get her the care she needed

I am so sorry op that at this scary time you have been stressed. You did exactly the right thing for your dd. Wishing you the best and a speedy recovery for your dd.

Yes, of course. I’m sorry to have implied it is not serious. It can be. It is just particular risk factor in people with LD diagnosis.

I’m for what you go through. You should, of course, never ever be made to feel you cannot seek medical attention when you’re in that much pain and unwell. Nobody should be made to feel guilty for accessing help.

@PostItInABook Couldn't have put it better myself!