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.

You can only speak for yourself, not ‘we’. You might have decent knowledge and understanding. Others might not.

You have also cherry picked one small part of a JRCALC guideline on abdominal pain / intestinal obstruction to quote and ignored everything else, including the guideline on patients with communication difficulties. That is a cognitive bias in itself (as is the defensive nature of your post). JRCALC guidelines are there to support decision making in the context of the clinical presentation you find on careful assessment of your patient. They’re not there to make the decisions for you. Person-centred care and all that.

Additionally, most people were referring to a need for additional training in the assessment of, and communication with patients who have learning disabilities. There is a lack of understanding across the board, which is why health inequalities still exist and why those with learning disabilities have a preventable lower life expectancy.

This is also why the Oliver McGowan two tier mandatory training is currently being rolled out across the NHS. If you haven’t done yours yet I suggest that you make the time to do so. I also suggest you show some professional self-awareness and reflect on why you are so defensive about a very clear need for additional training for these responders and the NHS in general on attending incidents where the patient has a learning disability and complex needs.

Constipation in people with LDs is a whole different kettle of fish though. I think that’s what people like me were pointing out. It wasn’t a personal attack on your professionalism and skill. People with LDs and/or autism have significant health risks and it has required ongoing systemic change within health and social care.

As an ambulance technician you're not trained to diagnose, nor differentiate, between the conditions you've rhymed off (nor is the paramedic trained to diagnose the condition). Which is why ambulance crews are expected to err on the side of caution.
And the OP's daughter has a learning disability, not a learning difficulty, there's a crucial difference!

Assisting a patient with bags/belongings is neither a dignity nor training issue, it's an act of kindness. So perhaps not training so much required, as a reminder that you ARE allowed to be kind 🙂

Consultant tried to discharge her with a bowel blockage.

Good grief

Have you managed to stand firm?

I wasn't with her at the time but one of her nurses from the LD team said no. Every other healthcare professional agrees that she shouldn't be discharged.

The LD nurse asked the consultant what the next steps would be if they can't move the blockage and the consultant said that there isn't anything else they can do. That doesn't sound right.

That doesn't sound right at all. They can try enemas and if they don't work manual evacuation is surely a possibility.

That's what I thought but this consultant apparently said they don't do manual evacuation at this hospital 🤔. It's a big hospital.

@StopTheQtipWhenTheresResistance well is quite simple, the next step would be to surgically remove the blockage or the bowl will start to die. Put a complaint in with PALs if you can.

This consultant is not trying to help in any way.

Exactly! I'm not medically trained but I know the final option is surgery. Hopefully that won't be needed but it's like she wrote my daughter off is irrelevant.

Yes, I was considering making a complaint because attempting to discharge someone with LD, a bowel blockage and not eating and drinking is unacceptable really.

Would you complain now or wait until she's home?

@StopTheQtipWhenTheresResistance I would complain now as they will be able to act with her in hospital.

Definitely complain loudly now and contact PALS.

Unfortunately, some professionals don't have a clue when it comes to dealing with LD

I've just sent the complaint through to the PALs service for this hospital. I've taken screenshots of what I wrote so I have a record. I don't know the name of the consultant as I wasn't here but I'm sure the name will be on record for them to look at.

Did you manage to sort out the carers OP?
When my DD was alive we were allowed to use our carers in the hospital. DD had 1 carer and 1 qualified nurse. The nurse was not allowed to give medication or operate any hospital equipment as she wasn't from an agency on our hospital's approved list. (She was able to do all these things for DD in our home though). They were allowed to be with DD and care for her though and make sure they chased up nursing staff to do medication

Yes, daughters team managed to sort it out and the care provision has been reinstated so they should be able to come to the hospital each morning which will be a big help as I can leave when they arrive.

I'm so sorry about your daughter 😔

If your daughter isn’t eating or drinking then she needs IV fluids or an NG tube inserted (which she will hate and possibly pull out).

Stand your ground. They can keep increasing laxido/movicol until the stool is soft enough then with the enema the bowel should do it’s own thing.

If she’s not drinking the laxido then all the more reason to have an NG tube inserted. They will hate doing that as nursing staff will need to do a PH test before every use to check it’s still in the right place. And if she takes meds like gaviscon it will cause havoc with the ph result.

@Anewuser She's on IV fluids but a feeding tube would be far too distressing for her. Once some of this poo moves along and comes out, she should hopefully get her appetite back.

Daughter is supposed to have daily enemas but has not had one since the day before yesterday now. They said they want to wait until I'm back at the hospital but I was there all day yesterday and this morning but they didn't do one. I'm not back up there until tomorrow afternoon now.

They also keep going on about her eating and drinking, not seeming to understand that she's not going to eat or drink until this impaction has moved.

I took her to the toilet this morning and she's constantly burping like she is going to be sick.

I don't feel the hospital are taking this seriously enough and I fear it could lead to further complications for my daughter.

I've been following your thread @StopTheQtipWhenTheresResistance , and I'm so sorry for what you are going through.

It isn't right that they are avoiding giving the required treatment while you are not there. Have you told the LD Nurse? Are the carers with her yet? Surely the longer they put it off, the longer your DD will have to stay in hospital.

I can't help but agree that the hospital is not taking it seriously enough. I was reading about an NHS campaign last year that was designed to educate medical staff as to the seriousness of constipation in those with LD. It's shocking that such a campaign is necessary, and even more concerning that it has apparently not had an effect at this particular hospital.

Wishing you all the best for a positive outcome very soon.

I'm so sorry to hear that you aren't getting anywhere, but sadly I'm not surprised.

The NHS treatment of patients with LD can be shocking. In my area there was an appalling case of someone being failed and the family set up a foundation in his memory and they have driven some positive changes in local hospitals and in the wider area. I have a son with autism and LD and we had a very positive experience recently when he needed to go to hospital.

https://paulriddfoundation.org/

Oh @StopTheQtipWhenTheresResistance this is awful, your poor daughter. I have no experience I can use to give advice but this sounds incredibly traumatic for you all.

@StopTheQtipWhenTheresResistance I’m so sorry for the treatment (or non treatment) your daughter is receiving.

There is no logical sense for why they would have to wait until you’re there, in order to give her an enema.

What if you were ill or on holiday and not able to get there for a week?

Obviously she is going to find the process unpleasant but it’s very quick and with support or distraction you’d hope she will be fine. It’s quite clear they expect you to do it at the hospital. How will their staff ever get experience of working with disabled adults if they don’t treat them?

I can only suggest contacting PALS again or speak to the ward Matron, we’ve always had excellent responses when Matron is on the case.

I’m so sorry your and your DD is having such poor care. I’m not surprised, I’m afraid, we’ve had similar experiences with my DD who has LD.

I would recommend asking your LD nurse to act as an advocate for your daughter and escalate the complaint process with PALS. Write everything down, when something happened, what didn’t happen, keep sending it to PALS,

It’s utterly exhausting but this is the state of hospital care at the moment.

How is your daughter today OP?