Transport to hospital appointment

[Bay Tree]

My OH has Alzheimer's and also skin cancer, Following day surgery, next week he has an outpatient appointment. The day surgery was an early start and the outpatient appointment is right at the end of the day. Early and late are a problem for him as he gets very tired and very anxious/confused about time and transport and I haven't been able to change the time of the appointment - other journeys on the train/taxi weren't great.
I've managed to book him NHS transport to get to the hospital as thought this might be better but that doesn't include me. So the problem now is: I can stay home and put him on the transport but I wouldn't then get to the hospital under my own steam in time to be there with him so he'd be reliant on other people. Or I could leave early and travel on the train to the hospital leaving him home alone to wait for the transport. Neither seem a great option but I'm wondering, has anyone experience of NHS transport? They say they deliver the person to the clinic and collect them from there after the appointment - I don't think my husband would wander off but the worry is that they drop him off and leave him to find his own way to the right department which would confuse him. I don't have any carers to help as there hasn't been a need so far. If he lived alone then it could well be he'd have to use hospital transport so am I wrong to worry? What I thought was a good idea doesn't seem so good now and I'm thinking maybe I'd be better cancelling the NHS transport and both going on the train, Any advice would be most welcome.

 

[sdmhred]

Hello @Bay Tree
Your husband is entitled to you travelling with him on the hospital transport as his carer. I would have thought this was a necessity with him having dementia. He will need you there for reassurance. Can you revisit the booking and explain that he needs the support?

 

[canary]

Ive got exactly the same problem @Bay Tree

OH has been having telephone consultations because I was having trouble getting him to the hospital (even with hospital transport), but as he is deaf the doctors can only speak to me. So OH was (quite understandably) sent a face to face appointment. When I tried to book hospital transport for him I was told that their criteria has changed. They are now concentrating on people who are wheelchair and bed bound.

Because he can physically get into a car they wanted me to use a taxi. They asked me what the main risk of using a taxi would be and I explained that he is very likely to have a seizure (he was going to the epilepsy clinic). I was then told that he could get transport, but I couldnt go with him. I protested that he had cognitive problems and was totally deaf, so he wouldnt know where he was going, or hear his name being called, or be able to explain his problems to the doctor (or remember what was said), but they wouldnt budge.

 

[maisiecat]

Ive got exactly the same problem @Bay Tree

OH has been having telephone consultations because I was having trouble getting him to the hospital (even with hospital transport), but as he is deaf the doctors can only speak to me. So OH was (quite understandably) sent a face to face appointment. When I tried to book hospital transport for him I was told that their criteria has changed. They are now concentrating on people who are wheelchair and bed bound.

Because he can physically get into a car they wanted me to use a taxi. They asked me what the main risk of using a taxi would be and I explained that he is very likely to have a seizure (he was going to the epilepsy clinic). I was then told that he could get transport, but I couldnt go with him. I protested that he had cognitive problems and was totally deaf, so he wouldnt know where he was going, or hear his name being called, or be able to explain his problems to the doctor (or remember what was said), but they wouldnt budge.

Hate to be political but it seems to me that the privatisation of the NHS has started with the elderly. More of the services used by the elderly have to be paid for ie ear syringing, foot care etc.
Last year when my husband was discharged from hospital we were refused hospital transport even though he has late stage Parkinsons and dementia. His mobility just switches off. We had to use a taxi and when we got home he could barely walk into the house.
I think every one of you that has transport refused need to email your MP's because I don't think this is an official policy just like the physio who told me that equipment couldn't be provided to my husband as he is in a private Nursing Home.
It seems to me that the hospital transport has taken over all the hospital discharge transports because bed bound patients don't go to Outpatients.
Perhaps the Alzheimer's society could pick it up with the Dept of Health.

 

[lollyc]

Ive got exactly the same problem @Bay Tree

OH has been having telephone consultations because I was having trouble getting him to the hospital (even with hospital transport), but as he is deaf the doctors can only speak to me. So OH was (quite understandably) sent a face to face appointment. When I tried to book hospital transport for him I was told that their criteria has changed. They are now concentrating on people who are wheelchair and bed bound.

Because he can physically get into a car they wanted me to use a taxi. They asked me what the main risk of using a taxi would be and I explained that he is very likely to have a seizure (he was going to the epilepsy clinic). I was then told that he could get transport, but I couldnt go with him. I protested that he had cognitive problems and was totally deaf, so he wouldnt know where he was going, or hear his name being called, or be able to

Ive got exactly the same problem @Bay Tree

OH has been having telephone consultations because I was having trouble getting him to the hospital (even with hospital transport), but as he is deaf the doctors can only speak to me. So OH was (quite understandably) sent a face to face appointment. When I tried to book hospital transport for him I was told that their criteria has changed. They are now concentrating on people who are wheelchair and bed bound.

Because he can physically get into a car they wanted me to use a taxi. They asked me what the main risk of using a taxi would be and I explained that he is very likely to have a seizure (he was going to the epilepsy clinic). I was then told that he could get transport, but I couldnt go with him. I protested that he had cognitive problems and was totally deaf, so he wouldnt know where he was going, or hear his name being called, or be able to explain his problems to the doctor (or remember what was said), but they wouldnt budge.

It beggars belief, doesn't it? How is you going with him costing any more than him going alone? Surely, you going, and supervising him, means he actually gets where he is supposed to go, and doesn't "waste" the appointment? Assuming it's a money saving exercise I can't see how that works.

 

[Louise7]

For info, NHS England do have a published ‘Non-Emergency Patient Transport Service eligibility criteria’ document, which refers to those ‘likely to qualify for transport’ if they meet certain criteria, and one of the criteria does specifically refer to patients with cognitive or sensory impairment.

However, the document states that it is for the local Integrated Care Boards (ICB) to ‘oversee any necessary more specific local guidance on the eligibility assessment process and how to determine eligibility within this national framework’ and having done a quick search of some ICB/Hospital Trust websites it seems that eligibility criteria can differ from area to area. I remember the last time that mum needed to go for a hospital appointment (a few years ago now), the person I spoke to went through a long series of questions before deciding that she qualified for transport and I could accompany her, whereas previously you could just ring up and book it.

https://www.england.nhs.uk/wp-content/uploads/2022/05/B1244-nepts-eligibility-criteria.pdf

 

[nitram]

I've managed to book him NHS transport to get to the hospital as thought this might be better but that doesn't include me

Try contacting PALS explain that your OH has dementia and that as his carer you should be allowed to accompny him on the transport.

 

[sdmhred]

In my experience it also depends on the helpfulness or otherwise of the call handler.

Top tips might be:

1. if you have a friendly professional on board ask them to make the initial referral - much less likely to be declined. Admiral nurse? Elderly nurse from GP surgery?

2. To get round using a taxi - say the person with dementia would be too unsettled in their mental health to use unfamiliar mode of transport. Indeed they are likely to be mildly to moderately agitated in hospital transport thence a familiar carer is required to accompany them. As we know anything unfamiliar has the potnential to be problematic for PWD so no falsehood there 🙈🙈

 

[scotlass]

anyone with dementia surely needs a carer with them when going to a hospital appointment. I know for a long time now my OH isn't able to repeat or remember what anyone tells him, it could be quite alarming for the pwd to be on their own, and it's not everyone who can drive or has their own transport.

 

[special 1]

My OH has Alzheimer's and also skin cancer, Following day surgery, next week he has an outpatient appointment. The day surgery was an early start and the outpatient appointment is right at the end of the day. Early and late are a problem for him as he gets very tired and very anxious/confused about time and transport and I haven't been able to change the time of the appointment - other journeys on the train/taxi weren't great.
I've managed to book him NHS transport to get to the hospital as thought this might be better but that doesn't include me. So the problem now is: I can stay home and put him on the transport but I wouldn't then get to the hospital under my own steam in time to be there with him so he'd be reliant on other people. Or I could leave early and travel on the train to the hospital leaving him home alone to wait for the transport. Neither seem a great option but I'm wondering, has anyone experience of NHS transport? They say they deliver the person to the clinic and collect them from there after the appointment - I don't think my husband would wander off but the worry is that they drop him off and leave him to find his own way to the right department which would confuse him. I don't have any carers to help as there hasn't been a need so far. If he lived alone then it could well be he'd have to use hospital transport so am I wrong to worry? What I thought was a good idea doesn't seem so good now and I'm thinking maybe I'd be better cancelling the NHS transport and both going on the train, Any advice would be most welcome.

No. My husband has had hospital appointments too, and I have travelled with him on all occasions without a problem. I say I am his wife and his full time carer. No problem. I am in Kirkcaldy Fife.

 

[jackdog35]

My dad went with my mum as he was classed as a carer even though she’s in a home. There was no problem, driver even asked if I wanted to go as well

 

[Jale]

Dad had to use hospital transport (not dementia related) when he had to have dialysis - the collecting wasn't too bad, but the returning home was not good. He was left a couple of times waiting nearly 2 hours for the transport home. We used to pick him up after the dialysis.

You should be able to accompany him as his carer

 

[Bay Tree]

Thank you to everyone for taking the time to reply and for the helpful advice. It would seem that I don't need to worry about it at the moment because when I was out yesterday afternoon, my husband took it upon himself to ring both the transport and the hospital and cancelled both of them! Not quite sure why, despite his attempt to explain it to me, and I was surprised that he had no problem with making the phone calls. Yet another thing to add to the list to sort out.

 

[maisiecat]

Thank you to everyone for taking the time to reply and for the helpful advice. It would seem that I don't need to worry about it at the moment because when I was out yesterday afternoon, my husband took it upon himself to ring both the transport and the hospital and cancelled both of them! Not quite sure why, despite his attempt to explain it to me, and I was surprised that he had no problem with making the phone calls. Yet another thing to add to the list to sort out.

Hi @Bay Tree I feel for you,its extraordinary how despite their cognitive problems they can explode something behind your back. Good luck with your rebook and perhaps his records should note his cognitive problems so to confirm instruction with you.