"Unnecessary upset for a disabled person"

We were at Lincoln County Hospital. I was with H, who is my 1:1. H's fed peg came out on Saturday, this was the 12th time in 5 months.. We arrived at A&E at 3.30 pm and were told half hour to see the 1st nurse. This took an hour.

On seeing the nurse, I explained H's situation and that I'd pushed the peg in to keep the site open. H was due meds - epilim for her seizures and Baclofen to help keep her relaxed and free from pain. These went in her tube along with her feed and water. She was also due water (her drink). I also explained H would need to be changed as she had diarrhoea, we would need a hoist and bed as she is totally dependant on others and incontinent.

We were told as soon as a bed in A&E was available they would take us through. By 5.30, I asked again, and they explained that we needed to change H. 10 mins and they got us in. At 6.30 we saw a doctor and they got us a hoist, which wouldn't go under the bed so 4 of us had to lean the hoist sideways!

After we'd explained, the doctor said they could do nothing until Monday, as they had no radiologist to safely put the peg back in. So I questioned how H would have her water meds feed. The doctor got his senior, as I told him I was ringing the Echo (paper) at this shocking outcome.

The senior came and told me he had spoken to a doctor who would sort us once we were on the ward. H had now gone 7 hours with no meds, no feed and no water.

We got on the ward and eventually at 9 pm and me having quite a lot to say, the doctor came. When I explained what had happened and pointed out H had now gone 9 hours with no meds, feed and water, the doctor said the body can go 4 weeks without food and 3 days without water. I pointed out all we needed was her peg put back in and that the A&E doctor said he had spoken to someone to sort it. He said the gastro doctor will only come out of it is life threatening. So I asked how he knew it wasn't life threatening - he said in his opinion it wasn't.

So I said if H is staying in hospital overnight, have you got a sleep system to keep her comfortable? We have an air mattress! After a lot of unhappy divisions, the doctor said he would get the gastro doctor on Sunday.

H was getting distressed, she'd still had no meds water feed and it was now 10. 30. I asked how she would have her meds etc, a question I kept asking, and he said we have other ways to medicate. They tried nasal, which stressed H, as he raised his voice while trying to put it in like she was deaf. They could also try rectal or by cannula, so I asked how he would feel if someone took his cutlery away and said the only way you can eat is if you're force fed and have a finger pushed up your bum if you needed tablets! He felt I was being unreasonable. After 11 hours, I didn't feel as H's voice I was.

It took an hour for the staff to find a hoist to get H into bed (not their fault, they were lovely nurses). Once H was in bed, they moved us to a side ward and at 1.15 am eventually got a cannula into H's little bent hand. And fluids were put in with meds. I went home at 1.30, leaving H's other carer with her.

On Sunday afternoon, the gastro doctor did come and said he'd put her tube in. The other carer rang me anxious that the doctor said he'd done it not through radio, and was 99% sure it had gone into her stomach, as he'd drawn fluid (stomach acid) and was sure it was in there. So I spoke to him by phone very concerned, as Hs peg goes into her jejunum, not her stomach, and we have been told should be done by a radiologist.

The dr informed me he'd read H's notes, he was a very experience dr and knew what he was doing, and that her peg went into her stomach and connected to her jejunum. This of course was wrong, but needed confirmation from H's Mum, who was away (I was right though).

I have a loud voice anyway and with my anxiety for H the dr said I shouted at him. He said this to H's other carer, who's very quiet and prob he felt he could intimidate, as he knew I was having none of his nonsense.

I was back at work Monday by now H's brother was at hospital, but it was still Monday afternoon before H had her tube checked in radiology and clarified that it had gone back into her Jejunum not her stomach, and if the dr drew acid from there then surely there's another problem cos it shouldn't be acid.

This is a classic example of unnecessary upset for a disabled person who has no voice only her caters. No toilet (care) facilities, Going 11 and half hours without feed, water, and meds that keep her comfortable. No hoist. No proper bed facilities. And a total lack of understanding from the Drs.

This is a massive problem that is faced by our disabled families that have left children's services at 18 and gone into adult services to be basically left or pushed to the side. Everyone should work with these amazing young people and realise that outside they appear disabled but underneath their trapped bodies is a real loving funny person with more about them than a lot of able people!

Many thanks for allowing my voice