Tuesday, March 07, 2006

UK healthcare system

Didn't post last night as I was so very tired again. Each night I'm driving home from Mum's in a daze. I put the radio on so that I have something to focus on (other than my thoughts) and just concentrate on the road.

Dad was very distressed when we saw him. I think that the doctor who saw him in the afternoon did not have, as it were, a good bedside manner and only succeeded in scaring Dad about his condition, and the op. He said Dad would go down in the morning for his laparotomy and that it would be decided what to do after that. Dad was therefore to go nil by mouth as from 4am this morning.

Just heard from Dad - they have now told him, this morning, that they will operate instead on Friday. No real justification that I can see was given, but maybe I'll find out more when I go in. In a way, it seems better as they had been talking about "emergency op" and "high priority". Now, putting it as a planned procedure days away, it seems less scary.

What I have found unbelievable though, is the hospital food. We told them upon admission that Dad had (literally hours previously) been diagnosed as having Ceoliac disease. Bear in mind this was a man suffering severe dehydration, malnourishment, chronic pain from having been eating gluten, plus a duodenal ulcer, and mouth ulcers.

First off he was on a drip, so it didn't matter. However, once he went on solids they were sending up the most appaling food. Ok, here in the UK hospital food is notoriously bad (despite very public policy changes, new ideas, new charters...). But according to the hospital kitchen Dad was the only one in the hospital with ceoliacs. They had to order in a special diet. In the meatime, he was offered jacket potato with beans two days running, no veg, no fruit, no complex carbohydrates.

Now, apparently, he is on this "special menu". Last night he was offered chicken curry. Ok, so they claim it is guaranteed gf. But curry? For an ulcer? For someone with a severely damaged gut and possible intenstinal cancer?! You don't have to be a nutritionist to realise that sucks. For pudding he was offered rice pudding - which Dad hates, and anyway is milk based which he needs to avoid as a recovering ceoliac. The food manager claimed Dad would be given a choice - but I don't think you can choose between one option. There was jelly on the list but he was told he couldn't have it. This is the same jelly they've given him 2 days running..

We've complained, been "reassured", again and again but nothing seems to be improving. I'm talking about going to the local press but Roarke says he'll give the food manager one more chance to explain this.

On top of that, Dad (understandably getting his head around the change of diet, health and the news about the cancer) took a biscuit off the drink trolley in the morning. The poor guy was soon in agony again. I think it is the responsibility of the hospital to ensure all staff bringing him food/drink are properly trained. There is a huge sign taped over his bed saying gluten free, and a copy of the restaurant card I did for him, explaining what that means. No one should have offered, or allowed him the biscuit in my opinion.

Now you can see why I was so tired and too wound up to post last night.

This morning I am catching up on emails, writing this, then off to catch up on shopping/bill chores. We are then going to visit another HE family, then all going on to Monkey Bizz for the regular meeting. After that I'll drive straight to Mum's and go in to see Dad, as Roarke will have finished work and can take over with the boys.

On the HE front, I had some great stuff through recently, free, that I'd recommend to any UK home educators - check out Flour and Grain. It is a great educational site, with loads of packs to download or order for free. There are online resources too that my US readers may find useful.

With regards to the gf diet for the boys, the main difference that we had noticed was with S. He has been less "wild" - his sudden movements, yelling, "crazy" moments had eased. He sat still longer, was generally quieter in speach and gentler in movements. Also, he seemed to be thinking clearer and more logically. We'd seen little difference in J who was, however, trying to control his temper and outburst by sheer will power.

However, I've noticed that since S's behaviour has reverted over the past 4 days, J has stopped "trying". So maybe it WAS helping him too - giving him the ability to exercise his own will over his behaviour rather than flying straight into his rages.

So now we need to get to the bottom of the change. Obviously, the family is under stress at the moment and I can't rule that out as the possible only/main cause. But we have also changed their cereal (see previous post about Kelloggs), and looking at their squashes.

One of the hardest things is that we were already struggling financially, but with Roarke working early shifts to try and allow me time to visit Dad, plus having not worked his 4 rest days, we are even further behind. So, to be able to pay for the more expensive gf stuff is hard. Its even harder having a freezer/cupboard full of gluten products that I can't use - but can't afford to replace.

1 comment:

Alice said...

Hi,
Just sending you {{{Hugs}}} and prayers. My Dad is also in hospital though we are past the emergency stage so I do feel for you. I hope the hospital gets its act together about his diet - it's amazing how little provision there can be for specialised diets. I though it was lovely that you were able to bring him GF brownies so he can have a treat.
Go easy on yourself, if you need to take the HE slowly for a while you can make up the time later when there are fewer pressures.
Alice (flapjacks)