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A Little Research to Help Carers!! - Carers UK Forum

A Little Research to Help Carers!!

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I cared for my grandmother when she was dying from Bowel Cancer. It was a very scary time and at that time I had no idea of where to start or what to do, what help was out there and how to look after her in the best way. Since then I have started my own domiciliary care company. From my own experiences and from talking to the family members of people who we care for, I am of the opinion that people who have been “thrown in at the deep endâ€
District nurses training carers about care?
Bowel care training for me, by the district nurse, consisted of "You take the top off the enema tube and just pop it in"......

Manual stimulation for evacuation training consisted of ................................................. nothing - no guidance, no help, no explaining, NOTHING. The only 'training' I was given was by hubby, who just happened to be lying on his side in bed, funnily enough, trying to tell me how to do it ................!

District Nurses have never, ever trained me to do ANYTHING. Have never ever spoken to me about the above and how to do it properly or safely. Between the PAs and myself, we have always done the above, well, if hubby needs to 'go', he needs to 'go' NOW and if it happens in the middle of the night, or in the middle of a museum (oh, yes), then where are the District Nurses THEN, eh?

I have never, ever had any official training in ANYTHING, apart from Assisted coughing leaflets from the Spinal Unit.

I have always had to work everything out for myself, or with hubby's spoken guidance, because when he's lying on his side, needing his poo getting out, it's rather difficult to show me how to physically do the internal manual stimulation.

And if I sound so cross about it, that's because I am. Care workers and PAs are paid to be trained in all these 'unsavoury' caring necessities - WE ARE NOT and are lucky if we get training in anything at all. Nobody asks us if we're all right, or if we're still coping with bowel days, we're left on our own and nobody asks us anything. I could be feeding hubby deadly nightshade for all they know.
Wow, thank you for your heartfelt reply. I'm so sorry that you have been let down in this way and I can tell you I had the same experiences which is why I have come up with this idea. I don't know where you are based but I am trying to get together a few people who could authorize the training as I discussed in my initial note. I wondered if you might consider letting me read them your mail so they can see how you feel? Or perhaps if you are anywhere near East Yorkshire, perhaps I could invite you to the symposium? Either way, please let me know. Debbie
It just seems to be a case of 'get on with it' and learn as you go............yourself.
I totally agree Myrtle. It is an area that seems to have been seriously overlooked by governments, safeguarding panels, the nhs etc.. I have to say that one of the main objections from professionals who could promote and encourage this training is that carers such as yourself wouldn't be interested in doing any formal training even in awareness. As a carer myself I disagree with this but am I in a minority?

Again, myrtle, if you are interested in a symposium to speak about what you would like to see and live anywhere near East Yorkshire, please let me know.

Debbie x
Sorry Debbie, I live in Devon, but I would be interested in hearing what was said in the symposium.
Ok no problem. If I get enough interest I am no hoping to hold this symposium on 16th December 2010 in Hull with the first course commencing early 2011. Keep your fingers crossed for us. Also, if there is anything else you would like me to bring up, then please let me know, otherwise, I will be sure to post the outcomes as soon as they happen. I need as much information and comments from carers as I can get to pass it on and explain the real need out there!

Debbie x
Carers will turn up to almost anything between 10:00 - 16:00 as long as its free, they get good notice, they can get respite, and there is a decent lunch provided. They aren't that fussed by training per se because by the time they know they are carers, they have already aquired most of the caree-specific skills they need through trial and error. They only go to network with other carers; the trainers get a polite clap, that usually all. And every carer/caree relationship is unique, so why turn up to a training session where 90% of the content is not relevant to your own unique situation?
Most training specific to your situation should be provided either by the nursing staff on the ward prior to discharge, the district/community nurses, or the Occupational Therapist.

And sometimes - impossible to say how often - that simply doesn't happen.
I'm in Shropshire, Debbie, not as far away as Devon, but still a fair way away from you. No go, I'm afraid.
However, feel free to show my comments about 'help'. And on one occasion, in the early days, I was really worried, because hubby had got piles, so I called the doctor. She just kind of smiled and said there's just a few piles and prescribed some cream.....

I'm a (was) secretary, I am not a nurse and I had never seen or heard of piles before, didn't know what they looked like, or what they were or what to do with them or whether they were something to do with spinal injury......! How was I supposed to know what the lumps were, which were blocking my 'way in'. I was really worried and it was treated as if I SHOULD have known what they were.

Like I said, I'm NOT a nurse and have never looked after anyone as a carer before, I don't know all there is to know about medical stuff, nor do I want to, but it's assumed that just because you're a carer, that you know all there is to know about caring matters, medical matters, medicines, physiotherapy, wheelchair parts and so on. I don't.