Carers UK Forum

hi

my daughter has severe learning difficulties, and following a brain haemorrhage 3 yeas ok, has no mobility and has to be PEG fed. she lives in her own apartment and has 24/7 care. some of the time double ups. she gets NHS funding and employs a care provider.

however, due to problems with her present peg, hospital may have to change to a different type of feeding peg, and some of carers think its too much responsibility, and say they will not be able to use it. even with training.
she has had the present carers for many years, so we are desperate not to loose them.

my worry, which i may be overly worrying about ,is that should carers not feel able to use the new Mic-Key feeding tube, would my daughter be moved to a nursing home. and thats the last thing we want for her.

has anybody had any experience of this sort of feeding tube, and is it a difficult as it sounds in the description.

My only experience of peg and nasogastric feeding is through school. I suspect though the issues are similar- some staff are more anxious re change and responsibility than others; some are more easily swayed/ influenced by the concerns of other staff.

If the training is similar to at school, staff will only be signed off as competent when they are not only able to perform the procedure but also feel confident to do so. Reassuring staff of this should help. Careful rota planning ensuring the less confident staff are rostered when a feed isn’t needed or in a double shift for e.g.

Have you spoken to the managers of the care provider? It is their responsibility to ensure your daughter has sufficient staff to cover her care.

Melly1

How is her care funded, Social Services or NHS Continuing Healthcare?

her care is NHS funded.

Then a possible solution would be for the NHS to give the carers special training, maybe initially with a nurse supervising.

yes, i will request that.

i think its just an initial panic situation with them, once they calm down and are trained and trained again if necessary, then they will relax.

thanks.

I wish you all the best on your decision. It is a tough move to make. The best thing to do and explore your options. All the best for your daughter, with the right treatments she can have a more easier and supportive lifestyle.