Parents, carers and disabled parents
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mapmap Member Posts: 1
my 46 year old daughter suffers with severe pain from scoliosis.
our problem is how to communicate to carers when she is in pain as opposed to when she is communicating something else.
she has a very severe LD and communicates by body language mainly.
we have written/re written many care plans, but no matter how hard we try, there are always those that think they know better and withhold any top up pain relief because they think its something else. e.g. behaviour, constipation, just dislikes where she is. the drs. have given the go ahead to use this top up pain relief in addition to her regular meds if necessary, so we are not giving this without guidance. any ideas would be great.


  • GinaSGinaS Member Posts: 79 Listener

    communicating pain is always a tricky one; I do have difficulties understanding when a (non verbal) person indicates pain. However, I don't believe that staff have any right making that decision of behalf of your daughter!

    May I ask you what information exactly the care plan involves? Maybe including a section about the signs that your daughter exhibits when she is in pain would help?

    I would also ask 2 things:

    1) a protocol/guidance from the doctors when and how to administer these meds as PRN (I assume they are pain killiers?)
    2) a referral to the local community LD team, either a Psychologist/ Behavioural Support Practitioner and a SaLT (Speech and Language Therapist) could help you and the staff team.
  • BombproofBombproof Member Posts: 3
    Take film footage of the body language she exhibits when she's in pain and make sure those caring for your daughter have seen it with you on hand to give a translation. Photos and written descriptions are ok but the actual film hits home more effectively.
  • GinaSGinaS Member Posts: 79 Listener
    I agree, a video footage is a very good idea and very powerful tool - it can be used to train the staff team!
  • GrampsGramps Member Posts: 1
    Hi, a low tech solution that's easy to access is the DISDAT tool developed by Northgate and Prudhoe Hospital staff in the late 90's. Have a look at or google DISDAT - it's free to download and use. Hope it helps.
  • KarenGKarenG Member Posts: 7
    Hi, thanks for all your help today. I have a 14 year son with Down syndrome, autism and and a severe learning difficulty with poor speech and language. We have lots of ongoing issues with behaviour but the one at the fore at the moment is having his hair cut. Like alot of Down sydrome people he dislikes it intensely and gets very very upset, he doens't like the sound of the scissors, an electric razor is completely out of the question, he doesn't like the hair falling on him, he doesn't like the feeling of his hair being cut etc. Uptil now with alot of perseverence I have managed to get a basic hair cut done but now he's become more teenage like he flatly refuses,and won't allow me to get near him. My husband has suggested that we get sedatives from the doctor but I'm not so sure. Any advice or do you think a sedative is a valid answer to a major problem that is going to be ongoing?
  • GinaSGinaS Member Posts: 79 Listener
    edited February 2015
    I think that using sedative is the last resort after you've exhausted all other options.

    It might worth trying a basic desensitisation program for having a haircut. You can download some pictures from the internet and present them as an activity. These might initially involve a shampoo, a pair of scissors, then having your hair washed, etc.

    For a child that is sensitive to the buzz sounds of the clippers or the snap of a scissor, try using soft, flexible ear plugs. If he doesn't like the hair falling on him make sure sure he has a cape, sheet or towel draped over him. He could cover his face with a hand towel to keep those fine, cut hairs off his face. Also, if he's sensitive to strong smells you can try unscented shampoo

    Many parents have found that it can help for a child to watch another person having their haircut so they have an insight into what to expect. This could include videoing the haircut. I found 2 videos used with autistic children:

    I also found this useful guide, it might give you some ideas.

    They also have some pictures to help you if you want to make a visual schedule!
  • KarenGKarenG Member Posts: 7
    Thanks very much we shall try those measures first.
  • GinaSGinaS Member Posts: 79 Listener
    Stay in touch and let us know how you are getting on. Gina
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