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Cress Community member Posts: 1,012 Pioneering
As some here may know I have an adult son with learning difficulties, autisim and epilepsy.
He's in supported living at the moment.

Because of his severe anxiety his gp prescribed 2mg of diazapam on an 'as needed' script. Which helped.

Many years ago, he was up for attending a college specifically for people with additional needs and on his first few taster sessions I gave him a diazapam before he went to help him through.

I was furious to then recieve a letter from the head asking to see my son 'without the diazapam'
First off I wrote that if she looked in on him anytime after 11am she'd see what he was like as it would have worn off by then, secondly I wrote that his diazapam was just as much a treatment as his epilepsy meds, as increased anxiety always resulted in more fits and what she was asking was akin to asking to see my son without his epilepsy meds.
Thirdly and most importantly, she wasn't his gp she was the Head and as such had no business in my sons use of meds. Imo

Whilst in hospital on a mental health ward he was given his diazapam as and when he felt he needed it and they felt appropriate.

Now in his supported living set up the manager informed me that they prefer to use coping strategies instead of diazapam. At first, I thought this was fine and I had to take a step back.
But since being there he has been self harming, deep scratches along his arms and I've been told on many occasions now that they were going to look into prescribing something for his low mood and anxiety.
He's had med reviews but still no mention of if and when they might try meds for him.

So I'm going to be questioning his social worker as to whose role it is to decide if he should have a prescribed med or not.
I'm thinking it surely isn't the manager of his supported living arrangements but I need to sort this out.

To add insult to injury his waking care worker keeps him up at night after falling asleep with the TV volume high and snoring her head off.

Before he had a TV in his bedroom he said the waking care worker kept telling him it was time for bed and he looked tired and I jokingly said 'she wants you out the way so she can have a kip'

Rant over, just wanted to vent  :/


  • Sandy_123
    Sandy_123 Scope Member Posts: 33,059 Disability Gamechanger
    Hi @Cress I would definitely sort out the over night worker. Swap her for another. Speak to who employs her about it. 
    Also I would of thought it was the gp who decided on your sons  medication.
  • Cress
    Cress Community member Posts: 1,012 Pioneering
    Yeah @Sandy_123
    I'll be calling his social worker 

    The problem with his meds is the diazapam being on an as needed basis then its left to the discretion of the patient and/or carer.

    I need to find out who officially has this role to decide that he can have so many but not more then.
    As I don't think it should be for a manager to simply impose her will re his meds.
    If this is backed up by a medic of some sort then fine, I'll have words with them.
    Swines  :D
  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,496 Disability Gamechanger
    Diazapam isn't meant to be a regular or long term solution so that's probably why they'd prefer to use alternative methods.  

    Would he be able to ask for it when needed or are they relying on someone else noticing and suggesting it?

    It does sound like a more regular anxiety med might be useful as well.
  • Cress
    Cress Community member Posts: 1,012 Pioneering
    I'm aware that diazapam isn't a long term solution but imo if his gp says it's OK to use as needed then it should be used along with coping strategies etc 
    But the manager has refused to give it at any time...as I said, if this was on medical advice, fine, but if its not and just an approach she has decided to take then that is not OK imo.

    I've tried for years to have him try a regular daily use anti anxiety but he's always refused ...I'm hoping they can get him on something to help, along with therapies that would hopefully at some future point enable him to get by without the meds.
    I'm a great believer in not over prescribing, but I also believe if the need is there and can help then they should be used.

    I wouldn't advocate the use of these kind of drugs without any kind of additional psychological help.

  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,496 Disability Gamechanger
    Yes, I totally agree he should be allowed it when necessary. 

    Is there a particular reason he refuses daily ones?  I'm at the point where I can't make any improvements (or even remain level) without meds now, but it's fears around side effects that prevent it in my case.  I've now been prescribed an anti nausea med in the hope I can take that before an SSRI...but that's been a battle all week, literally getting one drop on my tongue causing hours of heightened anxiety after.  Extremely frustrating lol.
  • Cress
    Cress Community member Posts: 1,012 Pioneering
    edited October 2021
    He thinks they’ll turn him into a zombie.
    ive tried to explain that although there may be some initial side effects there also may not be and that he won’t be feeling like a zombie, he’ll just feel like himself, but on a good day.
    It’s so upsetting and frustrating  seeing how anxious and upset he gets and knowing a pill along with appropriate psychological help could achieve some peace of mind for him finally.

    Well done! I hope that’s not sounding patronizing but really well done on trying some meds, hope it helps you find some peace of mind as well. :)

  • niknak7278
    niknak7278 Community member Posts: 74 Courageous
    Hi @Cress I was in a similar situation earlier this year, whereas my daughter was in respite while suffering from psychosis.  She was prescribed two different PRN’s whilst in their care, but as the support workers didn’t know my daughter they didn’t know the markers to look out for, and would often leave it too late before administering the dose.

    My problem was and still is that I never applied for LPA, whilst she could consent.  Now she is unable to consent, so I’m her “nearest relative”.

    I contacted MENCAP who referred me to Access Charity who provided representation with Social Care etc.  There were Best Interest meetings and a Care and Treatment Review.  

    My daughter returned home mid June, but whilst she was staying there she absconded every day, tried jumping out of a window and self harmed.  Half of what she did wasn’t reported back to social worker.  She was supposed to have 1-2-1 care 24/7 but she still managed to use the unit phone to call 999.

    Sounds like your son needs a crisis plan.  Whoever his care provider is would have to adhere to that.

  • Cress
    Cress Community member Posts: 1,012 Pioneering
    edited October 2021
    thank you so much for sharing your experience along with some useful pointers on where I can get help if this situation isn’t sorted properly.
    That’s a real help to me and very much appreciated. :)
    also, I hope your daughter is getting the right help now and doing better.
  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,496 Disability Gamechanger
    Cress said:

    It’s so upsetting and frustrating  seeing how anxious and upset he gets and knowing a pill along with appropriate psychological help could achieve some peace of mind for him finally.
    I can totally relate to that from the other side...I know my Mum wishes I could take meds and get decent therapy.

    I still can't get through the side effects though.  I don't know how to move 'through' them and there doesn't seem to be any help for it either.  Just basically told to 'deal with it'...but if I could do that I wouldn't be needing anxiety meds in the first place!  :|
  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,465 Disability Gamechanger
    I just wanted to say I'm really sorry that you and your son are going through all of this @Cress. It does sound as though you have a few ideas on people you can speak to and avenues to follow, which is positive. Please do keep us updated, and let us know whether you need any further information.

    Are you coping okay throughout all of this? I can only imagine how stressful it is, and it's important that you look after your own mental health too. 
    National Campaigns Officer, she/her

    Join our call for an equal future.
  • niknak7278
    niknak7278 Community member Posts: 74 Courageous
    @Cress Thank you and your welcome.  

    She’s now receiving treatment and support from our mental health team.  They do telephone and home visits, and  our LD team have nothing good to say about them which is ironic as, the MH team have been so supportive during the last four weeks.

    I hope you manage to resolve things to your satisfaction.

    Best of luck to you and your son.


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