Parents, carers and disabled parents
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Carers need care themselves

JennyFJennyF Member Posts: 14 Connected
I'm responding to the article in your newsletter about carers, how they are treated and their mental health. The stresses of caring for a teenager with undiagnosed brain damage, sight problems and PTSD drove me to become a self-injurer. Neither of us had much support from our GPs. I was unable to admit to any problems as the knowledge would have made my child even more suicidal. Fifteen years on my child has partially recovered and lives independently. As things eased, I picked up the phone to the Samaritans - telling  someone about the self-harm enabled me to stop quite quickly.

The single greatest contributor to my mental distress was not my child's behaviour or the difficulty of looking after them, but the task of trying to source help from the agencies that are supposed to support us. Again and again I was told that this or that facility should be available to us, only to find that it was not available in our area/not available to 16-18s/ not available to civilian victims of PTSD (only military), etc, etc. I have since discovered that child and adolescent mental health services in our area were particularly poor.  Social services were not interested...although no educational establishment would take my child due to 'behavioural problems'...and on and on. I was ground down by this, and like the author of the article, lost any sense of self-worth. It became as though we didn't exist in the same universe as everyone else - because everyone who had not tried to get help thought it was available.

I have come to believe that the biggest help for carers would be to have a one-stop shop for services for themselves and their cared-for person, and to be assigned an advocate or other knowledgeable helper who could do the ringing round for them. Some might prefer to do it themselves, but that's not the point. When you're struggling all day and half the night with a very sick family member, you shouldn't be expected to spend hours trying to find help...and being turned away. It's devastating.


  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Yes thats so true fighting to get the help they so desperately need is a nightmare.sorry you don't fit the criteria is what i hear so often. I agree should be much easier to access the services we need. 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 8,052

    Scope community team

    Thank you for this @JennyF.
    I was always left so frustrated trying to access any sort of help for the person I cared for. I probably wasn't alone in taking it quite personally. It was a war of attrition and one I hadn't the time and energy to always win. Every single failure only seemed to underline just how ineffective I was as a carer and it took a real toll on my mental health. 
    Like you say, being a carer in itself isn't necessarily the challenging part, instead it's the fight to access support and the hoops you can be made to jump through.

    Really pleased that you reached out to the Samaritans and they were able to help you though and it's fantastic to hear your child is now living independently. :)

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