Had pre-treatment call and told I can't be with mum during treatment

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Mum is due to start Folfirinox next week and they are not allowing patents to have someone with them.

My mum is 76, she was referred for onset dementia early Feb, has hearing problems which she is supposed to be getting a hearing aid for unfortunately, she had an appointment for this in May which we were away for and a re-booking in August which again we were away for. 

She cannot hear what people are saying, forgets very easily and also goes in to a panic mode where she can't take information in. I take in all information for her and relay it in different ways to try and help her understand. I have to repeat information constantly and in different ways depending on how she is each day.

I explained this on the call but was told that since COVID they are not allowing anyone to accompany patents. I am so anxious about her going there alone and later in the day after telling her she started to talk about not having treatment at all.

I rang our care navigator yesterday to express my concerns and she is going to try and push to allow me to be with her for at least the first treatment. 

Has anyone else had this issue or is it just our hospital? 

  • Hi  

    Yes this is quite common.

    In your position I would note that your mother has a disability that she has hearing difficulties and early onset dementia and use the phrase "She requests as a reasonable adjustment that I be allowed to accompany her". Note you will wear a N95 face mask is required and of course hand sanitiser and all the rest as mitigation against the risk of covid infection. 

    Hope that helps to unlock the door for you.

    Hope that helps.

    <<hugs>>

    Steve

    Community Champion Badge

  • The unit where I had my infusions had several patients with either a friend or relative with them. I almost felt like the odd one out! There was an elderly lady who had her daughter with her, probably for similar reasons to yours. Push really hard! 

  • I wasn't allowed to have anyone with me when I had chemo but you have extenuating circumstances so I would push things 

  • My job is as an independent advocate for unpaid carers.  You are your mum’s unpaid carer, she has a qualifying disability under the Equality Act and by law, they HAVE to make the reasonable adjustment.  I would tell them they have to make reasonable adjustments under the disability discrimination section of the Equality Act 2010.  I challenge decisions like this all the time, and win.  I would put it in writing so you have a paper trail and they are far more likely to agree if it is in writing.  Very best of luck.  What area of the country are you in?

  • I tried to edit that.  It was meant to start that my job is I am an independent advocate etc etc