If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Using Direct Payments when suffering with severe ME

cap413cap413 Posts: 3Member Listener
Is anyone experiencing the same thing as me, having severe difficulty utilising your direct payment because of your ill health?  My ME is so severe that I’m bedbound and I can’t cope with having carers here for hours a day helping me prep food, my care plan says I can have 2 hours a day of care.  But this exhausted me to the point where it’s actually making my ME worse.  Also my carers don’t understand the condition and make jokes and nasty comments to me which make me more unwell and anxious about care.  I also get social time but the ME is so severe I’m bedbound and talking exhausts me, and they’ve said I can only use this to employ a carer to sit and chat with me so again it’s pointless.  So I’ve not been able to use the money in my direct payment account at all.  I have said to my social worker that having meals prepped and delivered would help me a lot and remove the need for having a carer here two hours a day.  She has said I can’t use a direct payment to pay for food.  But this is a service that meets my needs....I’m not using it to pay for my weekly shop.  Sorry this is a long message.  If anyone has any similar experience please let me know.  

I am currently undergoing a complaint with the ombudsman about my Disability Related Expenses as the council also wouldn’t accept any of them.  So I’m really not having a good time with the council at all and I’m finding them to be really unhelpful.  All of this stress is making me so much more unwell and I’m wondering about cancelling the care plan altogether.  

Thanks for for any help you can give.  



  • poppy123456poppy123456 Posts: 9,161Member, Community champion Brian Blessed

    Even though in your care plan it says your carers are to come to your home to help prepare and cook your food, having meals delivered to your door is not an expense that direct payments would cover, unfortunately.

    Do you claim PIP or DLA? if so then this is there to help with the extra expense your disability causes.

    Here is a link that explains what direct payments are used for.

  • cap413cap413 Posts: 3Member Listener
    Hi, thanks for your reply.  If making food is an identified need on my care plan, wouldn’t the council have an obligation to meet that need?  I’m just struggling as I’m finding direct payments to be very rigid and the care act says that councils need to be flexible in meeting users needs?  
  • poppy123456poppy123456 Posts: 9,161Member, Community champion Brian Blessed
    edited December 2018
    Yes but not to pay for the actual food itself.
  • cap413cap413 Posts: 3Member Listener
    But how do you distinguish between the price of the food and the price of preparing and cooking the food for me?  
  • poppy123456poppy123456 Posts: 9,161Member, Community champion Brian Blessed
    The difference here is that you would buy the food with your own money for someone else to prepare it for you. You will then use the direct payments to pay the person preparing the food.

    Using the direct payments to buy the food that's already prepared isn't what direct payments is to be used for.
  • markyboymarkyboy Posts: 351Member Chatterbox
    You need to contact the ME association who will give you loads of help
  • Pippa_ScopePippa_Scope Posts: 5,858Member Brian Blessed
    Hi @cap413, thanks for sharing this with us. I'm really sorry to hear how tough you're finding things at the moment. It can be really frustrating to feel you're not being heard.

    I would second @markyboy's suggestion of contacting the ME Association, to see if they can help you with this. Here are the details of their ME Connect Helpline:

    If you need help, and someone who will listen and understand, then please call us on 0844 576 5326**
    If you cannot get through immediately, THEN HANG UP AND TRY AGAIN LATER! Don’t run up the cost of the call by holding on for more than a few rings.
    The ME Connect telephone helpline is available every day, during the hours of 10am-12noon, 2pm-4pm and 7pm-9pm.
    Or you can contact us by email at any time, and we will respond as soon as practicable.

    I really hope this can help move things forwards. Please do keep us updated, and I hope today is as kind as possible to you!
  • joanna319joanna319 Posts: 5Member Whisperer
     Hi Natalie, I totally understand where u are coming from..as a fellow severe ME sufferer who struggles with the ‘demands’ of dealing with Direct Payments and people coming in to ‘help’. It has taken over a year for me to find someone who can give the help I need, without needing draining input from me. My only sugggestion is that you look for a different agency/Carer, as it sounds like their attitude towards you is doing more harm than good. It should be possible to find (eventually!) someone who can be supportive, and be able to come in to do what you need them to do (shop & prep food, cook meals for the freezer) on their own. My Carer only comes in for 2 hours every other day, but she lets herself in and gets on with things while I stay in bed. There is a regular routine of ‘normal’ jobs, and I write notes for anything else that I would like to be done that day. She is sensitive to the different limits of my abilities and so will chat on days I am able, and leave me alone for those days I am not. Finding the right Carer is key, and a lot of hard effort when you are not well, but in the end makes a big difference to how well you can manage and feel about yourself. One thing I did do when I started with the agency was to email the ‘Guides for Carers’ from the ME association with a ‘factsheet’ of my dis/abilities to be used to educate them about the condition and how it affects me. I got sick of having to always explain and justify myself! All the best, Jo
Sign in or join us to comment.