Hi, my name is Carly40!

Carly40 Community member Posts: 1 Listener
Need advice please. I was on PIP and on ESA currently but they sent me a reassessment booklet for PIP to fill in and invited me to a face to face interview. I suffer from severe bowel problems have an ileostomy bag and have had 7 surgeries on my bowel, the last one being in Jan 2019 I was rushed in as an emergency and nearly died. As a result of all my surgeries I have short bowel syndrome abdominal adhesions I'm on morphine daily for pain and in the future been told I might not be able to eat and have to go on TPN feeding due to my bowel being badly damaged. I also suffer from bladder weakness as a result of the surgeries and receiving treatment for this and I suffer from severe depression and on antidepressants. My bag leaks all the time have to change my clothes 4 times a day and my bedding die to leaks and my stoma is non stop pouring out liquid due to how little bowel I have left. After my surgery in jan 2019 I was in hospital from jan to april recovering from emergency life saving bowel surgery. My assessor gave me 2 points in total for whole assessment and those 2 points were for toileting needs. I have put in a MRN and I'm going to appeal and go see my MP and get letters from my GP and consultant. Is there any advice you could give me moving forward? Thanks


  • thespiceman
    thespiceman Community member Posts: 6,377 Championing
    Hello @Carly40   Pleased to meet you .

    Thank you for joining and sharing.

    Sorry to hear what you are going through.

    We are a supportive community, friendly care and concern. Offer compassion, empathy and sensitivity.

    I am one of the team of Community Champions.  We support, advise and offer guidance to members.

    Please if I can offer the following information and advice.

    This organisation may be able to help with your condition you have . Informative and useful website.


    General Helpline 01926 357 220

    Please can I also suggest speaking to mental health charities.

    Offer advice , support on a number of issues and are very useful, helpful in situations like this. With benefits.

    Form filling in, assessments.  Offer health advice, well being and looking at floating support to maintain and guide you with your mental health.

    Accept clientele with other conditions and disabilities as well mental health. Signposting to relevant support with the in the charities or outside sources, worth thinking about.

    I have used all three and have helped me a lot.




    Might not be in all areas.  You can self refer or speak to your GP.

    I am also going to tag my friend @poppy123456 member of our team see if anything else on benefits can advise on.

    Lady has exceptional knowledge on benefits anything to advise you on.

    Please if I can help with anything have diet, nutritional qualifications could be useful for any advice,. One other have you contacted your Community Health Unit.  Your local County Council

    They have a wellbeing service . I used them after addiction. Helped me to adjust and cope with my health.

    One to one support, lots of information relevant to health.

    Please take care if you have any questions please ask you not alone.

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • poppy123456
    poppy123456 Community member Posts: 57,295 Championing
    Thanks @thespiceman for the tag,

    HI and welcome @Carly40

    I'm sorry to hear this. The 2 points you scored for toilet needs are correct, unless assistance is needed to change your stoma bag and then it should have been 6 points.

    The advice you've had that you might not be able to eat in the future will not score you points for activity 2 taking nutrition.

    Having to change your bedding is not part of any of the descriptors.

    Point could be scored for dressing/undressing, washing/bathing

    For any other activities it depends how your conditions affect you.

    Most MR decisions remain the same so it's likely you'll have to take it to Tribunal. Waiting times are huge across most of the country and some are waiting at least a year for a hearing date. If it does get to Tribunal then i'f advise you to write your submission stating where you think you should have scored those points and your reasons why. Adding a couple of real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.

    Good luck.
  • janer1967
    janer1967 Community member Posts: 21,964 Championing
    Hi @Carly40 Welcome to the community I am sorry to hear about your condition and everything you have been through. I see you have been given expert advice already. Good luck with your MR amd keep us updated on your progress