CoC - Now have a feeding tube

Hi everyone,

I'm looking for some advice before I make a decision. I have an existing PIP award (Enhanced Daily Living, Standard Mobility), but my health has declined significantly, and I now have a J-tube (theraputic feeding tube) and fed by a feeding pump

I know this is a COC , but I want to be sure I have a solid case before triggering a full review. I'd be grateful for your thoughts on whether these changes sound significant enough, especially focusing on the reliability and safety criteria. I am visited by the Dietitioins every two weeks and they have suggested a package of care to social services.

Here are the main points I'm thinking about:

Impact of my Feeding Schedule: This is a huge part of my new reality. I am connected to my pump for 8 hours every single day, in two fixed blocks (four hours in the morning and four in the evening). The medical advice is not to disconnect during these times. This severely impacts my ability to do basic things repeatedly or in a reasonable time. For example, I can't just take a shower or get dressed easily in the morning, and preparing an evening meal is impossible during my feed. This feels like a major change that affects multiple daily living activities.

Taking Nutrition: Managing my J-tube is complex, especially administering medications which have to be crushed and flushed one by one. I don't have a partner or a formal carer, but friends help me with the setup when they visit. The key thing is that the need for assistance is there every day to do it safely and correctly, even if I don't always have someone with me. Without their help, I'm at risk of making mistakes or blocking the tube.

Mobility - Moving Around: My current award is 8 points for moving 20-50 metres unaided. My argument now is that I can no longer do this reliably.

The pump and backpack are an essential "aid or appliance". My main point is that this aid makes walking less safe due to the constant trip hazard from the tubing. The weight also causes significant fatigue, meaning I can't walk that distance repeatedly.

Because of this, I'm considering arguing for either 10 points (moving 20-50m with an aid, but not safely or repeatedly) or even 12 points, because the combination of my condition and the burden of the pump means my truly reliable walking distance (what I can do safely and more than once) is now under 20 metres.

Mobility - Planning Journeys: I previously scored 0 points here. Now, I can't leave the house without a full medical kit (spare tube supplies, syringes, water, etc.).I have had numerous stoma infections and have constant fatique The thought of having a blockage or leak in public, combined with the strict feeding schedule, causes me significant anxiety. I'm hoping to argue that this meets the criteria for "overwhelming psychological distress" and that I need someone with me for practical and emotional support to manage these risks.

Does this focus on safety and reliability, and explaining the need for help even if it's not always there, seem like the right way to build a strong case? I'm worried about the risk of a review, so any experiences would be really helpful.

Thanks so much for reading