I think this is how all genuinely disabled people feel. People don’t realise how brutal the PIP assessment system is unless they’ve engaged with it themselves. Public opinion seems to be that PIP is an easy benefit to get - all you have to do is limp in to the assessment or pretend ‘mental health’ and you’ll be handed money. Anyone who has ever been assessed knows from experience that that is just not the case.
PIP claimants are up against a brutal system that picks apart their condition and forces them to think about what they can’t do, rather than what they could do with an award of benefit. That’s never made sense to me, because PIP and DLA before it are benefits meant to support people to be able to be more independent. Hopefully the planned overhaul of the assessment process will take that more into account in the future.
One of the things that’s being looked at is the quality of the decisions. And that leads back to the assessors, so hopefully the emphasis will be on making sure that they are appropriately qualified and have experience in the field of disability, with specialties which can be used to assess specific disabilities and conditions - not just recruited, given a few days training and unleashed on disabled people as is happening now.
The review process is a bit simpler than the initial award process. You’ll get a form on which you’ll be asked to resubmit details of your condition and any changes since you were awarded benefit. If your condition has worsened you need to be clear about what aspect of your actual condition has deteriorated and how that affects your ability to carry out the specific activities assessed - be clear about the distinction between how you managed before the deterioration, and how you manage now, and give details of any extra help you need. For example if you managed an activity with an aid or appliance last time, and you now need help with it, you need to say so and say how and why you need the extra help.
If you can, try to provide as much new evidence as possible - consultant/hospital reports, GP records, prescription lists etc, as well as statements from anyone who knows you and your condition well. This could be friends or family who help you or professional carers involved with you. Don’t submit anything you’ve used in the initial application because it won’t be considered. If you need any help when the time comes keep hold of my user details and PM me - happy to help if I can.