The Green Paper Discussion (the document link is here too!)

Yes I have the same C5/6 C6/7

The chiari journey started last year and has been a difficult one im still having various tests . My tonsils are 4mm but it doesn't matter how low they are tbh the symptoms can be severe at just 4mm like mine. I honestly thought I had a brain tumour and wasn't taken seriously atall. Just had second MRI and they are now also saying intercranial hypertension 🤷🏻‍♀️. Yes the chiari does affect vision aswell as a whole host of other things ,I get numb toes ,tingling , dizziness , tiredness , vision changes , not to mention a pain in my head like a train has hit me .you also get neck pain which coupled with spondylosis is a horror too. one thing I will advise is don't give up on getting a diagnosis,if you feel something isn't right or they try and play something down that is concerning you seek a second opinion. I changed hospital as I wasn't happy with first

How bloody dare they! I’m going to raise this point later but just to say IT REALLY MATTERS WHO YOU GET.. in terms of any assessment, checking UC or PIP check their demeanour/ how they speak to you? -also GP/ Health Professionals. Some people are empathetic and on side, others hard wired to catch out others. They become part of the work culture they are experiencing. At times that’s great, other times a detriment to the disabled.

I personally record everything and tell them that. My GP surgery very mixed. Head of practise arch Tory plus practice nurse who is a fascist, husband is a reform party member. She tends to sit on referrals? I always ask to see my long term doctor.. plus keep and back up everything. All communication re health and from DWP. It’s sad to be so untrusting but I’ve learned through experience.

IIf at least one of the activities under duly living scored 4 points then when you are due a reassessment you will continue to receive dailing living pip. Mobility isn't affected. If your condition was considered severe enough you may not even need a review for a long time and nothing will change without a review anyway as far as I understand this .

I agree this really is terrible especially as the scoring is quite subjective among assessors. I scored 4 in one activity but strangely for a category where I need the most help I only got 1 out of 8 as clearly they didn't comprehend the issue I have. At the time since my overall score enabled an enhanced award I didn't raise the matter of the activity concerning need for help with medication and treatments as being underscored so as to avoid further stressful interaction about my pip. Now that there is ths minimum 4 points on one daily living activity I can see how situations like I experienced with incorrect scoring will come back to bite unfortunate people so unfairly. If I hadn't 4 points in one activity I would now be planning to request a reassessment of the activity I knew was underscored at next review .the whole thing is totally unfair as the scoring is inaccurate and inconsistent. At least for the moment this hasn't been passed into law yet, nothing will happen until nov 2026. If your condition was considered severe enough to only need a light touch review in 10 years or you are not due for review anyway for ages then your pip should not be at risk anyway until that point from what I understand and then that point which could be years away, you should have the opportunity to present your daily living needs more persuasively ware of the new 4 point minimum appeal if necessary.. hopefully this may therefore not affect you for ages or at all.

no didn’t appeal I applied once pip then when it changed to adp in Scotland re applied but still no luck

If you are talking about pip it is not awarded based on what disease or condition you have whatsoever. It is only based on the impact of your condition on your mobility and daily living. It le purely a functional benefit, nothing to do with tour diagnosis whether for existing or new pip claimant. Didnt you know that ? Are you receiving pip?

I don't score 4 points on the daily living tasks either, but really feel when my PIP is up for renewal, I won't stand a chance. I will be back on the poverty line and my mental health will spiral down to a point I won't function at all.

Typically decisions made by fools who have no idea. I just hope the Mental Health charities can oppose this to the highest level and speak for those of us less able.

I thought Starmer was a human rights activist and yet here he is taking away that very thing from us.