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“End reassessments for those with irreversible disabilities or progressive conditions”

My Mum has Huntington’s Disease. It is a fatal, genetic, progressive disorder which cannot be cured. Over time, it stops a person’s ability to think, eat, talk, walk. It never gets better. 

Over the years we have had to continually prove this, fight it, argue it to get the most basic of support.

This year, the final straw came when we waited for over 6 weeks for a renewed blue badge, because they didn’t have an up to date form from the agency that deals with the disability benefit PIP.

This delay made going out extremely difficult for my mum. And the PIP assessments are long and humiliating – it’s so cruel to constantly have to get reassessed. 

We all know people like my mum won’t get better – why can’t the Government take this into account?

That’s why I’m asking the Government to scrap reassessments for people with life-long disabilities – and instead award them a ‘support for life’. This would make life so much easier, and surely it would save money too.

As a healthcare professional and daughter of someone with an irreversible disability, I’ve seen first hand how hard it can be to constantly fill in forms, get evidence and reapply.

As if it isn’t hard enough dealing with such circumstances, the red tape is constantly there to limit your basic human rights. This destroys your dignity, and creates such a burden and stress on individuals and their carers. 

I’m asking the Government to create a scheme whereby those with permanent disabilities that will progress, or are scientifically irreversible, get a lifelong card, almost like a driving license.

This can be used to access PIP, badges, anything they require without constant form filling and stress. They can just update if they worsen and have INCREASED needs, not be questioned over whether those needs are still present. You don’t have to constantly renew your drivers license, so why should you with this?

I believe it is a mockery that people with diseases like my Mum’s are even asked to prove they aren’t miraculously better. If the card had a unique number on, then there would be no detailed information sharing needed. Person X with this unique number has lifelong needs….. job done! It would help information sharing between authorities too.

I also believe it would save significant administration fees in the costings of processing applications. This money could go back into the social care system and councils that are at breaking point.

Many people don’t have an advocate or family to look after them or fill in forms for them. They are left vulnerable and unable to fight for themselves. I believe people should have easy access to what is meant to be there to help them. 

Please help me get dignity for my mum and all the other people like her – stop these unnecessary reassessments so that they can live a better life!

Please follow me on ‘Campaign for my brain’ on Facebook and Instagram where campaign for all neurological diseases. Support the fight for equality for people with disabilities!” 


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