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. Health Care Professionals assessing her, never understood the condition. 

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. Why are we reapplying for a blue badge when she cannot improve?

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.

They do not fit every condition, and so many people are failed by poor assessments. One former employee who was a PIP assessor informed:

"From my time working as a face to face disability assessor I encountered numerous situations which bordered on inappropriate assessments. Frequently staff were sent to people with long standing medical conditions with no chance of improvement. We were sent to decide the level of restriction this person experienced when this could have been done behind the scenes with appropriate medical records..."

"Not only does the stress of assessment cause a great deal of stress on the person it also affects families, especially when questions can be of a sensitive nature. Complex conditions and running over time can result in assessors rushing elements of assessments in order to finish on time and make their next call..."

We all know people like my mum won’t get better - why can’t the Government take this into account? The Department of Work and Pensions introduced a 10 year 'light touch review' in 2018, which is an improvement, but why is there a need to reassess? My Mum will sadly be dead in 10 years, and if she was not, she would be totally bed bound by then. 

Even with the light touch review, people commonly feel let down by the assessments and humiliated, and for complex conditions like Huntington's disease which cause complex cognitive impairment, the assessments are not always fit for purpose, which leads to appeal, and then people have to go to get the decision overturned.

That’s why I’m asking the Government to scrap reassessments for people with life-long disabilities completely - and instead award them a ‘support for life’. This would make life so much easier, and surely it would save money too. This would include blue badges, and other benefits that people have to constantly be renewed for. 

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 us on ‘Campaign for my brain’ on Facebook @campaign for my brain and Instagram @Campaignformybrain where we campaign for all neurological diseases. Support the fight for equality for people with disabilities! 

Emma