A Houghton-le-Spring woman is calling for the government to change the way it assesses people who are living with degenerative diseases, after battling with the Department of Works and Pensions for the past nine years.
Charlotte Allen, who has suffered from Parkinson's for 18 years, says the current system is destroying people's lives.
And although Charlotte's benefits have been reinstated after Chroniclelive took up her case with the DWP, she is angry that it has taken so long to get there and is concerned for others in the same boat.
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Charlotte, 54, said she felt "bullied and harrassed" after the DWP revoked some of her benefits, leaving her struggling to work in her own business.
The mum of one, who moved to the North East from London in 2019 to live with her partner, wants the DWP to award everyone who has been diagnosed with Parkinson's the higher rate of PIP automatically, as she says reviews and assessments are a waste of time and money, because the disease will only get worse, never better.
"I wonder out of the thousands of people with Parkinson’s who have been harassed and asked to attend assessments to review their benefits, how many have have got better, or have improved health, so their benefits could be stopped?" she said.
Charlotte's ordeal has included:
- Losing higher rate Disability Living Allowance, which had enabled her to run a mobility car;
- Being awarded the basic rate of Personal Independence Payment (PIP), after she was assessed by an ambulance crew member, who admitted she knew very little about Parkinson's;
- Having appeals for higher mobility element for both PIP and its predecessor Disability Living Allowance turned down three times;
- Getting no financial support during the pandemic;
- Having to let an assistant go who supported her with tasks she struggled with in her business as her Access to Work funding ended:
- Being asked to fill in numerous forms, which Charlotte says do not portray the true situation of living with Parkinson's and being asked for new financial documents when she tried to reinstate her Access to Work claim;
- Having her application for Access to Work cancelled, leaving her another 12 weeks without money.
"The guy dealing with my Access to Work application at the DWP has put so many hurdles in the way and at the final stages cancelled my application" said Charlotte, whose partner Russ Bradford also has the disease, a condition that affects the brain causing problems like shaking and stiffness that get worse over time.
The DWP apologised for Charlotte's ordeal after it was contacted by ChronicleLive.
A spokesman said: “We apologise for the distress caused to Ms Allan. After reviewing further evidence, we can now award Ms Allan with the Enhanced Mobility rate and are working with her to progress her Access to Work application.”
And although Charlotte is delighted her problems appear to be over, she is concerned about the 145,000 people living with Parkinson’s in the UK, as she says not everyone is in a position to shout, create awareness and fight for what is rightfully theirs.
"I have battled with Parkinson's for 18 years. Some days I can't even write my name, some days my speech is affected, some days I just fall asleep.," she said.
"You never know what your abilities will be like from one day to the next.
"When will the DWP truly understand the nature of Parkinson’s? It is not going to get better and there is no cure.
"The attitude of some people working for organisations who are meant to help us is truly unbelievable."
Charlotte says she feels completely unsupported by the DWP, as she tried to continue working in the recruitment business she started seven years ago.
"I need help and support to work, I am self-employed. I just want to be able to have a little normality in my life and to continue to work, it means everything to me," she said.
"I would not wish this condition upon my worst enemy, life is so hard to keep struggling on.
"I would welcome the opportunity to let the DWP into my life for a week and see what it involves.
"Parkinson’s will only ever progress and it’s so debilitating as well, there is no cure. I am exhausted, frustrated, and my anxiety levels have hit an all-time high.
"I don’t want to have to fight and navigate hurdles all the time for all these things that people living with Parkinson’s should be automatically given.
"The DWP and their current processes are destroying families."
