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Health & Fitness Paramedic is campaigning to put an end to 'cruel' benefits reassessments after her 'slowly dying' mother kept having to prove she was ill

19:30  21 february  2020
19:30  21 february  2020 Source:   inews.co.uk

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after life threats have been identified and corrected in the primary assessment. The paramedic must always keep in mind that the information he or she fails to obtain While the patient is trying to explain things to you, his or her anger can escalate faster than if he or she were not intoxicated.

After her little boy died , this mom met the girl with his heart. My paramedic was meant to be a stepping stone to a career in LE and something for me to do on the side, not long-term. Instead, my paramedic was the sole reason I was hired to be a career firefighter- paramedic , where I spent 4 years.

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As a paramedic, Emma Terranova Davis has helped people with all sorts of illnesses and disabilities. But when it came to her own mother Jennifer's welfare, she was left feeling powerless.

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Emma had to battle for years to get her mum the disability benefits she was entitled to, watching as the 62-year-old endured several "hellish and humiliating" reassesments.

Depsite the fact that Jennifer suffers from Huntington's Disease and can't write, feed herself or walk properly, she has had to prove to the Department for Work and Pensions (DWP) again and again that she has a chronic illness and will never recover.

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The ordeal put such a huge strain on her husband, Tony, he even suffered a stress-related breakdown.

Jennifer has a progressive illness which means she is slowly dying (Photo: Emma Terranova Davis)

As a result, Emma, from Gloucestershire, is now campaigning to have benefits reassessments scrapped for those with irreversible disabilities or progressive conditions.

"My mum suffers from a fatal, genetic, progressive disorder which can't be cured," she told i. "Over time, it stops a person's ability to think, eat, talk and walk and it never gets better. Despite this we've had to continually fight and argue to prove she isn't well over the years, just to get her the most basic support. It shouldn't be that way."

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Genetic disease

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Jennifer was diagnosed with Huntington's in 1995, when she was 38 years old. Her own mother had suffered from the condition and she decided to have a genetic test to see if she had inherited it.

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"The test was positive and she was devastated as she and my father wanted to try for another baby," recalled Emma. "I remember Mum slipping into a depression for a while. Not much was known about the disease back then but she had seen my Gran go through it so knew how awful it was."

Emma was only young when her mum was diagnosed (Photo: Emma Terranova Davis)

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For a few years Jennifer managed to continue working and driving, with no major symptoms, But gradually, she began struggling to balance, hold things, and started suffering from mood swings.

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She gave up work in 2010 and applied for Disability Living Allowance (DLA), which was granted. But even though medical evidence stated that her condition would only deteriorate as the years went on and that she would never get better, she kept being called back for reassessments.

"Mum would be in tears sometimes as each reassessment would remind her of how her disease was progressing and what she could no longer do any more. It was awful."

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Emma Terranova Davis

"The assessments were so embarrassing for her and she dreaded them," said Emma. "They involved things like checking if she could walk a few steps or raise her arms and the assesors would ask her questions which she would find very distressing.

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"She had to be reassessed every two to four years which meant not only a face-to-face assesment but also filling out and submitting lots of paperwork all over again to prove to the Department for Work and Pensions (DWP) that she was still ill.

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"Mum would be in tears sometimes as each reassessment would remind her of how her disease was progressing and what she could no longer do any more. It was awful."

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Jennifer kept having to prove how illshe was (Photo: Emma Terranova Davis)

Huntington’s disease is an incurable, hereditary brain disorder that causes damage to brain cells or neurons. It happens when a faulty gene causes toxic proteins to collect in the brain.

Symptoms include involuntary jerking or writhing, difficulty moving and walking, problems with speech and swallowing, confusion, an inability to concentrate, changes in mood and behaviour, and breathing difficulties. It usually develops between the ages of 30-50 years and there is no treatment or cure for the condition.

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Struggling to walk

By the time Emma, 30, got married to her husband Chris, 35, and had their daughter, Rosa, in April 2015, Jennifer had already begun struggling to walk and care for herself.

"She'd always been very glamorous, with nice hair and clothes, but my sister Kerry and I began noticing that she was looking unkempt," she said. "She'd put on her clothes back to front and had stopped washing her hair. It was then that we realised she couldn't manage any more."

Jennifer had always been glamorous and taken care over her appearance (Photo: Emma Terranova Davis)

The family contacted social services to ask for help at home which Emma says was a 'painstakingly difficult and long process'. Eventually, they were assigned carers but were still having to attend reassesments to ensure Jennifer would receive her benefits.

Since the introduction of Personal Independent Payment (PIP) in 2013 - a benefit which helps with the extra costs of having a disability or long-term health condtion - she has had to attend four physical reassessments, which Emma says have been 'undignified and upsetting' for her.

The assessments are distressing and humiliating

Emma Terranova Davis

"Mum can’t hold a pen, write or use cutlery. She’s incontinent but she won’t want to admit that to the person assessing her because she's embarrassed.

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“She has memory loss, obsessive ­behaviour, gets agitated, has severe ­anxiety and suicidal thoughts, involuntary movements, poor balance, often chokes on her food – the list goes on. She is basically slowly dying. All of the medical evidence makes this clear so why does she keep having to prove to the DWP that she isn't going to get better?

Read more: Living with MS is painful but I've never felt indignity like a PIP assessment

“The assessments are distressing and humiliating. They can involve the person being asked to hold a pan, to see if they can cook. They will ask them to stand and sit, stand on one leg and then the other, stand on tiptoe and back down.

"They will ask ­people to put their hands behind their back and above their head, also to bend ­forward. and follow a points system to ascertain whether someone should be entitled to PIP or not which is ridiculous.

"And they don't fit every condition anyway and aren't carried out by clinical experts so many people are failed by them."

Poor Jennifer felt humiliated at the benefits reassessments (Photo: Emma Terranova Davis)

Emma said the evaluations made her mother feel like she was 'getting the begging bowl out' and the stress of meetings and paperwork caused her dad Tony to have a mental breakdown in 2016.

When Jennifer was asked to attend yet another assessment in 2017, the family refused and contacted the charity Huntington's Disease Association for help.

Enough was enough

"We'd had enough and by that point, there was no way we could get Mum to a 9am ressassesment meeting - she was too poorly," explained Emma. "I was sick of fighting and had no fight left in me."

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The charity applied for a ten-year 'light touch review,' on Jennifer's behalf, something the DWP has introduced in recent years to lengthen the amount of time those with chronic conditions have in between PIP reassessments.

Emma had to turn to a charity to help in the end (Photo: Emma Terranova Davis)

"That's an improvement but why is there even a need to reasses?" argued Emma. "We all know people like my mum won’t get better and I don't see why the Government can't take this into account.

I understand there are fraudsters out there but really ill people are not going to fake it and making them constantly have to prove they are ill is cruel

Emma Terranova Davis

"My mum will sadly be dead in ten years, and if she wasn't, she'd be totally bed bound by then so even a light touch review is ridiculous."

This summer, the final straw came for Emma and her family when they had to wait over six weeks for a renewed blue badge, because the PIP department at the DWP hadn't sent through the right paperwork to the Department for Transport.

Campaigning for change

"The delay made going out extremely difficult for my mum as we couldn't use the car as much and, when we did, we couldn't park in disabled bays. Again, I can't understand why people with chronic disabilities or illnesses who clearly aren't going to get better aren't issued permanent ones and have to reapply."

To campaign for a change in the regulations regarding PIP, Emma set up a petition in December last year, calling for the Government to put an end to benefits reassessments for those with irreversible disabilities or progressive conditions. It has so far been signed by over 360,000 people.

"I understand there are fraudsters out there but really ill people are not going to fake it and making them constantly have to prove they are ill is cruel.

"It has been very traumatic for us as a family and it's bad enough watching Mum deteriorate without having the added stress of worrying whether she is going to continue getting the financial help she needs. I don't want other families to have to go through the same hell."

Mum-of-one Emma is battling for improved aid for those with incurable conditions (Photo: Emma Terranova Davis)

Emma, who luckily has not inherited the Huntington's gene herself, also set up the organisation Campaign for my Brain to help raise awareness of neurological conditions, together with her business partner Catrin Roberts. Catrin's father had Huntington's for nine years until his death in 2014 and her family also experienced difficulties with the benefits system.

Scrap reassessments

"We want the Government to scrap reassessments for people with life-long disabilities completely, and instead award them support for life, which would include blue badges, and other benefits that people have to constantly be renewed for. This would make things so much easier for them and their loved ones, and would surely 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, some of which are forty pages long, get evidence and reapply. It's a nightmare."

A DWP spokesman said: “We want to ensure everyone receives the right level of support. Reviews play a vital part in this. We have introduced light touch reviews at the ten-year point for pensioners and those on the highest level of support whose needs are unlikely to improve.”

You can sign Emma's petition here.

'I was talking so quickly I would bite my tongue': my experience of postpartum pyschosis .
A few months after giving birth, Catherine Cho was admitted to hospital in the US and diagnosed with postpartum psychosisMy first memory of psychosis is the light. A bright light. I’m lying on a bed. The room is white, stark and plain. I’m wearing a hospital robe; it feels like paper against my skin. I try to raise my arms, but I can’t, there are restraints crossing my body, snaked around my wrists.

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