• marie-tolly

PIP-ing mental health issues and benefits to the post

Updated: Jul 24

Jacob Lewis, now Personal Independence Payment (PIP) Team Leader at Independent Living West Country, was in care for 15 years. He suffered from agoraphobia, was bullied for a number of years, and has seen the mental health system from both sides. Today, he works and supports people with mental health issues. Here’s his story.

In his younger years Jacob was badly bullied. As a schoolchild, he used to get chased home every night, running to avoid being attacked. He suffered from ADHD, but that wasn’t diagnosed until he was 12.

Home wasn’t a great deal better for him as his father suffered from alcoholism. Some days dad would be sober, others not. Arguments between his parents only made the situation worse.

By the time he made it to middle school, Jacob found socializing very hard indeed and he increasingly got in to trouble. He was viewed as lazy and disruptive by teachers; compounded by the fact that his school had lost his medical notes. As a result, no account was taken for his condition, despite Jacob taking 12 Ritalin a day. He was left feeling abandoned by the system and resorted to bunking off school every day for 6 months.

Fortunately for Jacob, a change of school provided a fresh start, and although he had to go back a year, he began building a group of friends who, like him, loved gaming.

His dream was to study IT but there were no courses. So, Jacob started a petition and succeeded in getting IT added to the curriculum. Requiring a GCSE in maths to take the course, that’s all he focused on. He secured a C+, despite his predicted F-grade.

For all his efforts, Jacob found the computing A-level course tough. He hated the extent of the maths, and instead moved to Exeter College to study IT. At the same time, he started working at McDonalds, where once again he struggled to fit in and felt socially awkward. So, instead, he took a job at Somerfield, where he discovered new gaming friends, as well as alcohol.

Still living at home, Jacob struggled with his father’s alcoholism. He soon found himself drifting from job to job, drinking more and more, running into financial difficulty, and falling out with his dad all the time. £6,000 of debt later, and having stopped taking his medication, Jacob’s inability to get on with dad and frequent arguments with his sister meant that, despite a having strong relationship with his mum, he had to leave. Only years later would he discover that social services had forced the issue, deeming him a risk to his sister.

By this time Jacob was working in a bar, living in medium support housing in Exeter, in gated cluster accommodation. It was here that he was attacked by a resident high on drugs, severing a tendon in Jacob’s thumb, which meant he was unable to work for six months.

From that day forward Jacob learnt to trust no one. He wanted to leave the accommodation badly and so lied about his mental state, enabling him to move into low support accommodation where, with a lack of staff support, he soon became nocturnal, sleeping during the day.

He began comfort eating. World of War Craft enveloped his life, playing up to 18 hours a day and smoking up to 40 cigarettes. He was going off the rails, fast.

It was about this time that he discovered that his father had cancer. Jacob didn’t take it well, resulting in him being moved into high support housing with staff on hand eight hours a day.

Sadly, Jacob’s father passed away, leading to three years of psychotherapy to help him cope with the scars, during which his weight ballooned to 33 stone. Although the therapy helped, the turnover of staff in the high support housing was unsettling. Jacob became agoraphobic, rarely leaving the confines of the house.

The one light in his life was a lady called Janice Passmore, who used to look after Jacob when he younger. She was a great help following the funeral of his father.

A family friend, Janice owned her own care services business and offered Jacob the opportunity to move in to one of her houses. It was here that Jacob started to turn things round.

Jacob knew that he needed to lose weight and applied for weight loss surgery, requiring him to lose 10% of his bodyweight in order to receive the surgery. To do so, he needed to give up smoking and binge eating, and so he joined a therapy group, where he met his future wife.

Over the next year he lost 5 stone of weight but couldn’t give up smoking and so put the weight back on.

Fortunately for Jacob, he got a second chance. This time he quit smoking first and stabilised his weight over 6 months, qualifying him for a sleeve gastrectomy. Following a strict liquid only diet for the two weeks before the procedure, he underwent surgery removing 80% of his stomach, and with it the constant feeling of hunger.

Things started to look up.

In the intervening period, Jacob’s mother had remarried, marrying a recovered alcoholic who had turned his life around, studying a Masters degree in addictive behavior, before becoming a doctor and one of the county’s leading advisers on alcoholism. For Jacob, it provided a stable home to live in while he recovered.

A year and a half later, Jacob was ready to move out, sharing a house at first with Janice Passmore’s son before living on his own. Over the next 18 months he lost 17 stone. His confidence blossomed and Jacob started to believe in himself.

It wasn’t all smooth sailing though, with ups and downs along the way. But Jacob found solace by getting in contact with one of the girls that he’d met at the weight loss therapy sessions. The two become closer and started dating.

Then, once again, everything was thrown into turmoil. The house that he’d been renting was sold by his landlord, throwing Jacob back into shared housing, bringing back many bad memories.

Thankfully for Jacob, his psychotherapy nurse at the time wrote a letter outlining the damage that shared housing could have for his mental health, resulting in Jacob being placed on the council’s B-Band housing list.

Confined to the one room in shared accommodation, Jacob started bidding on properties so that he could live with his girlfriend.

Almost immediately he got the offer of a property, but it was very poor. So, he started bidding on houses that he didn’t think he’d get, discovering that the more you bid on properties, the higher up the list you get. It was a tactic that worked and on the very same day that he passed his driving test (22 December 2016), he received news that an apartment under construction had been reserved for him and would be ready in February.

Jacob started working part-time at Waitrose, working the 15 hours that he was permitted to on benefits. The trouble was, there was no incentive for him to come off benefits and go full time. With Employment and Support Allowance (ESA), Personal Independence Payment (PIP), £400 for part time work and no Council Tax to pay, he’d need to clear well over £2,500 per month in salary to be better off. But he also knew that if his partner moved in, he’d lose two-thirds of those benefits.

So, until he moved into his apartment, it made sense to remain in part-time employment.

By June, he’d gone full-time and in July 2017 his partner moved in. The pair worked hard to save money for their wedding, but his partner lost her job making Jacob the only wage earner. Despite this, and with the support of Jacob’s family, the pair married in March 2018 and soon after his wife started work at Exeter RD&E.

Jacob was still working at Waitrose, but the pair agreed that following their honeymoon he should look for his dream Job.

Central to Jacob’s self-worth was a desire to help others. That drew him to apply for a position in the care sector. Having become friendly with a customer at Waitrose who’d told him about her care sector job, he decided to apply for a position in the same business.

Despite lacking relevant experience his interview went well. He took to the role like a duck to water. Within 4 months he was given the opportunity to become a senior working on care plans and risk assessment. Soon he found himself working 70-80 hour weeks.

Despite loving what he did, the hours were unsustainable, so Jacob chose to leave. It was then that he met Marie Tolley, founder of Independent Living West Country. The two got on instantly and Jacob started working for the business as a male care worker.

Unlike his previous role, where staff had just 30 minutes to see a client, tidy up and go, Independent Living West Country took a very different approach. Here, Jacob had time to talk to and to get to know clients, in some cases having 3-4 hours per client. Here, the emphasis was firmly on clients’ mental wellbeing, providing a package of support tailored to their individual needs.

Having suffered from mental health issues in his younger years, Jacob had a real understanding of the issues at hand and was able to relate to clients based on his own experience. However, it soon became apparent that Jacob’s greatest skill lay in helping Independent Living West Country’s clients obtain the welfare benefits that they were not only eligible for, but badly in need of.

Having demonstrated an in-depth understanding for how the benefits system works, both from personal experience and for clients, Jacob took charge of assisting clients with their Personal Independence Payments (PIP) and benefits.

“PIP forms are complicated,” says Jacob. “The more articulately the form is filled in, the more likely you are to get the benefit. That’s difficult for most people suffering from mental health conditions, and it’s where we can offer invaluable support.

“Clients rarely like to talk about their condition, and they often shy away from the truth, but in order to get the benefits they need, we have to tease that out from them. We need to express the struggles that clients face, and we have to understand what it’s like on their worst, darkest days.

“Clients with the most acute needs can wait months if they fill out the forms poorly. Worse still, they can wait several months for appeals while they struggle to make ends meet, only worsening their conditions.

“We help to avoid that by working with our clients to articulately fill out the forms. We’ve created a digital PIP form to speed the process up. We can ask all the questions that we need to, ensuring that nothing is missed and that every aspect of their condition is addressed. We’re able to explain why support is necessary, covering off the individual’s back-story so that they get the assistance that they need and can access all the benefits to which they are rightly eligible.

“That’s not always easy, particularly for individuals that are severely autistic or those who don’t like being challenged, so we take great care in the way we do this.

“The tragedy of the welfare system is that forms that are filled out most clearly are dealt with first. That leaves many that desperately need support floundering, scared by the process and unable fill out forms in a way that will release the benefits they desperately need. That can lead to delays in welfare, poverty, the need for food banks, depression or worse.

“Too many individuals with mental health issues have not been properly assessed and have not had the right help to get the correct benefits. We make sure that’s not the case. It’s something that we take great pride in. It’s a vital part on their road to recovery and journey towards greater independence,” says Jacob.

To find out more about how Independent Living West Country could be helping you, a member of your family, or a client suffering from a mental health condition, contact our helpful team today.

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