I'm keeping my head above water. If PIP changes, I'll drown

I try to manage my finances as best I can (Picture: Naomi Gilchrist)

Logging into my British Gas app last month, I was shocked to see an unexpected bill waiting for me.

I’d been trying for countless months to switch from a standard billed meter to a pay-as-you-go smart one, but with no success. As a result, I’d often randomly get billed for multiple months in one go.

This one in particular was for three months – and it was for over £200. It felt like a gut punch.

I paid it, of course, but it’s left me in debt for the foreseeable, which is an added financial stress I could do without.

I try to manage my finances as best I can and even use an app to log all my expenses and income to try and stay afloat. But as a disabled person with lots of extra, hidden costs, it’s not always easy to keep on top of.

In fact, in order for me to have the same standard of living as non-disabled households, I would need at least an additional £1,122 per month.

There’s not a part of my body that hasn’t been affected and the unpredictability and severity of my symptoms (Picture: Naomi Gilchrist)

So when I read the news this week that the Government was launching a Personal Independence Payment (PIP) consultation warning of their concerns about the ‘sustainability of the current model’, I immediately felt sick to my stomach. It’s clear to me that they’re gearing up to tighten the purse strings.

In my opinion, this is totally unfair on a marginalised group who, I feel, are seen as a drain on society by this government. It’s like they’re trying to push us into work, but many of us physically can’t.

I need both my Universal Credit (UC) and PIP to survive, so the results of this consultation could threaten that and possibly even put me into financial poverty. There are so many uncertainties that only increase the hostility and anxiety that disabled people in the UK are feeling right now.

When I was 24, I was diagnosed with the neuroimmune illness, M.E. as well as Ehlers-Danlos Syndrome – a hereditary connective tissue disorder.

It all started in 2013 with what I thought was a bad case of the flu. I was constantly tired, suffered with brain fog, and my mobility was beginning to deteriorate. Yet my GP insisted it was nothing more serious than Post-viral Fatigue Syndrome.

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I was told to rest and that I’d soon recover. But I never did.

And while getting my diagnoses were a huge relief from 2017 onwards, the hard work was only just beginning.

Over the years, my health declined gradually, my exhaustion and mobility worsened, and I had to deal with joint dislocations, non-epileptic seizures, and migraines. 

There’s not a part of my body that hasn’t been affected and the unpredictability and severity of my symptoms are frustrating to say the least. As a result, I’ve become reliant on more medical equipment and carers for a lot of help. 

That wasn’t such a problem when I used to live at home with my dad and step-mum, as they used to take on the majority of the load. I paid them rent out of my UC payments, but they sorted the food shop, utilities and other household essentials, which made my life easier.

I think moving out cost me around £1,500 (Picture: Naomi Gilchrist)

However, as I approached 30, it became important to me to live alone for two reasons.

One: I was turning 30 and I felt it was time to get a place of my own to gain some independence.

And two: I would eventually need certain adaptations and aids that I simply couldn’t get while living at home. Not to mention that the stairs had become near impossible to navigate.

So, I started searching for houses that met my criteria.

Ideally, I needed a place with level access for my wheelchair, grab rails in the bathroom and, as I experience extreme hypersensitivity (meaning a shower feels like being in a car jet wash), I needed a property with a bath.

With help from my occupational therapist and a council appointed support worker, I was put on a priority list for social housing. And after several months, I found the place I would call my home – a little one-bed bungalow.

As much as I would like to say the place was ‘ready to live in’, I did need to make a few adjustments first.

It needed repainting and new flooring, but there was also the matter of setting up my main pieces of equipment like my bed and bath lift – both of which have thankfully been provided by the NHS.

And then came hidden costs.

In order to live alone comfortably, I also needed to invest in a whole host of other accessible gadgets, such as my hot water dispenser (it’s not safe for me to use a kettle in case I have a seizure); smart lighting and plugs; and an over bed table.

All in all, I think moving out cost me around £1,500, and that was before bills!

Despite this, I quickly discovered that I loved living on my own. Having the place decorated how I wanted, complete with my own craft corner, felt incredibly satisfying and I enjoyed being able to make decisions for myself.

My heating and electricity costs are constantly extortionate (Picture: Naomi Gilchrist)

Even the simple things like choosing what coffee to buy, or what I want to eat for tea that evening, or being able to put the heating on when I’m cold, made me feel like I’d truly made it.

Of course, that’s not to say there are not still challenges for me.

On my bad days – when I’ve had a non-epileptic seizure, am experiencing fatigue so severe that I can’t even get out of bed or am struggling to tolerate sound, light, touch and scents – I certainly couldn’t do it without my carers.

But it’s generally my bills that are my constant source of worry.

While I get a reduced water bill and council tax because of my disability, I don’t get help with food, gas or my electric bill and these are generally the areas where I need the most support.

Due to having multiple allergies I have to purchase a lot of ‘free from’ food that doesn’t come cheap, which generally makes my food bill higher than your average person.

As for my heating and electric bill, the costs are constantly extortionate.

Because my body can’t maintain its own temperature, come winter, I need the heating on constantly and in the summer I need cooling fans.

By the end of the month, I’m running low on funds (Picture: Naomi Gilchrist)

And, as a lot of my necessary gadgets also need to be plugged in 24/7, it only adds to the energy I’m using. These include my profiling bed (which looks a bit like a hospital bed), my hybrid airflow mattress (which reduces the risk of me developing pressure sores), CareLink emergency intercom system, fridge medication, and bath lift.

While I have a system in place right now – carers, nurses and my local community therapy team – I really worry about my financial future and whether my UC and PIP will keep up with the cost of living.

These payments are all I have as, due to the complexity and uncertainty of my health, I’m unable to work.

Typically, I reserve my PIP to help me cover the extra costs of anything disability related such as my care contribution payment, purchasing disability aids, employing a cleaner, and my carers’ expenses.

Everything else – food, utilities, council tax, TV license and everyday expenses – I pay out of my Universal Credit income.

Normally, by the end of the month, I’m running low on funds and I have to be extra cautious. And on the rare occasion when I do have something leftover, I put it aside to save for bigger, unexpected expenses.

The future for me remains uncertain (Picture: Naomi Gilchrist)

And while I’ve been grateful for the government’s Cost of Living help these last few months, I know these payments are just temporary and eventually I will need to find a long term solution.

But I shouldn’t have to constantly be watching the pennies or be nervous every time my next bill drops. More needs to be done to help disabled people like me.

That’s why the charity Scope is calling for discounted energy bills for disabled people. It also wants the government to provide a cost of essentials payment of £12 a week to lift over 100,000 disabled people out of poverty. And I for one am in favour of both. 

I also personally feel that changes need to be made in the way people are assessed for disability benefits. I loathe this process, but I do it because I have to. 

Next month I’ll have lived on my own for a year. It still feels surreal to say that. But the future for me remains uncertain. 

My disability has an impact on everything I do, but it shouldn’t impact my ability to live in my own home.

For more information about Scope, visit their website here.

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