The last 7 years have been the worst years of my life.

I had been a carer for my Mother for the 25 years prior. Her care needs increased over the years as a diabetic type 1. Our NHS did some marvellous work helping her over those years. In the last 7 years her care needs really increased.

For pretext on her diabetes, it has always been described as “brittle” by consultants. Meaning her blood sugar levels changed very rapidly. Whilst one unit of insulin may barely lower sugar levels in some diabetics, this could cause my Mother’s sugar levels to plummet, resulting in it becoming too low. As a result, her sugar levels were always fairly poorly managed and tended to stay on the high side to avoid the risk of them dropping dangerously low.

Her increase in care started with her first toe amputation from a sore created by shoes that were too tight. She didn’t feel this as a result of her neuropathy caused by almost 40 years of diabetes. She bravely fought through this and returned to normal life as a civil servant. A job she was immensely proud of doing.

Over time she developed more foot ulcers, eventually having a second toe removed. Again she fought through and returned to work.

Eventually, with her now being even more susceptible to infections, she developed a further ulcer on her foot, leading to the amputation of her leg. Despite six months in rehabilitation, learning to walk again with use of a prosthetic, and mobilising in a wheelchair when this was too difficult, she AGAIN tried to return to work. This time was more difficult, as the adaptations required for her to enter the building and sit at her desk were not organised in time.

The real downfall for her began with admission to intensive care with pneumonia. During this time her kidneys began failing. She fought for her life, and a few months later was released.

Eventually her kidneys failed, and she required dialysis 3 times a week. Despite all of this she carried on trying to work 3 days a week around her dialysis. She could not at this point drive due to her prosthetic and required taxis to deliver her to and from work and her dialysis appointments.

She applied for PIP benefits. She was denied the higher mobility benefit as she was considered too mobile.

We took this to tribunal, as we felt this was unfair. She could not leave or enter the house unaided as we did not have a ramp for her wheelchair.

The tribunal found that despite the fact she required assistance to enter the building, she could wheel herself inside the building, and therefore was mobile. To my utter disbelief.

If she had been allowed to have this benefit, we would have had the funds to hire an adapted car for her. Despite having sold her car, we could not afford one as these funds went on her taxis to work. When those ran dry, she was stuck. Surely that is the point of these benefits? To help those that truly need them?

We argued that she could not mobilise outside of a flat building, as local pavements were too uneven. She could not physically push herself in her wheelchair along these. The response of the tribunal was to move somewhere else.

Despite her owning her own home, we could not afford to buy her a bungalow that she could make use of. These typically cost twice that of houses.

Eventually, she could no longer afford to get to work. She spent the last 2 years of her life imprisoned in the ground floor of her home, with no access to washing facilities. Leaving the house solely for dialysis.

The last 2 years of her life, I struggled to care for her 24 hours a day, whilst working a full time job. Thankfully the council were able to provide an hour of care a day. Half hour in the morning so I could get ready for work, and half hour in the evening so I could cook us some dinner. The all night calls to hoist her to the bathroom were mine, and were extremely difficult around full time work.

The last 2 years of her life, at 26 years old, I had to move back in with my Mother, moving out of my home with my partner to help care for her, and help her afford to live, putting my partner in a difficult situation paying for our rent alone. He couldn’t move in with her with me, as working shifts would make her more agitated with her health issues.

When we lost my Mother, I moved to having to care for my Grandmother for a year. We couldn’t get her the care she needed either.

A year and 5 months after we lost my Mother, we lost my Grandmother to COVID-19 in November 2020. COVID-19 was acquired in the hospital. She died alone because we were not allowed in to hold her hand whilst she died. She was terrified, but thankful to be returning to her daughter.

At her funeral, we were allowed 15 people to celebrate her life. We didn’t have a wake, or even a cup of tea with her friends.

During this time, your government were holding Christmas parties.

Why is your fun more important than my family?

Why has your government made it so impossible for those with genuine disabilities to be able to contribute to society?

I have lost all faith in our government over the last 7 years. Because I believed in democracy, I put up with this whilst my mother was alive, thinking that it was what the country wanted. The latest allegations of VIP lanes and funnelling tax payer money to your friends whilst removing money for those in need, and the blatant disregard of the feelings of our society has made me reconsider my opinions. I don’t believe there is democracy in the UK any more. I now believe we live in a fascist state.

Please, start doing the right thing. Stop funnelling cash to those that don’t need it. Stop taxing the poor to benefit the rich, and stop dividing our wealth inequality further. The country is too divided now. We are no longer a UNITED Kingdom.

Step down from the shame you have overseen from the head of our government.

Partygate, Lies & Scandal. AGAIN.

I write to you in relation to the recent scandal involving the government. I am once again requesting that you submit a letter of no confidence in our current Prime Minister, Boris Johnson.

I appreciate that this release came during the latest PMQs, and as such you may not yet have seen the article mentioned below. I implore you to read, and understand, the damage to the public trust that is being caused by our current government.

During the PMQs of 9th February 2022, The Mirror published photographs showing Boris Johnson at what can only be described as a Christmas party (Crerar, 2022). Colleagues wearing tinsel and santa hats, alongside an open bottle of prosecco and open bags of crisps laid on the table are not considered to be the daily goings on in a work environment. Especially not in an environment that is in charge of running the country.

I also want to remind you of the recent revelation regarding the use of taxpayer money to purchase a fridge for a meeting room for chilled drinks (Stone, 2022). I wish to know if this fridge is specifically the fridge used to accommodate the “Wine Time Fridays”?

Once again, the Prime Minister has opened himself to questions of mistruths at the despatch box. I refer you to the question submitted by Fabian Hamilton MP “Will the prime minister be referring this party to the police as it is not one of the ones currently being investigated?” and the response of Boris Johnson MP, The Prime Minister “But in what he has just said I am afraid he is completely in error” (ParliamentLive.tv, 2022). 

However, the Sue Gray Update contains information that this event is not in fact being investigated by the Metropolitan Police (Gray, 2022). I wish to know if this is in fact now an additional event that Boris Johnson himself has now submitted for police investigation, or if in fact the Prime Minister has again lied at the despatch box? If it is the case that the Prime Minister has in fact lied at the despatch box, he must resign.

The publication of the image of Boris Johnson at the Christmas party (Crerar, 2022), does show that the Prime Minister has lied at the despatch box. The Prime Minister stood at the House of Commons and assured that all “rules” were followed at all times (ParliamentLive.tv, 2021). These were not rules, as the Prime Minister repeatedly chose to call them. They were laws. The Prime Minister has repeatedly broken the law, and lied to cover it up.

I refer you to the Ministerial Code (section 1.3 c.) which notes that “It is of paramount importance that Ministers give accurate and truthful information to Parliament, correcting any inadvertent error at the earliest opportunity. Ministers who knowingly mislead Parliament will be expected to offer their resignation to the Prime Minister;“ (Cabinet Office, 2019). 

If Boris Johnson does not resign immediately, you must put forward your letter to the 1922 committee to call for a vote of no confidence. Our Prime Minister has shown without a doubt that he believes he is above laws, and above the Moral Code required of our government. I am sure you are aware that your role as MP is to represent the constituents who elected you, not keeping Mr Johnson in power whatever the cost. 

Your response is very much appreciated.

Regards,

---

References

Cabinet Office. (2019, August). Ministerial Code. Gov.uk. Retrieved February 9th, 2022, from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/826920/August-2019-MINISTERIAL-CODE-FINAL-FORMATTED-2.pdf

Crerar, P. (2022, February 9). New bombshell pic shows Boris Johnson and open bottle of bubbly at No 10 quiz. The Mirror. https://www.mirror.co.uk/news/politics/new-partygate-image-shows-boris-26181071

Gray, S. (2022, January 31st). Investigation into alleged gatherings on government premises during COVID restrictions – Update. Gov.uk. Retrieved February 9th, 2022, from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1051374/Investigation_into_alleged_gatherings_on_government_premises_during_Covid_restrictions_-_Update.pdf

ParliamentLive.tv. (2021, December 1st). House of Commons. ParliamentLive.tv. Retrieved February 9th, 2022, from https://parliamentlive.tv/event/index/1cca9bf5-0921-4302-90c1-9848a9ab3463?in=12:03:06

ParliamentLive.tv. (2021, December 8th). House of Commons. ParliamentLive.tv. Retrieved February 9th, 2022, from https://parliamentlive.tv/event/index/0520c7da-d876-4a41-84c3-110b0509bf61?in=12:02:45

ParliamentLive.tv. (2022, February 9th). House of Commons. ParliamentLive.tv. Retrieved February 9th, 2022, from https://parliamentlive.tv/event/index/ed2895e3-0876-47e4-9df2-a43909693ef1?in=12:21:08

Stone, J. (2022, February 8th). Downing Street bought fridge for ‘meeting room’ with taxpayers’ money. Independent. Retrieved February 9th, 2022, from https://www.independent.co.uk/news/uk/politics/downing-street-party-no-10-fridge-b2010200.html

We have reached a scary point in humanity. An age where fact is indistinguishable from fiction.

It no longer seems that we are interested in factual, or indeed scientific truths. Truth these days, seems to be unrelated to fact, but instead, those who shout the loudest are seen to be the truth tellers.

The influence of social media in spreading misinformation

In the age of the pandemic, correct information is of increasing importance, not just due to the dangers that misinformation presents to the public, but also due to the increasing role that social media, online living and ease of sharing information has played throughout lockdowns. Whilst usage of social media has been prevalent and growing prior to the pandemic, the use of this has certainly been encouraged where interaction cannot take place face to face. Although a way to ensure interaction with loved ones, one distinct disadvantage is the lack of emotion and feeling conveyed via these channels.

Vosoughi et al. (2018)¹ undertook research to understand the spread of true and false news online. The findings are not unsurprising, in that “falsehoods diffused significantly farther, faster, deeper, and more broadly than the truth in all categories of information”. One further finding from the study that does defy common belief, is that “robots accelerated the spread of true and false news at the same rate, implying that false news spreads more than the truth because humans, not robots, are more likely to spread it.” False news was found to travel six times faster than that of true news. In an age where sharing is becoming incredibly easy, have we lost our ability to critically think, or is there more at play?

With our keenness to jump to engage with, and share new, shocking or surprising information, including false news without verifying the legitimacy of the information, can it be argued that this is caused by our demand generation? Due to the ease of information, and the speed at which we receive it, is this causing us to seek out new information, regardless of its truthfulness?

As a society, are we willing to accept misinformation from not only our peers, but our leaders? Should we be demanding more fact checking from our leaders and our news producers, despite our seeming want to share misinformation more than truthful information?

Lacking accountability for misinformation spread by powerful political leaders

I first really noticed the acceptance of misinformation during Trump’s term in presidency. This is when it became abundantly clear that we had no interest in fact checking as a society. A large number of untruths were told by Donald Trump, a politician that thought nothing of speaking before thinking.

The first of his notable lies during his presidency came in the week of his inauguration, boasting of huge crowds that were not clearly visible. BBC News referred to this as “Trump’s ‘alternative facts'” (BBC News, 2017)². This should have raised alarm bells immediately. We needed to call out the blatant lies and demand accountability, rather than being soft in this first instance.

We saw the misinformation continue to grow under the Trump presidency, with misinformation growing more dangerous as time went on. One notable point during the Coronavirus pandemic saw Trump suggesting that injecting disinfectant would be worth looking into, an idea that is not only ludicrous, but was dangerous and irresponsible coming from a President. A President should be reliable and knowledgeable, especially given that they have access to more scientific advisors and information than the general public. Given Trump’s status in society, this spreading of information, regardless of its false nature, could be seen to be credible given Trump’s access and position. Information shared by a president under circumstances such as a pandemic should be scientific, factually checked and help to lead the country through the chaos.

Evanega et al. (2020)³ dug further into misinformation surrounding the Coronavirus pandemic in an attempt to understand the main drivers of misinformation along with the themes of misinformation surrounding the pandemic. Evanega et al. studied over 38 million pieces of content published in the media throughout the early pandemic, and identified that only 16% of this referred to fact checking or misinformation, which suggests that the media had a part to play in allowing misinformation to spread. However, a yet more chilling realisation, is the part that President Trump played in the misinformation. Evanega et al. discovered that 37% of misinformation topics mentioned President Trump, and as a result concluded that Donald Trump is likely the biggest driver of misinformation throughout the Coronavirus pandemic. 

From the study conclusion, it is clear to see that the media also had a role to play in the spread of misinformation. Whilst it is clear that all information shared by Trump, both spoken and written, should have been subject to scrutiny and review, the media too had a part to play in fact checking information from briefings and debates. Understandably, humans do make mistakes, and occasionally briefings are released with incorrect information live, in this case, it is expected that once realised, this information would be corrected as best possible, such as in the case of UK Government Chief Scientific Adviser Sir Patrick Vallance ⁴. 

The decline of democracy in America

Misinformation has had a part to play in the decline of democracy in America. Whilst it is still unclear how this will play out in the long term, the short term effects of the misinformation spread by Donald Trump on democratic process is truly terrifying, and the unwillingness of lawmakers to set the record straight (The Guardian, 2021) ⁵ more worrying still.

The insurrection on January 6th 2021, by Republican Trump supporters, whipped up by the repeated pushing of the false claim by Trump of fraudulent election results in 2020 (West, 2021)⁶. We therefore must hold our political leaders to account, before we reach the extremes that create havoc in our democracy.

In the UK

The United Kingdom is no stranger to misinformation either. Brexit and Boris Johnson’s government are two recent times that instantly come to mind at the thought of falsehoods in our political climate. The pandemic and era of Trump’s presidency appears to have made the spread of false news more acceptable, especially in the political environment. The Prime Minister, Boris Johnson is accused of a number of false statements in Parliament throughout his time as leader (The Guardian, 2021)⁷. For the UK, our political system still holds archaic rules and processes, including the inability to call out deceit in Parliament, unlike in America, where politics feels more like a drama series. 

The Ministerial Code should cover this circumstance, whereby it clarifies “Ministers give accurate and truthful information to Parliament, correcting any inadvertent error at the earliest opportunity. Ministers who knowingly mislead Parliament will be expected to offer their resignation to the Prime Minister” (Ministerial Code, 2019)⁸. The Ministerial Code however, does not appear to apply to the Prime Minister himself, as these falsehoods are rarely rectified, and often given.

In an attempt to address recent misinformation by the Prime Minister, Dawn Butler was herself ejected from the House of Commons for the day (Dawn Butler speaks out after being kicked out of Commons for Johnson lying comments, 2021)⁹. What other options are left? If we cannot expect our Prime Minister to hold himself to account, and promote truth, and we cannot allow our MPs to call them out on their mistruths, where else can we go to correct the record? Do we continue to allow misinformation to spread and undermine our democracy, removing all accountability from our government?

If our ministers are not expected to tell truths and fact check their information, why would we expect that of our citizens?

References

1. Vosoughi, S., Roy, D. and Aral, S., 2018. The spread of true and false news online. Vol. 359, Issue 6380. [online] Science, pp. 1146-1151. Available at: https://science.sciencemag.org/content/359/6380/1146/tab-pdf [Accessed 19 August 2021].
2. BBC News, 2017. Trump’s ‘alternative facts’: Why the row about inauguration ‘lies’?. [online] Available at: https://www.bbc.co.uk/news/world-us-canada-38716191 [Accessed 19 August 2021].
3. Evanega, S., Lynas, M., Adams, J. and Smolenyak, K., 2020. CORONAVIRUS MISINFORMATION: Quantifying sources and themes in the COVID-19 ‘infodemic’. [online] Cornell Alliance for Science (AfS) at Cornell University. Available at: https://allianceforscience.cornell.edu/wp-content/uploads/2020/09/Evanega-et-al-Coronavirus-misinformationFINAL.pdf [Accessed 19 August 2021].
4. Twitter. 2021. Sir Patrick Vallance on Twitter. [online] Available at: https://twitter.com/uksciencechief/status/1417204235356213252?s=19&fbclid=IwAR1RPaMqXBtim7SWx-iB0XMiGwV_t2FhnGi1Mj8TZd94peNVfZ4VsP4WJFU [Accessed 20 August 2021].
5. The Guardian, 2021. Donald Trump acquitted in second impeachment trial. [online] Available at: https://www.theguardian.com/us-news/2021/feb/13/donald-trump-acquitted-impeachment-trial [Accessed 20 August 2021].
6. West, D., 2021. The role of misinformation in Trump’s insurrection. [online] Washington, DC: Brookings. Available at: https://www.brookings.edu/blog/techtank/2021/01/11/the-role-of-misinformation-in-trumps-insurrection/ [Accessed 19 August 2021].
7. The Guardian, 2021. Accusations of lying pile up against Boris Johnson. Does it matter?. [online] Available at: https://www.theguardian.com/politics/2021/apr/30/accusations-of-lying-pile-up-against-boris-johnson-does-it-matter [Accessed 19 August 2021].
8. GOV.UK. 2019. Ministerial Code. [online] Available at: https://www.gov.uk/government/publications/ministerial-code [Accessed 19 August 2021].
9. The National. 2021. Dawn Butler speaks out after being kicked out of Commons for Johnson lying comments. [online] Available at: https://www.thenational.scot/news/19463526.dawn-butler-speaks-boris-johnson-lying-comments-see-removed-commons/ [Accessed 18 August 2021].

I’m genuinely surprised by humanity. Throughout my life time, I’d thought that people were decent human beings. In general, I misjudge people severely.

I never thought Brexit would happen – I didn’t think anyone would fall for the lies on a bus and racism. I’d thought that racism was a rare thing of older generations. It turned out not to be.

I didn’t think that the Tory government would stay in power with all the benefit cuts they were pushing through and the criticisms on their handling of those on disability.

It turns out, I just hang around with the right open minded people. Because these shocks seem to keep happening again and again.

Tonight, after putting my mother to bed as I usually do, I went outside for my evening cigarette. Probably about 11.30pm. It’s part of my routine. I smoke out the front to avoid waking her by walking through our living room come her bedroom. We haven’t had the house adapted yet.

Whilst having my usual cigarette I overheard our neighbours discussing my family.

She ain’t got no legs though so why’s she standing there having a cigarette?

It’s almost like they thought she was faking her disability. Who are my neighbours to judge me and my family? These are people I’ve never met before, discussing our personal lives on the street.

Another neighbour we also hadn’t met piped up.

Nah that’s her daughter

Not that it’s any of their business, but yes, I am her daughter. And she does have legs, one has been amputated below the knee. She’s not faking for her benefits, and she doesn’t get the help she deserves.

She’s a fighter. She’s my role model. She’s been through hell and back. And she keeps going. And she doesn’t judge others, especially not publicly.

I however, did not get my mum’s traits. And I do judge others. I judged them for having their garden party on the front lawn. For having a fire on the front lawn. For having their basket ball hoop in the street and continuously having their kids playing in the street with cars coming past. For their kids hitting my new car with their football repeatedly. For the parents not giving a damn about their kids potentially damaging others property. For the parents drinking and not paying full attention to their kids. And for the parents not having the brain power to talk quieter when they live 3 doors down and want to talk about their neighbours private lives in a judgemental manner.

We might not be the stereotypical family down the street. We keep ourselves to ourselves because we don’t have the energy and the ability to get out much. We have health issues. But we still have feelings.

Now don’t get me wrong, I love my Mum to bits. I couldn’t imagine a world without her. And I wouldn’t give up caring for her unless absolutely necessary. But sometimes it can get too much. One of the things I’ve learned recently after caring for her as long as I can remember, is to take care of myself too. If I’m not well, I can’t care for her as well as she needs. So I’ve finally decided to take a long weekend off. Recharge my batteries and get some pent up frustrations out by going away for my friends 30th birthday. 5 days down in Sunny Devon.

So the time comes whereby I am about to leave. 5.15pm, time to collect my friend. I put my case in the car and go back in to wish goodbye to my mother. Her carers would be in within an hour, and my brother would be there to take over when they leave. She’d fallen asleep in her wheelchair. Or so I thought. I said goodbye, but got no response. I went over and shook her gently, calling her name as I did. But I got nothing. I lifted her head to find her drooling on herself. She still did not respond. I immediately called for paramedics and had to inform my friends that we would be running late. By the time the paramedics arrived she was somewhat responsive. The paramedics as usual were fantastic. They hooked her up to machines and decided that whilst there was nothing wrong with her obs, she had too much going on to risk it. Cue following the ambulance to the hospital and knowing I was going to be later than I thought. My mother hadn’t been processed by the time I arrived, so I decided to kill 2 birds with one stone and visit my grandmother who is also an inpatient at the same hospital.

I explained to my grandmother what was happening, and that I would see her when I returned from Devon. It reached 10pm and after settling my mother in and informing the doctors of all I knew, my family turned up to take over and give me the break I needed.

that wasn’t enough for my mother unfortunately

That wasn’t enough for my mother unfortunately, who has spent the two days I’ve been here calling me repeatedly to inform me that she does not have the medication she requires due to the hospital not being able to obtain it. I’ve since informed her that the family would be bringing it up to her.

It wasn’t enough. Apparently she feels that I should be leaving my break in Devon to bring it to her. I think this might take me longer than the family driving up after work.

Caring can be hard work. Especially when you’re trying to get your respite, and the person you care for can’t accept that.

Dropping bombs on a country but voting against allowing refugee children fleeing the conflict to come here.
That’s got to be worse than running through a wheat field.

— James O’Brien (@mrjamesob)
April 14, 2018

How can Theresa May remain in power after such a number of horrific decisions made by herself?

This time last year, Theresa May authorised strikes on Syria, without going through parliament. Taking the decision entirely into her own hands.

Since then, questions have been raised as to why parliament were not briefed in the matter prior to the event.

Whilst force can be necessary to save human lives, should our parliament not be consulted on these actions prior to them taking place? After all, our parliament speak on behalf of the people. One elected official does not represent the country.

Theresa May faced criticism for the handling of these strikes, but not enough to deter her from continuing to ignore the voice of parliament.

Since these strikes, Theresa May has continued to ignore the elected representatives of our country, and has faced no repercussions. We must stand strong and continue to fight her obtuse methods.

Theresa May continues to ignore public opinion, along with parliamentary opinions, both large and small groups. And when she doesn’t get her own way? She repeats her previous argument again and again. Until eventually others get bored of the repetition and give up fighting back.

The petition for revocation of Article 50 petition is a prime example of this. Initially, the momentum was phenominal. When signatures realised that the petition was not receiving much attention from government, the push became harder. With 6 million people signing, knowing that eventually parliament would have to debate the petition. Eventually the petition received a response from the government, dismissing it in its entirety. By the time the date had been set for government to debate the petition (April 1st I’m sure was not a coincidence), the momentum for the petition was beginning to slow. Signatures were realising that nothing would come of the debate.

I had previously thought that the United Kingdom was free of dictatorship. Lately, it does not feel so.

The next attempt to remind the government that the country would like a say in the Brexit negotiations was that of the People’s Vote March, which somehow had very little news time, and very little debate in parliament. With both the government and the official opposition refusing to make a people’s vote a part of their manifesto.

Sometimes I wonder what lengths the country must go to to be heard. It’s unsurprising that extinction rebellion are going to such extreme lengths.