Is the NHS sickness system fair to people with disabilities?

I’m writing this from my bed, because I’m once again sick. Only this time it’s physical. I came back from a lovely holiday in Amsterdam, with a cough and a sore throat. A bit annoying, but no problem - I usually get over colds in a couple of days, plus I’m used to going about my daily life not feeling well. I had one day at home before going onto my night shifts. I found myself getting rapidly worse and the lack of sleep certainly wasn’t helping. By the second night I was feverish and coughing badly. I knew I shouldn’t have gone in, but I’ve had so much time off for mental health problems that I was scared to go through another sickness review, let alone not get paid. After my nights I found myself bed bound. Fever, dry cough, aches and pains and a tight chest. On Monday evening I had a coughing fit so bad I almost passed out. Still I was determined to go to work. 

So here I am, suffering and extremely upset that I had to call in sick yesterday. I’ve not had a single day off since my last breakdown in September. Now I’m here tearing myself apart because I can’t physically work and I’m terrified of losing my job. 

The NHS uses a system called the Bradford Score to monitor sickness. It works by combining your episodes of sickness with the number of days you take in each episode. So in theory having 3 separate episodes lasting 1 day each should give you a higher score (the lower the better) than having 1 episode lasting 3 days. This sounds like it should actually be better for people with disabilities and long term mental health problems; that’s what the NHS claims also. 

But think about this: 

• You have an emotional breakdown a year into your new job. You get hospitalised and have to take long term sick.
• You’re not getting paid after 4 weeks, but everyone encouraged you to do what’s best for yourself.
• When you return measures aren’t really put into place (flexi-working), because of poor management at the time. Without reasonable adjustments you cope about 3 months before you relapse again.
• This time changes are made and for a while you’re doing fine again, enjoying work. Time goes by and your Bradford Score is about to improve.
• Then you come down with some sort of flu.

You see, having that one or two days off for a physical illness, will then massively put up your Bradford Score and you could potentially be looking at a stage 3 sickness review and a possible dismissal. 

Despite giving everything to your job. 

Despite being told you’re good at what you do. 

Despite loving the difference you make.

So you tell me how this system is fair for people like me? I’ve tried so hard to stay in work. I’m lucky that I have gained the skills to manage my BPD for the most part, but many others don’t have that. I feel like I am almost constantly punished for fighting to get my life back and keep it. I can’t understand why our society makes this so difficult. 

So enough complaining! What’s the solution? 

I’m no HR manager, but what if there were two separate systems? One for sickness related to your disability and another for sickness unrelated to your disability. Is it really hard to imagine such a system. Having separate records would ensure people with disabilities weren’t penalised for a short unrelated illness, in the same year as a flare up. It seems to me more logical than the current one and a lot fairer. People with disabilities have so much to bring to the workplace and this is no different in the NHS. So why should we be discriminated against for looking after our health? 

Honestly I believe more needs to be done so people with disabilities aren’t punished for trying to work. I’m doubtful (at this time) that organisations that use the Bradford Score will be willing to change their systems. However, the more people that know and understand how this practice discriminates, the more chance we have of people taking a stand.  

  

What we build our self-worth around.

Self-worth is a topic that resonates strongly with many people with disabilities and mental health conditions. It rules the way you see yourself in relation to the world around you. Increasingly it seems to be about whether the skills you bring to the table can make someone money. I want to talk about where these attitudes are coming from, why they are harmful and what we can do as a society to combat this. 

“What do you want to be when you grow up?” 

A question that most of us were asked from a very early age. When you’re 7 years old you can answer this anyway you like. I mean unless you wanted to be Charizard… yeah I was a weird kid. By the time you reach secondary school however, it all sort of slips out of reach. I remember at age 13 I told my mum I wanted to become a writer. All I ever did was write; stories, diaries, music and poetry. I loved to read and spent my time escaping into Harry Potter books and the Darren Shan Saga. Imagine my disappointment when my mum discouraged me because ‘it wouldn’t make me any money.’ Our society often discourages music, art or creative writing, saying it should only be for the elite; the best of the best. What she and others said to me about this, kicked my confidence enough that I dropped the idea of a writing career and didn’t show my writing to anyone for years after. To this day I still don’t show my fictional writing to anyone. As I got older and was asked to make decisions about my future, I tried not to think about what I really wanted. When pushed I would talk a little about creative arts and I was always discouraged with, “don’t you want to have a career?” 

By the time I got to college I was completely aimless. I took A levels in psychology, biology, philosophy and photography. Why? No idea at all. I just wanted to find something people would be pleased with. The thing about studying subjects you’re only mildly interested in is you’ll probably do badly in them; which I did. The point I am trying to make is: At some point I knew what I wanted to do, but because it wasn't seen as profitable, I abandoned my dreams at age 13. 

I don’t blame my mum or the school careers advisors at all. They were only trying to help me out in the best way they could. They were teaching me exactly what they were taught; what most of us are taught. Our society mocks those who create, because it’s seen as being a ‘cop out’, like we’re just trying to avoid ‘real work’ that makes money. People rarely see art as a career choice. It’s not only the arts though. How often do you see people in roles such as cleaners and fast food workers laughed at for not earning enough? Who was told at school that if you didn’t work hard you’d end up flipping burgers? Certain jobs are seen as ‘better’ than others; causing a divide between these workers and those earning more. It creates an ‘us and them’ mentality, and I'm not sure that's entirely an accident. Conspiracy theories aside, we also live in an era where most people don’t have a lot of time to appreciate art. When money gets tight, we know that the creative arts are the first things to go. 

So why should we encourage creative arts in those who love them? Firstly, everyone starts somewhere. We have no idea of the talent we may have discouraged. You can only become good at something by practicing. It's important we teach children that they don’t have to be the best at everything in order to succeed. Believe me all that does is lead to anxious and overly eager to please adults, who think they have to fight to the top of the pile to be accepted and loved. Secondly, art and music does wonders for mental health. Doing something that brings you fulfilment, enjoyment and gives you a way to express yourself, can never be a bad thing. Thirdly, self esteem. Creating a piece of work that you are proud of can really make you feel in control of your life. Like you have worth, which is so important in a society that constantly questions it. 

What can we do to combat this idea that the only worth comes in the form of money? Mostly it’s about taking small steps to encourage ourselves. To go beyond what people are saying we should do and really taking a long hard look inside. If you want to draw, paint, sing, act, dance, or even write a blog, then do it! Don’t think about the money, because money isn’t the route of all happiness. Currently I make no money from what I do on here, but I love it. I can share my experiences and reach out to people I never usually could. It’s also therapeutic for me to be able to express my thoughts and feelings. It’s easier to write it down than to speak with someone face to face. Another thing we can do is to teach our families, friends and children that not everything can be bought. We can stop making fun of people with low income jobs and stop treating their roles as a punishment for not working hard enough at school. Bring your children up in a world that respects differing abilities and teach them this: 

You don’t have to make money from something for it to be worthwhile.  

See you later 2019

From what I am hearing from people, 2019 was a tough year. In the UK it was very politically charged and there was a huge amount of negative energy at every turn. Especially for those living with mental health problems and disabilities. Austerity has been hitting us hard for the past decade and I think some of us are coming to the limits of what we can cope with. Dual cuts to disability benefits and healthcare are leaving us in a position of desperation. So it’s no wonder we might feel as if we’re falling apart. 

I wanted to talk about the hard things that have happened in my life in this past year, but also the good that I’ve seen it in. And, how this next decade can hopefully be one of growth and wellness. 

It’s been a rough year… There is no denying that. 

• I started off the year having an emotional breakdown, following a serious suicide attempt. I was admitted to hospital and I hit my lowest point since 2014. I had to have three months off sick from work and I really thought I was going to lose everything. I eventually went back to work, but I questioned if I could really keep this up.

• My relationship got tough, because life got tough. And we felt as if we just couldn’t catch a break. I was terrified five years of our life together was coming to and end. 

• I fought a battle to get the therapy I need. I wondered if I was going to be abandoned by services once again. 

• In my struggle I lost some good friends, as I withdrew from the world. Some of them I got back, but I think the others are gone for good. 
• The eating issues came back and everytime I looked in the mirror I despised my body. I found myself starving myself for days, eating too much at once and then making myself sick in guilt. I put on weight because my eating habits fluctuate so much. It’s a vicious cycle.
• The night after the general election we stayed up to watch the results come in. I was so angry with the results, because I really didn’t think people could allow a government to stay in that made people with disabilities second class citizens. We have family so I know we’ll never be on the streets, but I thought about those without that privilege. 

But there’s also been so much growth… I’m looking to the future.

• I broke through my mental health nightmare and swore that I would fight my BPD and survive no matter what. I used my experience in hospital to write an article that was picked up by boredpanda, that then went viral! I went back to work and cut down my hours in order to cope and stay employed. I’m now getting on a lot better and can continue to make a difference in people’s lives. 
• My partner and I got through our difficulties together. Our situation hasn’t improved yet, but for the first time I didn’t panic and run. We will work through this together, because apart we don’t stand a chance.  
• I refused to lay down after they told me I wouldn’t be getting DBT. I worked tirelessly to finally be heard. I’ve just received the news that the DBT group starts at the end of this month. 
• I learned that some friendships end and there are others that don’t. People come in and out of our lives all the time. It doesn’t mean that we did something wrong. It’s just a fact of life. 
• I learned to be kinder to myself about my body. I said no to old eating disorder habits creeping back in.
• The night of the election results when I was so afraid of what would come over the next five years, my partner told me he would love me and look after me no matter what. He has always stood by me and I know that will never change. We have another five years to build an argument for a better government and a society that cares for others. 

I want to say thank you to everyone who made last year possible for me. I couldn’t have made it without the support and love of my friends and family. 

With everything that has been going on these last few years around the world, I really wish everyone the best for 2020. Stay strong, love yourself and each other. I’m going to continue doing what I love to do, which is helping people; in both my work and here on this blog. 

Out of Darkness Xxx

Happy New Year!

Hi all.

I hope you’ve had a good holiday period, and if it’s been tough then I hope you can find some time for your own health this January.

As for me I’ve really had a long, long year of it. Living with BPD is definitely an ongoing struggle, year by year, but this one has felt particularly rough. I started off 2019 in the biggest breakdown since the first one that lead me to the BPD diagnosis in 2012. I was admitted to hospital and had to take 3 months off work. I really thought my life was going to be over and I was going to end up out of work and lose my flat. The whole year after was spent trying to recover and trying to prevent it happening again. Myself and my partner put all our efforts into trying to get me Dialectical Behavioural Therapy. We knew it was the recommended therapy for BPD and I’d heard of so many people whose lives had been changed by it. Without it we knew my life would continue to be at risk from suicide attempts. It was worth fighting for. In September I slipped up again. The desperation was getting to me. 

I’m happy to announce that I am now starting DBT this month! Part of me is so relieved, but the other part won’t believe it until I’ve been to my first session. Blame it on the trust issues I guess. 

The year has been a bit of a roller coaster, but I’ve held on for dear life. I’m still going to be posting here. And I’ve got a yearly reflection coming up very soon; plus more in the works for 2020. 

I don’t have any new year's resolutions per se, but the goal is to keep improving and to keep on posting. I wish you all good luck in the new decade and hope you’ll stick with me. 

Out of Darkness. Xx

Why I'm voting Labour as a person with a disability.

As a 27 year old woman with a chronic illness/ disability, I’m going to be voting labour on the 12th of December and here’s why. 

It’s hard to keep your blog from being politically involved when you write about so many issues that are affected by the decisions made by those in parliament. If you’ve come here via my twitter account you’ll know both myself and my partner are strong Labour supporters. Part of that has come from our own experiences and the experiences of those around us. 

Growing up, my family never had much. Mum became a single parent when I was ten. She was an absolute inspiration to me and my brother, who was ten years younger. We never went hungry even though mum did. We were a family that always believed in working if you were able to and mum always did. Luckily I had always been a healthy child, but my brother spent the first few years of his life in and out of hospital, because of life threatening asthma attacks. Even so I don’t think I really understood the importance of the NHS until I was diagnosed with Atypical depression at age 19. 

I relied heavily on the NHS for my basic survival. Without the medications to dull the suicidal and impulsive thoughts in my head I don’t think I would have lived past 20. I can only imagine the horror of the bill I would have received in a healthcare system like the states has. It’s likely I just wouldn’t have been able to afford treatment. The thought of the NHS being sold off to private providers throws me into a spiral of panic. It’s something that has already been happening under the current Tory government and if we’re to believe the leaked documents (which most of us do) we can expect a lot more of this.

When I was diagnosed with EUPD/BPD I started to understand the struggles people with mental health issues went through to get treatment. I have been conditioned to be used to a low quality of care but under the current government, services are at breaking point. At one time I was left without mental health care for six months, whilst the NHS attempted to transfer my care. Upon investigation it would appear that the whole issue was a paperwork problem likely caused by the lack of admin staff. With no community care team available to me and no way to get my medication reviewed (my GP refused to touch it), my mental health deteriorated rapidly. I couldn’t work, I rarely left the flat and I became actively suicidal. I realised that I could have easily become another in the 130,000 preventable deaths caused by austerity. I received emergency care only. I was admitted to a psychiatric ward on a few occasions, where the staff were overworked and burned out due to high patient levels and low staffing levels. The overcrowding got so bad at one point they had to send a young man to the dementia ward to sleep for the night because there were no beds. The hospital budget was so minimal that they didn’t have the funding to provide patients with essential sanitary products. From what I hear my experience is common. Thanks yet again to Tory refusal to properly fund mental health. 

It’s not just a healthcare problem. If you have a disability or chronic health problem you will probably be familiar with the benefits system and the lengths you have to go to for financial help. The assessments are deliberately brutal and designed to make applicants doubt their own ‘validity’ in their claim. These assessments have driven many to self harm and suicide. A personal friend of mine who suffers from an eating disorder lost her PIP, because she ‘only’ starved herself four days a week instead of five. Under a tory government the message that gets repeated is “Your only worth is the money you make us.” This ethos means if you are disabled, if you aren’t able to work full time, if you need extra support, “Then you are nothing to us.” I’m not prepared to give my vote to a party that treats people as property to simply be thrown away. 

Austerity has been a lie. We have not been “in this together” as we’ve been told. The rich continue to get richer. The tories represent millionaires who refuse to pay their fair share, mega-corporations who dodge taxes, greedy landlords, Bullingdon club wankers who burn money in the faces of the homeless and exploitative employers. They represent money, greed and corruption. They do not care for the most vulnerable in society and they never will, it is not in their best interests. 

So what can we do to tackle these parasites and try to get some humanity back into our leaders? Well in my opinion, vote Labour. Their manifesto has been increasingly positive. They’re promising new funding for our essential services such as the NHS, social care and teaching. They’re investing in the future of green energy rather than denying us a future at all by willfully ignoring climate change. They’re tackling poverty and inequalities such as the wage gap between women and men. They have been doing so much to include young people in politics and have engaged youth like no other party ever has. And as for Jeremy Corbyn, he has always been on the right side of history. At Grenfell he was there. The Yorkshire flooding, he was there. I have always seen so much passion and compassion in Corbyn; the likes of which I have never seen from Johnson or Swinson. 

The main argument I have seen against Labour is that such spending plans can’t possibly be funded. Every time the counter argument is yes it can and it’s coming from the top 5% of earners; people earning over £80,000 a year. One such earner described his weekly tax increase as “the price of a bottle of wine”. That’s it, that’s all. To see poverty decreased, to see the NHS stabilise, to greatly decrease homelessness, to see your elderly and young people get the care they need. Labour also wants to make sure that big companies aren’t dodging taxes and are paying their fair share and that they must pay their employees a living wage. A vote for labour is a vote for fairness, and in my opinion a vote to avoid another five years of torture and uncertainty for people with disabilities. 

There are so many more reasons for you to vote Labour and if you’re still on the fence, then please go and check out their manifesto. I trust them far more than I will ever trust the Conservative party and I believe the country is beginning to see that. Please vote in this crucial general election and see what a difference you can make to the place we call our home.

Where I've been instead of here

Hi everyone

You might have noticed I’ve been pretty inactive for a long, long loooong time. I wanted to give you an update on what’s been going on my end. At the end of 2018, I finally got the good news I was waiting for. I had a meeting with the head of the complex needs service and we discussed that I had been trying to access DBT for some time; with no luck. Until recently that therapy had not been available in my area. She told me that DBT was now being provided on the NHS where I live and she said she would be referring me. She said she felt it was the right treatment for me and it would really help finally take back control of my life. 

I will write in more detail about this in a longer post about the process I’ve had to go through. But just to say I have had to fight tooth and nail to get this life-changing recommended treatment and I think that’s appalling. I am someone who is often able to pull together the motivation to get up and argue about a decision in my care. But, I often worry about others who aren’t able to do this, or haven't got a good support network behind them. After I threatened a complaint for poor service and a failure to follow the NICE guidelines on BPD treatment, they finally allowed me into the DBT group. I still don’t know when this will be starting, but I should receive a letter before the end of December. Fingers crossed I don’t have to make any more fuss, because I’m exhausted. 

Thank you for being patient with me whilst I get myself recovered from all this stress. My friends, family and supporters have all been excellent too. 

I’m hoping to get back to work on my blog posts at the end of next week. Also I’m looking to write about the political situation here in the UK (with the upcoming general election) and how it affects people with disabilities. 

More stuff coming soon.   

Out of Darkness. Xx

Sensory Overload and Coping with Change.

Some of you may have heard of the term “sensory overload” before. For those that haven't, it’s when one or more of your senses experiences over stimulation. This comes from the environment around you eg. loud noises, bright light or colours and crowding. It’s very distressing and can cause the person experiencing it to become agitated, anxious or even to go into a mental meltdown. Anyone can experience sensory overload under the right conditions. The most commonly known group of people who are vulnerable to this are those on the autistic spectrum, but did you know there are other disorders that can also be affected? People with ADHD, anxiety and certain personality disorders are known to struggle with this issue. I’m going to be explaining my experience of it as someone with Borderline Personality Disorder. 

As we do every Tuesday, me and my partner had gone to do our food shopping. We usually go late in the evening, but for some reason we had come earlier in the day. My local Lidl is the place we visit consistently as they always have the things we like to buy and it’s relatively cheap. I enjoy the way they lay things out and have my own little route I take, which is the same every week. As we were walking down the first aisle I found myself feeling a bit lost and felt my throat tightening. There were a lot more people than usual, but I could cope with this level of anxiety. By the time we got to the top of the aisle though, I felt positively sick. Taking a moment to look around I realised the entire layout had been changed. My items were not in the places I would usually find them and large double height freezers had been installed. The lights on the freezers were extremely bright, the noise level was high and I was having to navigate around people with a large trolley. When we got to the freezer section I realised that I was heading for a meltdown. In all honesty I felt stupid. How could it be that someone as functional as I was, was almost crying over a change in layout? My partner was supporting me and I tried to laugh it off and hold back my tears. My head was pounding and my ears were ringing. I could even feel myself beginning to disassociate; a natural coping mechanism I have. 

Luckily I managed to make it through my shopping trip without a major meltdown, which I’ve experienced in the past. The one that always sticks out in my mind was when I had a full on breakdown in a shopping centre, where I got furious with my partner and ran out of the shop (Yikes). When I was younger and less aware of what was happening to me, I didn’t even realise what was causing my meltdowns. I haven’t had too many in the last few years as I’ve managed to improve my emotional resilience. I’d been feeling particularly fragile during that week so it’s understandable I didn’t cope as well as usual. 

Many people with non-neurotypical tendencies like BPD and Autism rely heavily on routine and structure to cope with day to day tasks. Even small changes could throw us into a blind panic. But I have found ways to manage my stress and try and avoid overstimulation whilst in public. 

• Avoid busy times - We tend to go shopping at around 7pm. You can’t always help it, but it’ll save you a lot of stress if you can plan your week differently. I also do all my christmas present shopping early as I can’t deal with the garish colours, bright lights and screaming children that the holidays bring.
• Take a friend/carer - Essential for me as I can’t manage the whole shop on my own. If you’re going to be going to parties or events where you might get sensory overload, it always helps to have a supportive person you can trust with you. 
• Make a list/plan your route - I find this really helps to keep me focussed, so I don’t panic when I have to make decisions about what to buy or where I’m going.
• Remember to breathe - I always forget to do this when I start to experience sensory overload. I hold my breath as I’m gritting my teeth and it makes me feel even worse. Practicing mindfulness when you’re not stressed helps you to use it when you are. 
• Regularly get out of your comfort zone - I know you don’t want to because it feels like hell, but getting out and doing the things that make you a little anxious will help you to be more resilient. Every so often I pop to a smaller shop to get a few bits on my own. It’s stressful, but it builds confidence.