A Broken System – Mental Health in the UK

People are often divided on opinions regarding the NHS, it is inefficient and often poorly run, but free healthcare is a fundamental part of our country and the staff on the ground work long hours to keep us healthy. I’ve experienced both the NHS and private health insurance, and I can tell you neither works when it comes to mental health.

The NHS

It took from November 2015 to December 2016 to get my CFS diagnosis. I had to queue up in the freezing cold 45minutes before the GP opened to get an appointment.

I was sent to A&E twice because the GP said the first time they weren’t thorough enough with their tests (and as it wasn’t urgent both times I waited 7+hours).

I was referred to a respiratory specialist, waited 4 months for the appointment, only for her in 30seconds to say I should have been referred elsewhere as it wasn’t respiratory.

I was given drugs on the off chance it was gastric, which made me incredibly ill within an hour of taking them.

I was told by a Muscular Skeletal consultant “it could be CFS”, but then just left, my GP unable to refer me to a CFS unit because I was technically still under the consultant’s care.

The CFS unit I was eventually referred to was on the 2nd floor, I travelled for an hour to get there, then had to drag myself up large steps to reach them. It seemed a foolish oversight, you wouldn’t put a service for broken legs up there!

Even after officially getting the diagnosis I’ve had pretty much no support. When I complained to my GP she said I could have whatever I wanted… What did I want? I researched a treatment and came back, but she then expected me to know my nearest provider too! I have had to become an expert in NHS bureaucracy in order to get anything done, at times my own CFS expert too.

In the meantime, I have spent all of my savings on private therapist s with CFS specialisms. I have pushed and struggled whilst feeling barely able to function. At my lowest ebbs I had to be tough and demanding, because otherwise I fell through the cracks in the system. I can’t help but think about all the people who are not as lucky as I am, who don’t have a strong support network to get them through these struggles. It is so easy to give up.

Private Health Insurance

When someone close to me had a breakdown, I recommended they use their private insurance, as the NHS had been so slow for me. Sadly we quickly discovered the private sector was no better. Due to liabilities the insurance company wouldn’t give us the name of a therapist, we had to research them ourselves then ask if they were on the “approved list”. After the first two not being on the list, the person became overwhelmed and didn’t want to continue.

I spoke for them and argued that they had the list and the postcode, why couldn’t they just tell us who was closest. I had several phone calls and emails arguing for this, but it is against policy, they would not budge. It seems like such a simple request and I strongly remember once crying tears of rage as I argued with the person on the phone – how could the person going through crisis manage when I was so overwhelmed?

I was lucky that the company’s twitter manager was more helpful – they looked into it and gave us a name. It took an hour, when I had previously been fighting for a week. I lodged a complaint, but received a letter saying that since we had booked to see a therapist my complaint had been resolved. It had not, the system that caused so much stress was still in place. They didn’t care.

What is needed

When looking for help with mental health, a person is usually in a vulnerable state.  They need guidance and neither of the two options offer that. Long waits for treatment, a lack of options, it all makes you feel defeated before you even start.

It is nothing to do with the NHS being underfunded, as the private sector is just as bad. The systems in place should be set up with patients at the centre, considering their needs so that the healthcare can make them better instead of worse!

In some areas patient centred healthcare is being trialled, and is proven to work. But the industry is old and slow, such drastic rethinking of services is unlikely to happen any time soon.

Positivity and Recovery

Last week I faced my fears and did a bit of public speaking. I did an hours session for 15 people from work about the importance of positivity. I was shocked by how much they all appreciated it.

I was raised a pessimist the way other people are raised as Christian, Hindu or Muslim. My mother’s mantra was always to expect the worst and be pleasantly surprised. However when I got ill, this outlook really held me back from recovery. I was frustrated and angry at my body for not working, and the distance between where I was and my goals seemed insurmountable and getting no closer each month.

It was once I started having talking therapies that I realised how much I was holding myself back. If I looked back at where I’d been a month ago instead of forwards to a distant goal, I could see a lot of progress. If I gave my body love and appreciation instead of hostility and anger my recovery was more noticeable.

So the tips I taught my colleagues were this:

Create positivity around you

By making an effort to be kind and polite to those around you, it makes it a nicer environment. That will lift you up. If you continue a cycle of negativity with a difficult person, you are really just dragging yourself down. Choose to be the kind of person you want to be around. Emulate the behaviours of people who make you feel happy.

Challenge your negative thoughts

We all are prone to assuming the worst, to worrying people think negatively about us, or to dreading an upcoming task. Particularly the thoughts about other’s disliking or judging us are easy to counter. We are all the centre of our own universe, and unless we are interacting with someone, we probably aren’t thinking about them. So if you trip over in public, or embarrass yourself in some way, remember that was a minute part of everyone else’s day even though it was massive to you!

When looking at an upcoming task you are worried about, think about how much you will learn from doing it, how much skill you are showing off, or how much the people you are doing it for appreciate it. Don’t put it off, you’ll only be fretting about it until it’s over, so embrace the challenge and dive in!

Be kind to yourself

When you are feeling down, imagine that all the negative thoughts are being said by someone you love. If they said those things about themselves you would comfort them, tell them how untrue those things are, how amazing they are. Don’t treat yourself any differently! You deserve all the kindness you give your loved ones. You deserve that love too. So be compassionate to yourself when you are feeling vulnerable.

Be grateful

Gratitude is a powerful tool, I could probably do a separate blog on it. The basic principle is this, don’t focus on the things that are making you unhappy. Before bed, or first thing when you wake up take a moment to think about the things in life you are grateful for, the things you are lucky to have. Many people don’t have the luxuries you do, so appreciate them instead of taking them for granted. By focusing on those amazing things or people you have in your life, you will give yourself a little positive boost to start or end your day with. It’s a simple trick to reverse your negative focus.

Overall wellbeing

It’s very easy to blame a particular thing for our unhappiness or our ill health. If it wasn’t for that one thing we would be happy, successful and healthy. Fixating on one area gives us a focal point, but it also gives us an excuse. I can’t fix that one thing, then it’s not our fault. But really, if we are being honest with ourselves, our health and happiness is so much more complex.

Years ago I attended a great talk from someone at People’s Health Trust, he said that health is being physically, mentally and socially well. It’s not even a new concept, it was the World Health Organisation definition of health back at the turn of the 20th century! We often think of health as a narrow and negative field, where we are just trying to get by. However considering it as lots of little things and that good health means all areas are 100%, can give us a higher aim. We aren’t just trying to be well enough to function, we are trying to be healthy and happy in all areas of life.

This broad view is the opposite of our focused blame. It can seem overwhelming at first, but really it’s breaking a big concept down into lots of smaller parts. Don’t let the number of areas scare you, because each one is little and easy to impact!

The way I like to think of this is as though we are a character in the Sims. Each Sim has an overall mood bar, but there is a sub menu of other bars, 6 total covering basic needs. However they now also have extra mood modifiers based on experiences, environment and fulfilment of ambitions. This makes mood much more complex.

You’d imagine a happy Sim would have their basic needs mostly met, but if a Sim has bonuses (e.g. for having fun, donating to charity, being in a nice house, making a nice meal) they can be happy even with a two bad bars!

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Likewise, having all your bars being full doesn’t get you into the top level of happiness, the Sim needs some positive bonuses as well as their basic needs being met. In fact they can be almost perfectly happy without their bars being maxed out!

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As you see the bars are green in these scenarios, but the bonuses make all the difference!

So try to imagine your wellbeing as like a the Sims overall mood bar. Fulfilling your basic needs will get you so far, but it’s the extra little things that will build you up. Just because you can’t improve one bar doesn’t mean you can’t be happy and fulfilled, you just need to find your bonuses! The little things that make a difference to your day.

 

It’s not just you

Recently mental health has had a lot of attention and it’s become much more acceptable to talk about the issues we all face.

Finding out it’s not just you can be one of the most reassuring experiences on the road to recovery. Whether that’s learning your diagnosis so you know you aren’t imagining it, or talking to someone with a similar experience, knowing that you aren’t the only one in the world with these issues can mean a lot.

When you are experiencing anxiety or depression it can feel incredibly isolating. You are trying to fight against it to keep functioning, but it can be like quicksand, the more you struggle the quicker you sink.

By talking to others with similar experiences you get the reassurance that there is hope, and it’s a great way to find out tips and tricks that others have found to pull themselves out of the mire.

To do that though we have to be brave and take the first step. Admitting to ourselves that we are not okay. That’s often against everything we’ve learnt, but it isn’t weakness to ask for help. Talking about my experiences openly I’ve often had people say they admire that I can do so. The majority of people will respect you for facing your demons, it’s something they probably struggle with themselves.

So start those conversations. Even if to begin with it’s with strangers online anonymously. Find a community that has shared experiences and support each other to get better. We are stronger together!

If you aren’t ready to talk about your issues, start listening. I’ve recently been enjoying  why am i sad? – a podcast where four people talk about their issues and each fortnight set a goal to try. They don’t always meet that goal, but that makes it even more relatable. I find it heartening to listen to other people discuss how they aren’t perfect, it’s a human connection and their suggestions for self improvement can be inspiring too.

No matter what you decide to do going forward – Remember you aren’t alone!

Taking Step One

When I’m having a bad day and my energy levels are low it often feels impossible to even think about being productive. Any task can feel huge when you look at it in that mood.

One of the best tips I’ve been given during the various therapies I’ve had during my recovery: Just plan to do 5 minutes of an activity.

If tidying up the living room seems like an insurmountable task, I tell myself “well I’ll do a tiny bit”, and once I’ve done that initial effort it’s only a short step to “well I’m here now, might as well do a little more ..” and before I know it the coffee table is clear and the pillows on the sofa are neatly placed.

If you imagine a car, when you start the engine it’s a lot of effort and noise from the car, then it settles into a steady purr. Your body is quite similar, getting started takes a spike of energy and once you are going it’s a lot less energy to maintain.

Worst case scenario, you’ve done 5 minutes of effort and can’t do more. Oh well that’s more than you thought you could do!

Often I wake up feeling like there’s no way I can make it to work. So I say “well let’s just do as far as we can body”, and I get dressed – still ok? – do more of my morning routine – don’t feel awful? – slow walk to the station etc etc. Even if I don’t make it the whole way into the office, or if I do but can’t stay long, it’s more than I thought I could do. I’ve exceeded my expectations and that feeling outweighs any bad feelings about not managing 100% of my goals.

One caution though – when suffering with fatigue beware momentum! I know I’m incredibly guilty of getting caught up in what I’m doing and overexerting myself without noticing. So always make sure to pause and check in with yourself at regular intervals to make sure you’re doing okay!

Brain fog!

In the journey of recovery from CFS I’ve had to do a lot of work learning to trust me body. I’ve learnt to listen to the signs it gives me and respect its limits. It’s not the easiest thing to do, and I still have moments where I push a little to far, but we are now working together instead of against each other.

For me one of the hardest parts is still the brain fog. I’ve learnt to trust my body, but my mind can’t always be relied upon! Just last week I put a load of clean, dry washing back into the machine instead of the dirty pile next to it. When I realised an hour later I was livid with myself. However, that isn’t productive. It doesn’t stop me from doing the same thing this week.

With my gradual build up of time at work, the brain fog has been my biggest anxiety. As an assistant I need to be vigilant and on the ball, if I’m easily confused or making mix ups, how can I do my job? I’ve had to accept that sometimes I’ll make mistakes. Perhaps they are mistakes I would have made before I became unwell, but now I am much more focused on them and taking them more to heart. The truth is everyone makes mistakes. The more energy I put into worrying about making them, the less I have left to try to do my job in the first place! Objectively I am fine 99% of the time, but by focusing on that 1% I make it seem so much bigger and more frustrating.

The best solution I have found is to slow down. When I rush myself I am more likely to mess up, so I have to resist the urge to be a whirlwind of productivity and focus on each task one at a time. I also try to leave time to double check things once I’m finished. I accept that I am human and I won’t always get it right, but by setting up my day to give me the best chance of catching any mistakes, I am setting myself up for success. If I just fret about what my limitations are I am choosing to do less, and that isn’t what I want for myself.

The Background

So who are you and why are you writing this blog?

Great question nonexistent person! I was diagnosed with Chronic Fatigue (CFS) in 2016 after a year of bouncing around NHS departments. In the last two years I’ve tried lots of different things to get back to good health, and I’m now in the process of going back to work.

As a ‘spoonie’ (a chronic sufferer slang word I love dearly), I’ve learnt a lot about myself and my outlook on life. I recently wrote a blog for my work about mental health in the workplace and I really enjoyed sharing my thoughts. Not that anyone who knows me would be surprised by that, I do love the sound of my own voice!

Jokes aside, I am hoping that by sharing some of my thoughts and experiences, at least someone out there in the wide web will feel like they aren’t alone, and that they can have hope of getting back control of their daily life, even if it’s just a little bit (we spoonies are very into small victories).

So welcome, and I hope that even if I’m not helpful, I’m a little thought provoking!

All views are my own, based on my experiences.
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