The 'B' Word

"What are you fuckin lookin at"!

When you're drugged to the gills with painkillers and anaesthetic, with a drain and catheter and feeling very vulnerable, this was not what you wanted to hear. I was unable to move and stressed and whoever was shouting in such an aggressive manner wasn't helping. Lookin at? I was looking at no one, I felt rubbish and just wanted to be left alone and to go to sleep. I tried to identify the culprit. Hopefully, without drawing attention to myself. As it turned out that was a big fail. 

"I asked you what are you fuckin looking at?"

In the bed opposite me, lay its patient, or perhaps more accurately, sat its patient a short, red-haired, bearded man, who was staring at me shaking in anger. "Oh crap, this could get difficult".

"I'm going to fuckin smack you", 

Great there was no staff about and here was a violent psychopath on the ward promising to give me a beating, could things get worse?

Fortunately, hearing all the shouting, the Ward Sister came rushing in and got him back to bed, eventually settled him and to my massive relief, he went to sleep. 

I have never felt so vulnerable.

But what has all this got to do with Parkinson's and Brexit? 

Without going over old ground in too much detail, Parkinson's is a progressive condition; over the long term, my condition will continuously decline and get worse. How I feel today is as good as I'm ever going to feel, this time next month my condition will be worse and there is no way back. However, a complicated cocktail of drugs will be used to keep me as active and independent for a longer period of time than my body would manage without them.

Even if I were to exercise 16 hrs per day. Which is not going to happen.

Without the right medication, hundreds of thousands of lives will be at best crippled, at worse shortened. However these drugs simply mask the condition, they don't slow it down and they don't cure it. They will be required for the rest of my life. My quality of life is dependent on them and access to them. Of course, we are fortunate to live in a stable, economically advanced country, which has assured access to required drugs and medication.

Then in 2016, we had Brexit. And all the security and stability were put at risk.

Brexit was the end result of a long battle, over decades between two bitter and determined camps, with completely different visions of the future. I'm not going to go into all the pros and cons of each position, suffice to say however the referendum was toxic and divisive and was a wonderful example of modern British politics. Each side deployed a wide range of tactics, dependent on lies, exaggerations, slander and vicious personal attacks on their opponents, not always deserved.

And just like the Scottish referendum, the scars have not yet healed.

A disclaimer here, I have a foot in both camps. My head said stay, my heart said leave, however at the ballot box I went with my head.

One of the big referendum issues was trade. Britain had no trade deals with any country in the world, as issues to do with trade were an EU competency. Once we left the EU, unless we had managed to put trade deals in place, we would be dependent on WTO rules. Which would have been a disaster and 'Global Britain' would have suffocated under a tidal wave of new and expensive rules, slowing trade and putting our manufacturers at a severe competitive disadvantage. 

It would potentially lead to critical shortages in the UK, including such things as drugs and medical supplies.

According to a Nufield report during the period of negotiations leading to exit from the EU, the EU threatened the UK with export bans on drugs and medication.

Nice. This sort of thing is why my heart and head don't agree. 

The report showed that 9 months after the introduction of customs barriers, that trade had been impacted;

"Trade data shows that the introduction of customs controls and transport requirements on January 1st had exactly the effect that was feared on supplies from the EU. Medicine imports from the trading bloc – which have historically made up two-thirds of NHS supply – crashed to their lowest level in years. Even now they have recovered only quite weakly compared to earlier years: they have been below their 2016 level for the whole of 2021".

 

And this did have an impact on the availability of Parkinson's drugs. For a short while, my usual Pharmacist was unable to supply me with my prescribed medication and advised that he was unable to guarantee supplies going forward. And unfortunately, I ran out for a thankfully short period before I was able to find another pharmacist with availability.

 

However the next time I needed a prescription, availability had been restored.

 

But it was still a shock. My confidence was a bit shaken, It was brought home to me that I was now more vulnerable than I previously realised and that events outside my control meant the complacency that we had always enjoyed in the UK about the availability of our medication was no longer true. 

 

I had read articles in papers where idiots had told the reporters that they were willing to risk losing access to their medication, in order to get 'Brexit done. Very self-sacrificing of them I'm sure, but why do they feel able to risk others' access to their critical medication?

 

In some ways they are as scary as the patient in the bed, shouting "what are you fuckin looking at". Not as immediately threatening perhaps, but just as stupid and contemptuous of others. 

Severe illness or life-changing conditions are problematic enough without the added complication of the fear of not being able to access your medication. Having your vulnerability hammered home is sobering, it brings to stark relief the reality of how much of an illusion is your belief that you are in control.

Maybe that's a life lesson for all of us.