Thursday 22 August 2019

What would no deal Brexit mean to us?

Concerns about the supply of medicines in the case of a no-deal-Brexit led me email the pharmacist at our hospital. I got a reply, that while understandable, was about as helpful as an itchy arse when you suspect the kids might have worms; 


An evening dose of meds. 

‘Unfortunately we would not supply above and beyond normal supplies of medicines. If we started to do that, then the current supply chain would fall down quite quickly before we get to Brexit. NHS England are monitoring the current situation to ensure additional supplies are not being made and stockpiles are not being held. The Department of Health / NHS England are working up strategies for supply of medicines in the event of a no deal Brexit’. 

Weekly tablet organiser (add on inhalers, nasal sprays, nebuliser and IV drugs). 

According to a recent white paper published by the Business, Energy and Industrial Strategy Committee, 73 per cent of pharmaceutical imports in the UK come from the EU. This equates to around 37 million packets of medicines every month from the EUworth £18.3 billion.

This is SCARY shit. 

Now, there are some medications people with CF could manage without short-term (the high dose vitamins which they cannot absorb from their diets as healthy people can, the slow release sodium maybe, the acid inhibitors at a push?)

But the Creon (enzyme replacement therapy, which allows the breakdown of fats and proteins which cannot otherwise be absorbed, of which he takes 15-30 a day, and would have agonising tummy aches and no weight gain/growth without) the oral, nebulised and IV antibiotics, the anti-fungals (in Isaac’s case right now, very important) and the steroids....being without these, even for a short time, could be catastrophic. 

Scarier still, delay to flu vaccines (due around the time of Brexit and which have a super short shelf-life), have already been indicated as a nationwide crisis waiting to happen this year, likely to kill thousands at high risk. Not to mention the risk to diabetics and others with chronic illnesses or cancer. 


Our dry meds cupboard. We have a whole shelf in the fridge too. 

Anyway, there is enough catastrophising already (not only in my own head) - what we need now are answers and assurances that our most vulnerable in society will be protected. Assurances that we can actually believe in. Where is that??? 

On a positive note; we are well over our fundraising target for our epic 43 mile trek in June. Check it out here! Thank you so much, again, to my incredible team for walking over 17 gruelling hours, laughing most of the way, and for all the amazing support we have had. This now means our family and friends have raised over £80,000 for the Cystic Fibrosis Trust since Isaac was born. To all our lovely family and friends, this is all down to you, Love, love, love x 




Wednesday 21 August 2019

Isaac said to me tonight...

“I can’t believe I’ve been well this long”.

Which is both something to celebrate, but also to recognise. He was last on IV drugs to calm his lung infections down in June. When did two months become a good run? 


Saturday 17 August 2019

Summer.

This summer we are home (having holidayed in May quite expensively). A mix of work and home, day trips, the pool in the garden (we have an over ground pool we set up each summer which Dan has built an amazing deck around it, meaning the kids jump in and out all day) and long dog walks. Yesterday we had a family wedding (thank you so much to Alex and Becky for not only sharing their special day with us, but also for holding a raffle which raised an amazing £560 for the CF Trust). It’s actually been really good to be home. Dan is likely to have three lots of surgery later this year (hernia, vascular surgery due to repeated thrombosis and a knee op for a torn ligament; my poor broken husband) - he’s OK, but it all needs doing, so it’s good to squeeze in some fun before all of that.  Isaac is doing really well.... the anti-fungal drugs really are reducing his symptoms overall (we think), and right now, the only troublesome side effects are his poor cracked lips which bleed. Having last had IVs in June, we’re feeling pretty smug that he is still so well.... if he can last until at least September (or beyond?!) before his next IVs - that would be fabulous. 

Some rare pictures of my lesser spotted teen, and his gorgeous sisters (and cousins Ben and Bodhi). 
Wishing you all a wonderful summer x