I know I'm annoying but..

[Hazardswan]

Over the summer the technical notices were released, this is the government's offcial plans in the event of a no deal with the EU.

They have asked private drug companies to stockpile a 6 wk supply of 200 meds.

1. For context, there are over 20 drugs to treat epilepsy alone and there are 250 drugs which treat ME. Thats 270 medications for just two disorders. So I am screaming that the plans are shite.

1. I asked John McDonnell yesterday on mumsnet webchat questions relating to disabity/illness and brexit. He ignored me. I've contacted my MP he ignored me. I've contacted the Labour party directly and they have ignored me.

1. I get i'm annoying, but as a full time carer to someone who takes loads of medications I CAN'T NOT BE ANNOYING.

1. Labour front benchers claim they'll vote down any deal that doesn't meet it's targets and want to force a General Election at that point as they want a go negociating. There's no guarantee labour will win or do a better job.

Contact your local MP. Tell them that the back up plans for no deal are shite.

Easiest way to do that is via Gina's website...

endthechaos.co.uk/contact-mp/

Mumsnet @JustineMumsnet @KateMumsnet @RowanMumsnet thank you again for the survey you carried out. Fancy doing another on this specific area? Also could this be left in chat? Thank you again for all the work you do

Signed and shared!

fun it's because it's a multi system condition, severe ME comes with many symptoms. There'll be medication or two or three for each symptom. There has been some success with using anti-viral meds for ME I believe but that's not wide spread practise across the UK.

Massive derail but ME is handled appallingly in the UK and patients really do deserve better and they are not going to get better care until the NHS stops failing.

NHS not going to get better until it gets more money and yet here we are on a thread talking shite plans for a no deal which will damage further.

FYI I have a link for the 250 meds for ME if anyone wants it. I should also add I don't have nor do I care for any one with ME and I just stumbled into learning about it thanks to looking after someone chronically ill.

Lost don't think just act. sign petition, contact your mp, contact your doctor.

Some doctors are writing 3 month prescriptions from March these tend to be specialist/consultants. Many GPs are idiots and don't have a clue what's going on - nothing new there then!

Once your sorted don't worry... we'll stop brexit because you, we, deserve better than this shit show.

Desert cheers your an

A friend of mine is already having problems getting meds
Heart meds, anti-depressants, anti-psychotics, pain relief and a few more that I'm aware of.
Same friend is autistic and cannot comprehend why there are no stockpiles, why only one month's supply was given when he'd been told it would be six months worth, and why nobody knows anything.

Marklah things are illogical atm it's very hard to understand and extremely frustrating for patients. Sorry to hear your friend is struggling to get hold of meds already.

Where my friend lives, health care (particularly mental health) and support is poor. Friend has suspected Lyme's disease but most GPs' have been dismissive because of his autism. He can't afford to go private and so now is in a queue of 'ruling other things out' tests which seem to be terribly protracted an unnecessary.

I'm sorry to hear that you are in such a difficult situation too.

Hazard Thanks :) Petition signed. Will share it on social media too. Will contact my MP but he's useless so I'm sure I'll get ignored. GP however is brilliant so if she somehow isn't already aware I'm sure she'd want to know.

We need to get this sorted for people any way we can. I knew it was going to be bad but didn't realise it would be this bad so anything I can do I will.

marklah I've heard Lyme disease is a tricky one to pin down sometimes. Immunology is not the NHS's strong point. Hope your friend gets the help he needs soon. You sound like a lovely friend, your support means a lot I'm sure.

Lost that's fab! So happy to hear your GP is good it makes life easier. Don't worry about being ignored....I try not to take it personally

Lost a good GP is hard to find! Glad yours is proactive.

Here's a template and tips for contacting your local MP.

It's people choice ref based but can be altered if that's not your thing and you just wanna let them know the plans for no deal are shite.

www.ofoc.co.uk/write_to_your_mp

Thank you both. I know how incredibly lucky I am to have such a good GP, especially when so many people don't - she's amazing. Will print out some info to leave with her at my next appointment. That way she'll have the full facts on top of my concerns.

Hazard Thanks so much for that template thingy. I am not the best at writing letters/emails so something like that is perfect, thanks. Will personalise it obviously, not that I think it will make a difference.

I have emailed my local MP. I have outlined your concerns re medications; in fact, if you don't mind, I copied some of your op in my message to him. Brexit affects me in many ways but I don't rely on any prescriptions other than for controlling my blood pressure; I realise however that it is simply unacceptable that leaving the EU without a deal will potentially mean that millions of people go without medications they need to survive.
I live in an area where the overwhelming majority of people voted to leave though and are still very vocal about it so I doubt that my MP will listen to my concerns.

Lost good idea printing out some info for your GP. I'm not the best letter writer either so thought best to find a template of some kind.

Goodbye thats great, thank you for getting that done it's a big ask to speak up about something when it appears everyone is against your view. There's a saying somewhere about a tiny mosquito can disturb your peace in a quiet room, I guess we might be mosquito

Feel free to take what's useful from the thread or the links. Maybe clean up my language though

By the looks of the news no deal looking increasingly likely but so might a General Election or referendum...

@Hazardswan I'd definitely be interested in that list of drugs for ME. I have it and take 1! Mine isn't severe thankfully but I'd love to know what else is given to some with ME.

@funsponges sorry to hear your living with ME but i'm glad your getting some treatment at least. PM'd it over to you with another link. Hope its useful or at least interesting!

1. I totally agree with you

2. There are 250 drugs for ME? I’ve never been given any, despite 11 years of diagnosis. Any idea what they are?!

I’m on a highly concentrated, never routinely stocked version of a controlled drug and I can only get a month at a time. It’s made by a German company. Pretty sure I am fucked.

sink Will PM the links m'dear!

The NHS treatment for ME leaves a lot to be desired I'm so sorry.

We'll get this brexit shit canceled or better planned and then we'll kick butt trying to make it better. Promise!

Hazard I'd like that list too please. I had bad ME and get literally fuck all help from the nhs. I take ibuprofen which takes the edge off sometimes but that's it. Thank you.

Had =have

Done - hope it helps or at least informs. Overwelming amount of info about ME out there but it shows there's lots of options.

If your to poorly to kick up fuss with MP feel free to share thread with any family or friends who can do it for you.

Thank you very much for the info Haz

May I ask what people mean by ordering their medication in early? My GP and chemist only allow me my next prescription no earlier than 10 days before it is due?

hmm... I just remembered the cat takes medication. I'll have to make sure to have a good supply in of that, won't I!?

Don't forget about your pet meds too, anyway.

Ps I have had ME for twenty years, severely last 13 years. I have been totally bedridden apart from transferring onto my chemical toilet at the end of my bed (I have carers in daily) for the last five years. There are no licensed medications for ME (we desperately need more biomedical research to develop effective medical treatments) just meds to help with sleep and pain.

@Hazardswan, would you be able to pm with the link you have referred to as I am intrigued what is on it. Many thanks.