MNHQ here: your thoughts around Brexit and medicines - and what Leave voters think now

[RowanMumsnet]

Hello

We've had a request from Heather Saul, the woman's editor at "the i" newspaper, who'd like to find out more about what Mumsnet users think about how (or indeed whether) Brexit is affecting their approach towards prescription and over-the-counter medicines.

We know from a recent survey of Mumsnet users that 11% of respondents said they were stockpiling over-the-counter medicines, and 8% said they were stocking up on prescription drugs. We've also seen from quite a few threads that for those who have chronic or serious conditions - or who are caring for people who do - the availability of medicines and things such as prescription formula seem to be causing some anxiety.

Heather Saul covered the grocery-stockpiling aspects of our survey in the i at the time and she's now interested in finding out more about which conditions and medicines are causing MNers the most concern as B-Day, and a possible No Deal, approaches.

So if there's anything you'd like to share about your thoughts, specifically on medicines and health, please add your posts here. Of course if you're not at all worried and think the risk has been overstated, you're very welcome to say so!

If anyone would like to share something with Heather off-site, you can email her directly on [email protected] [contact details edited by MNHQ 26/02/19]. She's also on the look-out for people who might be willing to be interviewed on this topic, so if that's something you're happy to consider please email her and she can let you have more details.

And she's also keen to talk to Leave voters about what they think about Brexit now - so again, if you've got something you'd like to share, please let us know here or email Heather directly.

Thanks
MNHQ

My son has type 1 diabetes and I am worried about the effect of a no deal Brexit. His insulin comes from Denmark and his insulin pump supplies come via the Netherlands. He will be dead within 2 days without any insulin.

The amount we get each month on prescription is carefully controlled so there is no way to create a buffer. My son is 13 yrs old and not stupid - he reads the news and knows what is going on and can work out for himself the implications of a no deal Brexit. This to me is the most criminal thing this government is doing. To threaten a no deal Brexit, in the knowledge that she can unilaterally revoke Article 50, is unforgivable of Theresa May. She is causing untold worry and fear. My son is crying at night, thinking I don't hear him, worrying that he will die. Theresa May is in effect a terrorist. She is holding people up and down the UK, who rely on medication to stay alive, to ransom, hoping to scare MPs into voting for her deal. It is outrageous for a Prime Minister to be doing this to the very citizens it is her first duty to protect.

Today 2 diabetes charities, JDRF and Diabetes UK, have released statements calling on the government to provide more detail on access to insulin in the event of a no deal Brexit:

"In a joint statement issued today, UK Chief Executive of JDRF Karen Addington and Chris Askew, Chief Executive of Diabetes UK, explain how without more detail, they are unable to say a no-deal Brexit would be safe for people reliant on insulin."

jdrf.org.uk/news/jdrf-and-diabetes-uk-call-on-the-government-to-provide-more-detail-on-access-to-insulin-in-the-event-of-a-no-deal-brexit/

When your child is given a diagnosis of a life threatening disease it is terrifying. My son was diagnosed at 11 months old. But you learn to live with it, and tuck that fear away deep inside you. My son is now 13yrs old and lives a normal life for the most part. Yes, type 1 diabetes involves a lot of work to keep him healthy, and we are always worried about possible long-term complications, and the threat is always there (children can and do die of type 1 diabetes sadly).

Since the referendum, and even more so now we are being threatened with a no deal Brexit, I have had to confront the fear that there is a very real chance my son could die. This is not hyperbole. This is the facts of a no deal Brexit.

It is not some abstract idea to be argued over in Parliament or down the pub. There are real consequences and I am quite frankly sick of people who have no idea telling me it will be ok, I am over-reacting, or that I somehow need to respect the fact that "leave means leave". Not when it bloody well means people will die I don't!

I would also like to add, this is affecting our every day life. I am finding it very hard to focus on anything other than Brexit (having your child's life threatened will do that!).

I cannot plan for the future, e.g. holidays, I am finding it hard to enjoy every day life. My son is anxious. I'm sure all this stress must be affecting my other children.

I am so angry about it all. There is absolutely no need for any of this. It is within Theresa May's power to rule out no deal. She can unilaterally revoke article 50. She should be threatening the ERG with no Brexit, not citizens with a no deal Brexit and no medication! It is utterly irresponsible and heinous. This is why I say that Theresa May is a terrorist. That is exactly what her actions suggest she is.

I too am T1 diabetic on a pump, very worried. I've still got some insulin pens incase I can't get my pump supplies.
The prospect of death is very real

Other t1s - how real is real?! I mean should I be making sure my will is up to date here and making arrangements for my kids?!
I have some insulin stocked up but it’s for my pump. If I have no pump supplies I will have to use my pens and I don’t have many cartridges as they are usually just a back up in case of pump failure. I will have to get some syringes to use with my vials that usually fill my pump reservoirs. Just like the ‘good’ old days

Dbil has had meds for a chronic condition substituted. Not exchanged for a generic, substituted because they cant get them.

DH is on a certain drug prescribed by a neurologist. It cant be changed for a generic without risk. It definitely cant be substituted for another. If his drug is changed he automatically loses his driving license. Last time he was I'll and lost his driving licence he lost his job.

Long term medical implications too.

pharmaphorum.com/news/chinese-patients-new-drugs-before-uk-brexit-ceo/

@TheresaMayIsATerrorist - I've had to have "that" conversation with my son too as he sees the headlines. I've been hiding from him the existing problems with pump supplies but have had to come clean about that too. I really, really resent having to have that conversation with him.

The shocking thing is NONE of the politicians responsible for this utter farce will face any consequences whatsoever.

Blair (and bush imo) should have been tried for war crimes and have never even been questioned.

I have no doubt whatsoever that the pm, other MPs (of all persuasions) and their families are all "covered" for any eventualities including having access to necessary medications.

They're playing chicken with poor people's lives is the reality.

And with everything else going on in the uk at the moment I say

SHAME on leave voters (especially the "I'm alright jacks like the pp who said 'well my child and I aren't affected and I refuse to accept there's going to be any problems')

And SHAME on those who vote Tory.

I'll get flamed I don't care! I'm sick of people not giving a shit about anyone but themselves and taking NO responsibility for their actions.

The closer we get to mar 29th with NO PLAN in place to ensure basics like safe food, medicines, water & energy the more I notice leavers abandoning or denying their initial claims "it'll all be fine". Let alone "it'll be better"!

They need to admit they were either CLUELESS or SELF SERVING or both in voting leave.

Hi Im a carer and I've already been in contact. I'll just add that the long term implications of EMA moving (as linked above) hasn't been widely covered by the media (or even thought of by politicans?) as to the long term impacts on patients.

And if the withdrawal agreement is somehow passed what then? We're okay med wise as much as I understand it while that is in place but it's not permanent. So we will all be on tender hooks until concrete deals are in place.

It's as if no thought or care has been given to people at all. I didn't see health care debates much during the referendum and if this scenario had been discussed it would have been dismissed as fear mongering and far fetched....yet here we are weeks to go until we leave, no deal or transition in place.

What are politicans saying indirectly to us? That they don't give a shit about our lives. How is this legal? What other modern, rich country in the world behaves so recklessly?

I read today that some meds will be rationed in a no deal scenario but what meds? Why are we being kept in the dark like this? The lack of information is beyond frustrating. Will people with money skip the rationing with a private prescription? I have read nothing about private prescriptions being given priority. I don't begrudge anyone paying privately if that's what they need to do to get the meds they need to stay alive but we should know about it. And be angry about it. You shouldn't have to be rich to deserve treatment. It's an information black out.

There's nothing as indivduals we can do to prepare at this point. It's to late to personally stockpile (or buffer as the doctors who are over prescribing are calling it) on a large scale and disruption is likely for 6 months.

Also wtf happens after 6 months to make it all magically okay? I'm highly sceptical because yet again i have not seen any concrete reasonable plans.

Totally agree about the 6 months crisis period being apparently plucked put of thin air.
These people should be prosecuted for dereliction of duty, and in some cases corruption / profiteering.

Good question from pp about private prescriptions.

How will the PM be getting her insulin?

Wierd thread - I'd almost think GF but MNHQ posted it.

Yes, totally agree. They do seem to allow just any old sentiments to stay, like the above line I have just copied and pasted. And on a thread where people have real concerns.

One would hope people who voted leave would go to the back of the queue if there are shortages. Unfortunately, I think it is now obvious they don't seem to have the words integrity or honour in their lexicon. Just the sneering of the line I copied.

My dh works in the pharma industry.
Those saying that there will be no disruption are kidding themselves. No deal would cause major transport problems for a start.
There are conferences/meetings planned to try and work out what to do.
Leave voters should be utterly ashamed of themselves.

Is he seeing any current issues due to Brexit MrsKeats?

Asthma and thyroxine meds in this house I’ve got a couple of extra inhalers but only get thyroxine on a 28 day prescription so can’t stock up
Tbh I find it incredible that anyone trusts this government to deliver meds/food or anything else in a seamless manner
They have form for much incompetence

Yes. Lots of concern about supply chain. If Kent becomes the car park it’s predicted to in the event of no deal there are bound to be delays. There is also the issue of if Britain withdraws from the EU’s medicines regulators. Lots of info in the BMJ

Here is the information for stakeholders on the website of the European Medicines Agency. This will now be relocated from London to Amsterdam because of the UK is leaving the EU. Remember David Davis said it would be a matter for negotiation. That is like saying the UK gov't will negotiate with the US or India to place the FDA or India's regulatory authority in the UK. Maybe Putin could negotiate with the UK to house the Commons in Moscow instead of London. That is the sort of bonkers statement it was! They seem to be passing their fantasies as fact. This is of course misrepresenting the reality. I think that may be classed as lying if they are deemed to be of sound mind.

www.ema.europa.eu/documents/other/questions-answers-related-united-kingdoms-withdrawal-european-union-regard-medicinal-products-human_en.pdf

The MHRA have one too. They previously had a possibly politically commanded blurb stating something like 'Making a success of Brexit'. If there is a disorderly Brexit, the UK are straightaway a 3rd country.

www.gov.uk/government/collections/mhra-guidance-and-publications-on-a-possible-no-deal-scenario

It's a real worry.

I've just clicked on the JDRF and Diabetes UK link above - there is an update at the bottom of the page:

UPDATE: Since publishing the story, we have had conversations at the highest levels within both the Department of Health and Social Care, and NHS England. As a result of these conversations, we’ve had commitment both from the Department, and from NHS England, that both Diabetes UK and JDRF will be given the opportunity to view detailed plans in relation to continued supply of both insulin and other diabetes-related medical supplies

We’re encouraged by these new early developments and, as soon as these important meetings have taken place, we’ll update you all

All leave voters I know bitterly regret voting that way. They were taken in by the many lies of the leave campaigners - the £350m to the NHS was the lie that most of them believed.

I hope A50 can be revoked, as all alternatives are horrific.

@BambooBoobam

I you (not you personally) voted Leave because you believed some of the lies politicians told you there's nothing you can do about it, is there? You can't withdraw or change your vote in any way? I wonder if anybody has ever gone to see a lawyer to try to sue any politician or withdraw their vote because they were mis sold? I suppose you have no way of proving how you voted in the first place. If Brexit was a consumer product I bet you could take it back and get a refund because it doesn't do what it said it would.

Every time I visit the paediatrician/hospital or chemist I am getting grilled on why my daughter needs her asthma inhalers (preventer and reliever), how often she needs her reliever, does she need her reliever now she has her preventer...is this stock related or just general practice?

I take prescription medicine and am confident there will be no interruption. I think people are just panicking unnecessarily

Really? Do you work in medicines supply Coppersulphate?

Just a bump because I was wondering when the article was coming out...

Royal College of Radiologists: Some cancer treatment may be delayed if there is a No-Deal

Whatever happens, May must avoid No Deal
The wealthy - who usually have worldwide private health insurance - will move abroad for treatment. Most other people can't

https://www.hsj.co.uk/policy-and-regulation/some-cancer-treatment-may-be-delayed-post-brexit/7024457.article

NHS trusts will have “no choice but to prioritise” which patients receive cancer treatment if a no-deal Brexit delays the import of radioactive isotopes, the Royal College of Radiologists has warned.

With just 28 working days to go before the UK may leave the EU without a deal, the RCR told HSJ it has not yet seen “any finite logistical detail” of the increased air freight capacity needed to guarantee delivery of short-life isotopes.

The college said it has also not seen the “detail of the customs paperwork” that would allow the materials, which cannot be stockpiled as they decay too quickly, to gain fast-track entry into the UK.