Bought weight loss jabs or any other medicine online from anywhere other than a registered pharmacy? This episode is for you.

Andy Morling is Deputy Director for Criminal Enforcement and Head of the Criminal Enforcement Unit at the MHRA. His team goes after the people selling fake and illegal medicines in the UK, and last year, working with Border Force, they took 28 million doses out of circulation.

We talk about how the unit traces criminals through their bank accounts using reverse burden of proof, the AI tool built with eBay to catch illegal listings, and the counterfeit Ozempic pens that were found to contain insulin. Andy is also clear that if you bought something you now think is fake, you are treated as a victim, not a suspect.

Timestamps

0:00 Introduction

1:29 Welcome, Andy Morling

2:36 Why the MHRA has its own Criminal Enforcement Unit

5:14 How investigations start: Yellow Card reports and Border Force

9:22 Can you spot a counterfeit medicine?

12:29 Will you get in trouble for reporting fake medicines?

14:12 The AI tool built with eBay to catch illegal listings

18:27 Why was last year a record year?

20:49 Weight loss jabs (GLP-1s) and the fake Ozempic pens

23:46 Erectile dysfunction medicines

24:38 Controlled drugs: the bulk of the 28 million doses

25:30 Who is buying these drugs, and why?

27:36 Why your credit card details are at risk

28:33 What happens to the criminals?

29:37 Taking their money: reverse burden of proof

31:11 Wrap-up

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When Liz Curtis's daughter Lily was seven weeks old, something was not right.

She struggled to gain weight and had seizures where she stopped breathing. Liz and her husband were told Lily had a mitochondrial disease, that there was no cure and no treatment, and that she was unlikely to survive. Lily lived for another six months at home with her family.

Liz went looking for information and other families, and found almost nothing written for parents.

In October 2007, six months after Lily died, she set up the Lily Foundation. Nearly 19 years later, the charity has raised millions of pounds for research and supported more than 1,500 families, and it has helped drive advances in genetic diagnosis.

In this conversation, Liz talks about what it is like to live with a child with a life-limiting condition, how mitochondrial disease is passed on, the difficult question of whether to test, the community she has built, and the charity's plans for a UK Mitochondrial Disease Research Institute.

Chapters

00:00 Introduction

02:36 Lily's illness and diagnosis

05:01 Taking Lily home

06:46 Setting up the charity

09:28 Funding genetic testing, and how the NHS took it on

10:35 The London Marathon and the first families

13:15 Living with the waiting

14:40 Making sure everyone met Lily

16:20 What is mitochondrial disease?

18:01 How it is inherited

21:51 Should you test?

25:17 The community: online groups, weekends and coffee mornings

27:51 Why the charity paused its research call

29:28 The Mitochondrial Disease Research Institute

34:36 Building the foundations

35:39 How to get involved

36:53 The Lily Family

About Liz Curtis

Liz Curtis MBE, is the founder and CEO of the Lily Foundation, a UK charity dedicated to fighting mitochondrial disease. She founded it in 2007 after losing her daughter Lily, with the aim of funding research, improving understanding of the condition, and supporting affected families.

If you or your family have been affected by mitochondrial disease, you are not alone. Find out more about the Lily Foundation here:https://www.thelilyfoundation.org.uk/.

This episode includes a discussion of the loss of a child.

This episode is for general information and is not a substitute for medical advice. If you have concerns about your health or your child's health, please speak to your GP or specialist team.

For more conversations like this, sign up to the My Health Focus newsletter: https://bit.ly/3NA40IQ

My Health Focus is not a medical service. The information provided is for general informational purposes only and does not constitute medical advice, diagnosis, or treatment.

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Show Notes:

Marianne Nicholson, MBE, Director of the Shingles Support Society, joins Catriona to discuss shingles, the reactivation of chickenpox virus, and the lasting nerve pain it can cause.

Key takeaways:

1. Shingles is a reactivation of the chickenpox virus, appearing in a small region on one side of the body, most commonly the ribs or face. Early nerve sensations are often mistaken for a pulled muscle or insect bite.

2. The 72-hour window to start antiviral treatment is critical. The sooner treatment begins, the less severe the outbreak and the lower the risk of lasting pain.

3. The NHS shingles vaccine (Shingrix, two doses) is available to people who turned 65 after 1st September 2023 and anyone in their 70s. After 80, it is no longer available on the NHS. People over 50 can pay privately.

4. Post-herpetic neuralgia is ongoing nerve pain after shingles has healed, sometimes lasting for life. Research has measured the pain as worse than childbirth in some cases.

5. Because shingles pain is 'ghost pain' created by disturbed nerves rather than actual tissue damage, psychological techniques like hypnotherapy and physical strategies like firm pressure bandages can help manage it safely.

Marianne Nicholson, MBE, has been Director of the Shingles Support Society for almost 30 years, helping people understand shingles, its prevention, and its aftermath.

For more information, visit shinglesupport.org.uk. If this episode could help someone you know, please share it.

Subscribe to My Health Focus so you don't miss what's next.Sign up to our newsletter here:

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1. [02:15] Marianne explains that chickenpox sets up home in a corner of your body and can reactivate as shingles when your immune system is less efficient or has lowered its guard over time.

2. [04:30] Marianne describes the early nerve sensations of shingles: 'people think that they pull the muscle or they've been bitten by an insect or they've got perhaps an allergy to a plant in the garden because of that nettle sting feeling.'

3. [05:10] Marianne states that doctors are told that after 72 hours it's probably not worth giving the antiviral drugs, emphasising 'the sooner the better for shingles.'

4. [10:45] Marianne explains that people who have nursed series of children through chickenpox are less likely to have shingles than those who last met chickenpox virus at age 10.

5. [13:20] Marianne clarifies the NHS vaccine eligibility: people who turned 65 after 1st September 2023, anyone in their 70s, but not after 80. She also explains that people over 50 can buy it privately.

6. [15:50] Marianne describes her own decision to pay privately for Shingrix after receiving Zostavax years earlier, because Zostavax is not expected to last more than about 10 years.

7. [19:45] Marianne references research showing shingles pain measured as worse than childbirth, then adds: 'imagine being in the throes of childbirth every day for the rest of your life with never a baby to show for it.'

8. [21:30] Marianne describes her own shingles pain as 'somebody had got one of those wire brushes that you use to brush rust off cars and was sort of pushing it into my back,' and that 10 years later she still has 10% of that pain.

9. [24:10] Marianne explains that shingles pain is 'ghost pain' because 'there is nothing wrong with the area that hurts,' unlike a broken leg or burnt skin, so psychological ways of ignoring it are perfectly safe.

10. [27:00] Marianne shares the corset T-shirt tip: a man bought a heavily elasticated T-shirt, had a seamstress add hooks and eyes down the front, and the firm pressure stopped the feeling of clothing scraping his skin like sandpaper or barbed wire.

My Health Focus is not a medical service. The information provided is for general informational purposes only and does not constitute medical advice, diagnosis, or treatment.

JOIN THE MY HEALTH FOCUS COMMUNITY AND SIGN UP TO OUR NEWSLETTER

Hosted on Acast. See acast.com/privacy for more information.