The system is broken, but change is coming

I’m feeling a bit broken today too. A day of listening and watching stuff about skin all day has been exhausting. This Morning shared advice that topical steroids very effective” they are & that they are not responsible for “causing any addictions.” That makes me sad. I listened to a podcast that really upset me. Parliamentary live was disappointing to hear nothing much has improved since the last parliamentary review in 2003 and 2013, however TSW was mentioned in great detail. So this is just a rambling rant about skin and awareness and how annoying it is to hear people gaslight TSW. It is real! It is happening. And it is a cruel and terrible thing to experience in the face of so much disbelief and ignorance.

I listened to a podcast that triggered and upset me

Thanks my good friend Olivia who inspires quite a few of my blogs. She told me about this podcast.

Primary Care Knowledge Boost pod cast – on Apple podcasts

Speciality Doctor Rachel Hilton joins us on the podcast to talk about eczema. You’ll hear from the episode that she is passionate about getting the basics right as a way of providing vastly better care to our patients. In the episode we cover: what eczema is, types of eczema and some important differentials, before focusing on the management of atopic eczema. This includes navigating emollients, steroids and calcineurin inhibitors with advice on how to use these effectively.

Rachel has some quite shocking things to say…

The good

• Avoiding detergent on skin for washing – using an emollient instead so apply emollient and then wash off
• The bathe study – Southampton – pour in bath emollients do not work!
• Use a teaspoon to get emollient out of the tub – not fingers

The Bad

And these are her opinions not my own…

• Underuse of topical steroids is almost universal – There is an awful lot of uncertainty and anxiety – pharmacy have to put label on saying apply thinly or sparingly but tell my patients to ignore that! (Ed: What the actual F**K Rachel!)
• Here’s her analogy for Topical steroid potency.
  • Hydrocortisone – shandy
  • moderate – wine.
  • potent like spirits.
  • super potent like meths
• Steroids should be applied thicker on thicker areas of skin – to permeate to the lower levels of the skin. Adult – moderate on face or genital. I never prescribe mild to adult. potent of super potent for limbs or trunk of adult. Mild or moderate for any area on children. Sometimes potent on children. Never super potent in genitals or face. Elderly – straight to super potent as not worried about long term use! As long as you choose right potency I don’t advise stepping down – continue to use same potency. only use on days when you have eczema, don’t use when you don’t Don’t taper… (Ed. Spoken like someone who has never used them… so worrying – we have such a long way to go)
• Never limit days a patient can use the topical steroids for… only treat on days when it’s there.
• Apply emollient first then apply steroids
• Advise the patient to ignore the label saying apply thinly or sparingly. Instead should apply more, enough to cover or colour in the red area.
• Protopic – tacrolimus – I prescribe these out of licence, under age of 16 years to children – never prescribe the lower potency.
  • Reducing use of topical steroids on the face to reduce risk of glaucoma
  • means reducing use of topical steroids on the face
  • Tell patients to ignore the flushing warming feeling –
  • Apply once a day at night and leave on over night
  • Advise patients to topical steroid on face in morning and protopic at night! (Ed: Holy Moly… seriously?)

I don’t want to run down any dermatologists, she had a lot of good things to say and it sounds like she has some success. Advice has obviously changed too because I was always told to continue using topical steroids even after it had cleared up for two weeks at least, whereas Rachel advises only using when skin is red.

But some of what she said is so worrying… Ignoring the advice and warning labels, prescribing potent steroids over weaker ones… advising people to use TS and Protopic on their face at the same time! I really fear for the TSW looming in some of her patients.

Skin on Fire Documentary is out…

The much awaited Skin on Fire documentary came out today, Tuesday, January 25 on YouTube at 8pm. Showcasing TSW and the very real struggles, suffering and pain it causes. I hope this will really help raise awareness. You can watch the trailer here:

The whole video will be out soon and I’ll share it when it’s live.

Good to hear TSW mentioned in Parliament today

I wept listening to Rachel Maskell raising the problems faced by my friend Hannah who is going through Topical Steroid Withdrawal. And encouraging to hear that there was a Skin and Mental Health Debate on parliament live website that I could actually listen to. Thanks again to Olivia for the link. The following was raised to a very empty room of like minded people, but it’s a start to hear this debate going on:

• Year long wait to see a Dermatologist at the moment
• Lack of any psychological support for those with serious skin conditions
• Mental health, thoughts of self harm, mental deterioration, due to skin conditions
• Eczema is rising – 1.3 million people
• Psoriasis affects 1-1.2 million people
• Need support and better link between Dermatology and mental health
• 55% of children are bullied about their appearance
• Rachael Maskell MP mentioned TSW in detail, sharing the huge pain and suffering of those who are unlucky enough to find themselves addicted to topical steroids. So proud of my lovely friend Hannah who spoke to her MP about this and who got this to happen. Rachael also mentioned ITSAN and Scratch That.

Thank you to everyone who spoke. They also mentioned the wonderful Changing Faces charity that supports anyone with a facial difference, scarring or disfigurement.

Shame on you This Morning – gaslit again

‘This morning’, the popular ITV morning show with Phil and Holly, had a tiny segment about eczema and now I’m fuming.

Having spent three years going through topical steroid withdrawal without yet finding a medical professional who will accept, acknowledge and discuss my condition with me, I cannot believe what I saw on ITV this morning

Because before you defend your nice little segment on how good topical steroids are, TSW has been recognised quietly by the MRHA and the main eczema charities. I say quietly because they don’t know how to handle it, it’s been brushed under the carpet. But it is real and it’s horrendous.

So to hear how “very effective” they are and that ‘they are not responsible for “causing any addictions.” And Mentioning problems occur when they are applied on areas that it’s not necessary” – beggars belief.

Our doctors are telling us how to use them and we are using them accordingly.

Advice from doctor to doctor varies.

We are given repeat prescriptions over and over again. That is not our fault. Who polices that system? You cannot blame a patient who is still using a medication.

The guidelines have been reviewed and changed to use for 2 weeks only.

Yet the advice doctors continue to give out is that they are safe and to keep using them.

I believe TSA and TSW is a far bigger problem than currently realised. Because we are told again and again to go away and use more, that we are not using them properly. I was told last year by a nurse to apply them in a slick layer. Ridiculous.

These creams are destroying our skin and leaving us with a whole body condition that is worse than you could imagine.

We should not have skin from a nightmare if we decide to discontinue using some medication. The skin condition we began with has become the worst you could possibly imagine. That shouldn’t happen. It’s not right.

Can someone please do some research so you give a balanced and correct viewpoint in future?

I want to say to ITV This Morning, Phil and Holly, If you would like to address this issue on a future show I would love to come on and discuss it with you. Google TSW and you’ll see how huge this is. Go on Facebook and Instagram to find the community out there just desperate to be seen, heard, acknowledged…

We are the gaslit.

The ignored.

The belittled.

We are angry!

And we are marching to raise awareness of Topical Steroid Withdrawal in London on 26th March. Contact TopicalDebate for more info if you’d like to join us.

Sorry for this rant. It feels disjointed but that’s how my day has been. Change is coming. People do care. But it’s going to be a while before we see any real change.