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The MCAS Hospital Prep Guide
Everything I did to prepare for a hospital admission with MCAS, severe fragrance sensitivities, allergies and other chronic illnesses
Having MCAS can make any hospital admission a lot more complicated. There are SO many things that can potentially trigger a reaction, from fragrances and cleaning products to hospital linens, food, adhesives, gels and products used during procedures.
I recently spent two weeks in hospital for the birth of my first baby, and because of my MCAS, allergies and other chronic illnesses, I did a HUGE amount of preparation beforehand to try and make the environment as safe and manageable for me as possible.
A lot of my preparation was obviously specific to pregnancy and birth, but I realised afterwards that so much of what I did could be useful for anyone with MCAS, allergies or chemical sensitivities preparing for a hospital admission.
So I've collated everything I did, plus the things I learned from actually being in hospital for much longer than expected, into one place for you.
You absolutely don't need to do everything on this list. MCAS is incredibly individual and we can all have completely different triggers, allergies and levels of sensitivity. This is simply what I did for MY known triggers and circumstances, and hopefully it can act as a prompt for things you may want to consider when preparing for your own hospital stay.
I've also included a big master checklist further down that you can copy and paste into your Notes app and alter to suit you.
Speak to the hospital as early as you can
One of the biggest things that helped me was starting these conversations BEFORE I actually arrived at hospital.
Because my admission was for birth, I got in touch with the Birth Options team during my third trimester and shared my complex medical history, allergies and the specific adjustments I was likely to need.
This gave us time to work through what I might need rather than trying to explain everything for the first time whilst I was already in hospital and giving birth.
If you're preparing for another type of planned hospital admission, I'd find out who you can speak to beforehand about allergies and reasonable adjustments.
Some things you may want to discuss include:
• Your known allergies and MCAS triggers
• Fragrance and chemical sensitivities
• Medication allergies or previous reactions
• Contact allergies, including adhesives and antiseptics
• Food allergies and dietary requirements
• Products you know you can't tolerate
• Products you've previously used safely
• Whether a private room may be possible
• Any other conditions that affect your care, mobility, positioning or handling
For example, I also have hEDS, so my preparation wasn't only about MCAS. I needed staff to understand the additional considerations around my joints and positioning too.
If you have multiple conditions, I'd think about how they interact rather than preparing for each one completely separately.
Make your important information REALLY obvious
This was one of the things I found particularly helpful.
I didn't want to rely on every member of staff finding the right section of my medical notes, especially as staff changed constantly throughout such a long admission.
My hospital actually created a physical laminated resource pack for staff.
This included the detailed birth plan I had provided, alongside a guide to MCAS that the hospital created to help staff understand the condition and how it related to my care.
Everything was printed and laminated so it could stay with me and be easily referred to during staff handovers and shift changes.
The information my hospital prepared for staff as part of my MCAS resource pack:
I think this is SUCH a good idea for anyone with a condition that isn't necessarily going to be familiar to every member of staff looking after them.
If you're preparing for an admission, you could ask whether something similar can be created or kept with you.
Even if your hospital isn't able to create its own guide, you could ask whether a short summary you've prepared yourself can be kept somewhere obvious and easily accessible to staff.
The important thing for me was that this information wasn't ONLY buried somewhere within my medical records. There was something physical that staff could actually pick up and read.
I also put a sign on my hospital door
I created a sign for the outside of my room so that some of my most important requirements were visible BEFORE somebody entered.
The sign outside my hospital room. I kept it simple so staff could see the most important things at a glance, particularly avoiding perfume and fragranced products, checking before using products on me and gentle handling because of my hEDS.
For me, this was particularly important for fragrance.
There isn't much benefit in explaining that perfume can trigger you once somebody wearing a lot of it is already standing next to your bed!
I deliberately didn't try to fit my entire medical history onto the sign either.
The door sign was there for the things somebody needed to know immediately, while the more detailed information was available in the laminated resource pack.
If I were simplifying the system I used, I'd think of it like this:
DOOR SIGN: immediate precautions someone needs to know before entering or doing something.
ONE-PAGE GUIDE: the essential information staff need to understand your condition and requirements.
FULL RESOURCE PACK: your detailed care plan, individual requirements and any different scenarios you've prepared for.
It meant everything wasn't dependent on me repeatedly explaining my medical history to every new person who walked into the room.
Have a plan, but also plan for the plan changing
For my birth, I wrote a really detailed birth plan that included different decision trees and scenarios rather than only describing my ideal birth.
That turned out to be incredibly relevant because things did NOT exactly go to Plan A!
I think the same principle can apply to other planned hospital admissions.
Think about what would happen if:
• You need an unexpected procedure
• Your admission lasts several days longer than planned
• You're moved to another ward
• You're unable to advocate for yourself
• You need a medication or product you hadn't expected
• Your planned treatment or procedure changes
• The person supporting you has to leave
• Something becomes an emergency
You obviously can't prepare for every possible scenario, and trying to do that would probably drive you mad.
But thinking through the most realistic alternatives beforehand can mean you're not trying to make every decision from scratch when you're exhausted, unwell or in pain.
Find out what products they might need to use
This was a BIG part of my preparation.
I tried to find out what products might potentially be used during my admission and, because of my allergy history, patch tested appropriate products in advance where possible.
I also thought beyond what I expected to happen.
My admission was for birth, but there was always the possibility of interventions, surgery or other unexpected situations, so I wanted to know about potential products BEFORE I was suddenly in a situation where they needed to be used.
Depending on your admission, things you may want to ask about include:
• Antiseptics
• Adhesives and tapes
• Dressings
• Gels and lubricants
• Cannula/IV products
• Monitoring equipment
• Surgical preparation products
• Wound care products
• Toiletries and personal-care products
• Anything else that's likely to have prolonged contact with your skin
Obviously, not every medical product can or should be patch tested yourself.
Something being tolerated on your skin also doesn't guarantee that you won't react to it in another context, so please discuss testing, medications and medical alternatives with your own team where appropriate.
But simply finding out WHAT might be used gave me the opportunity to identify potential problems and discuss alternatives before I was actually in the situation.
Bring your own products where appropriate
For some things, rather than trying to find something suitable once I was already in hospital, I brought products I had already used and knew I tolerated.
For example, I brought my own aloe gel for use around cannulas because this was something I had already used.
Depending on your own triggers, this could also apply to things like toiletries, wipes, moisturisers or other everyday products.
Obviously hospitals have infection-control requirements and there will be situations where they need to use specific medical products, so you can't assume you'll be able to substitute everything with something you've brought from home.
But if there are products you know you react to, it's definitely worth discussing alternatives beforehand and asking whether you can bring something you already tolerate.
Think about EVERYTHING that touches your skin
It wasn't just medications and obvious medical products I had to think about.
Hospital linens and anything that had been washed using products I react to were another potential trigger for me.
So I brought my own:
• Sheets
• Pillowcases
• Towels
• Pillows
• Plenty of spare linens
And I mean PLENTY of spares!
I also pre-washed things that I knew would have prolonged contact with my skin, including my compression socks and gown.
For my birth admission, we were also able to pre-wash the CTG straps used for monitoring.
This is obviously something you'd need to arrange with your own hospital because there may be specific hygiene and infection-control requirements, but it's a good example of the less obvious things you may want to think about.
I'd basically look at your planned admission and ask yourself:
What is going to be touching my skin for hours at a time?
There may be things you wouldn't automatically think of as an "MCAS product" at all.
And seriously, bring spares.
If something gets dirty, wet, contaminated with fragrance or simply needs changing, having ONE safe version isn't necessarily enough.
Ask about equipment too
Another thing that's easy to overlook is equipment that's constantly moving between patients.
Where possible, some equipment was kept exclusively for me once it had been appropriately disinfected, including things like my blood pressure cuff and birthing ball.
If cleaning products or residues are a trigger for you, you could ask whether frequently used non-disposable equipment can remain with you rather than continually being moved between patients.
What is possible will obviously depend on the hospital, the equipment and infection-control requirements, but it's worth asking.
Ask about a private room
For me, fragrance wasn't only about the products being used directly on my body.
Other people's perfume, toiletries and fragranced products can also trigger me, which obviously becomes much harder to control on a shared ward.
Having my own room therefore made a HUGE difference.
A private room isn't going to make the environment completely fragrance-free because staff and equipment will still be coming in and out, but for me it removed a massive potential source of exposure from other patients and visitors.
If this is medically important for you, I'd raise it well before your admission rather than waiting until you arrive.
Of course, hospitals can't always guarantee that a private room will be available, but explaining WHY you need one gives them the opportunity to plan for it where possible.
Consider bringing an air purifier
I also brought my own air purifier into hospital.
For me, this was another layer of trying to make the environment as manageable as possible.
An air purifier obviously can't magically make a hospital room completely free from your triggers, but if you already use one and find it helpful, it's something you could ask about bringing.
I'd check with the hospital beforehand because they may have rules or electrical-safety requirements for equipment brought onto the ward.
Make a proper food plan
Food was another BIG consideration for me because I couldn't simply rely on hospital meals due to my allergies.
I needed my own food brought in for every meal.
If you're in a similar situation, don't just think about what you're going to eat on Day 1.
Find out:
• Whether someone can bring food in for you
• Whether you'll have access to a fridge
• Whether there's somewhere to heat your own food
• What safe snacks you can keep beside you
• What you'll drink
• Who can replenish everything if you're there longer than expected
This last one ended up being particularly important for me.
My hospital stay became MUCH longer than originally expected, so I needed a system that worked beyond the first bag of food I'd prepared.
Bring more medication than you think you'll need
For the same reason, I made sure I had plenty of my normal medication with me, including my rescue medications.
I wouldn't pack exactly enough medication for the number of days you're expecting to stay.
My own admission is a pretty good example of why!
If you're allowed to, bring enough to account for the possibility of a longer stay and make sure staff know exactly what you've brought and what you normally take.
It's also really useful to have a written medication list including:
• Medication name
• Dose
• Frequency
• Why you take it
• Any relevant medication allergies or previous reactions
• Your usual rescue plan, if you have one
Hospitals have their own policies around medication brought from home and self-administration, so check how yours handles this.
If you're having a baby
Obviously this section won't apply to everyone reading this, but this was another BIG part of my preparation.
I wanted to think about what would be touching my baby too because those products would inevitably also be constantly touching me.
I therefore brought my own pre-washed:
• Baby clothes
• Hats
• Towels
• Muslins
• Cot sheets
• Other baby linens
• Fragrance-free baby wipes
• Scent-free nappies
If you're preparing for birth with MCAS, I'd basically think about your baby's belongings in the same way you think about your own.
Wash everything beforehand using whatever laundry routine you already know you tolerate and ask your maternity unit what you're allowed to provide yourself.
Make sure the person with you REALLY knows the plan
If you're going to have a partner, family member, friend or carer with you, make sure they understand your requirements rather than only knowing that you "have MCAS".
They may end up being the person advocating for you at exactly the point when you're least able to do it yourself.
Ideally, they should know:
• Your most important triggers
• Your serious allergies
• Where your medications are
• Where your rescue medications are
• Which products you tolerate
• Which products you definitely DON'T tolerate
• What adjustments have already been agreed with the hospital
• Where your medical information/resource pack is
• Who to speak to if there's a problem
For something like birth, surgery or any admission where you may be heavily medicated, exhausted or very unwell, I think this becomes even more important.
I knew my own medical history inside out, but I didn't want the entire system to depend on ME being able to explain it at all times.
MASTER MCAS HOSPITAL PREP CHECKLIST
This is the part you can copy and paste straight into your Notes app and alter to suit your own triggers, conditions and admission.
You absolutely DON'T need everything here.
Delete anything that isn't relevant to you and add anything specific to your own MCAS, allergies or other conditions.
BEFORE YOUR ADMISSION
☐ Contact the relevant hospital team as early as possible
☐ Explain your MCAS, allergies and other relevant conditions
☐ Discuss fragrance and chemical sensitivities
☐ Make sure your allergies and triggers are clearly documented
☐ Provide your hospital with your own detailed care plan/birth plan if relevant
☐ Ask whether the hospital can prepare a short MCAS guide for staff
☐ Ask for important requirements to be included in staff handovers
☐ Consider a physical or laminated information pack that can remain with you
☐ Ask about an allergy/fragrance alert on your room door
☐ Ask about a private room if medically needed
☐ Ask whether you can bring an air purifier
☐ Find out which products may potentially be used during your admission
☐ Discuss alternatives for products you know you react to
☐ Appropriately test potential products beforehand where medically appropriate/advised
☐ Ask whether you can bring products you already know you tolerate
☐ Ask whether you can bring your own linens and towels
☐ Ask whether washable equipment/items can be prepared beforehand
☐ Ask whether frequently used equipment can remain exclusively with you
☐ Make a plan for food
☐ Make a plan for an unexpectedly longer admission
☐ Make sure your partner/advocate understands your requirements
INFORMATION TO BRING
☐ Short medical summary
☐ Full allergy and trigger list
☐ Medication list with doses
☐ Rescue/emergency plan if you have one
☐ Relevant consultant letters/information
☐ Admission plan or birth plan
☐ Alternative scenarios/decision tree if relevant
☐ Copies accessible to your partner/advocate
MEDICATIONS
☐ Regular medications
☐ Rescue medications
☐ More medication than required for the expected stay, where appropriate
☐ Medication in its original/appropriate packaging
☐ Any supplies you need to take your medication
☐ Written list of medication names, doses and frequency
PRODUCTS
☐ Your tolerated toiletries
☐ Soap/body wash
☐ Moisturiser
☐ Wipes
☐ Menstrual/postpartum products if needed
☐ Your own tolerated gel if agreed
☐ Any other products you already know you tolerate
LINENS + CLOTHING
☐ Own sheets
☐ Pillowcases
☐ Towels
☐ Own pillows
☐ Blankets if needed
☐ LOTS of spare linens
☐ Pre-washed clothes
☐ Pyjamas/gown
☐ Pre-washed compression garments if used
☐ Any washable medical items the hospital has agreed can be prepared beforehand
ENVIRONMENT + EQUIPMENT
☐ Fragrance/allergy sign for your door if needed
☐ Air purifier if permitted
☐ Ask about an exclusive blood pressure cuff if appropriate
☐ Ask about other frequently used equipment remaining with you
☐ Chargers/cables for equipment you're bringing
☐ Check the hospital's rules for electrical equipment brought from home
FOOD
☐ Safe meals
☐ Safe snacks
☐ Suitable drinks/electrolytes if appropriate for you
☐ Containers/cutlery if needed
☐ Check whether you'll have fridge access
☐ Check whether you'll have food-heating facilities
☐ Arrange somebody who can replenish your food if your stay is extended
IF YOU'RE HAVING A BABY
☐ Pre-washed baby clothes
☐ Hats
☐ Muslins
☐ Towels
☐ Cot sheets
☐ Blankets/other linens
☐ Fragrance-free wipes
☐ Scent-free nappies
☐ Ask about pre-washing CTG straps
☐ Ask what products may be used during labour and birth
☐ Ask what products might be needed if your birth plan changes
If that list feels completely overwhelming...
I know this is a LONG list.
And the last thing I want is for someone with chronic illness to come to this page looking for help and leave thinking I've just given them another 50 jobs to do!
You absolutely don't need to do everything I did.
My MCAS and allergy situation required a lot of preparation, and your triggers may be completely different from mine.
If I were stripping everything down to the things I think made the biggest difference, I'd focus on:
• Speaking to the hospital BEFORE you're admitted
• Making your most important allergies and triggers incredibly obvious
• Finding out about potential products in advance
• Bringing the things you already know you tolerate
• Having somebody else who understands your requirements and can advocate for you
• Preparing for the possibility that you'll be there much longer than expected
That last one is something I appreciate even more after actually going through it.
I went into hospital to have my baby and ended up spending two weeks there.
Suddenly having enough safe food, clean fragrance-free linens, medication and other supplies wasn't just me being ridiculously over-prepared. These were things I needed every single day.
Hopefully you won't need half of the contingency plans you make.
But if your admission DOES become longer or more complicated than expected, you've already done some of the thinking while you're at home rather than trying to solve everything from a hospital bed.
And that was really the purpose of all my preparation.
One final reminder...
This resource is based on my own personal experience of navigating a hospital admission with MCAS, allergies and multiple chronic illnesses.
MCAS is incredibly individual, so something that works perfectly for me could be completely unsuitable for somebody else.
Please use this as a starting point for your own preparation rather than a universal MCAS protocol. Discuss your individual allergies, previous reactions, medications and any changes to medical products or procedures with your own medical team.
Hospital infection-control and safety requirements also have to come first, so there may be things on this list that your hospital can't accommodate or needs to approach differently.
But most importantly, don't be afraid to start these conversations early.
The more that can be discussed, documented and agreed before you arrive, the less you're trying to explain when you're already exhausted, unwell or overwhelmed.
I hope putting everything I did in one place gives you a useful head start with your own preparation.
Katya
@positivelychronictravels 🤍
