Going to Hospital
We understand that a hospital visit, whether anticipated or sudden, can bring feelings of worry and uncertainty. If you’re living with FOP or POH, it’s very likely you’ll have more appointments than most, including a number of outpatient visits.
We know that navigating the healthcare system can feel overwhelming at times, and that’s why we’ve carefully gathered this collection of helpful resources for you.
Here, you’ll discover information and guidance designed to help you prepare for your hospital visit, understand what to expect during your stay, and know what steps to take after you’re discharged. Our aim is to make your hospital experience as smooth and comfortable as possible, offering clear, accessible, and practical support every step of the way.
This page does not contain emergency medical information. Please visit: EMERGENCY
We are delighted to have partnered with Cambridge Rare Disease Network to create Rare Patient Passports for our families living with FOP and POH.
The passport, developed by CamRARE (Cambridge Rare Disease Network), is am initiative designed to enhance communication for individuals living with rare conditions within healthcare settings. It allows patients to share crucial medical and care information effectively with healthcare professionals, especially during urgent situations.
To learn more and download a print a passport, visit: RARE Patient Passport
Cambridge University have developed leaflet called “Coming to hospital: a guide to what goes on” in partnership with Usborne Publishing. It is aimed at helping young patients understand what to expect about admission to hospital and to help them feel calmer about it.
The accompanying book, ‘Look Inside a Hospital‘, can be purchased from all good booksellers.
Usborne have also created a page of Quicklinks to accompany the book. Please note: The Quicklinks take you to content on external websites, so it is advised parents check the suitability of the content before sharing with their child. Visit: Quicklinks
Download the leaflet here: Coming to Hospital
The Health and Care Passport is a valuable document designed to provide healthcare and social care professionals with essential information about you. It serves as a quick and easy reference, enabling them to offer personalized and effective care and treatment.
You can present your Health and Care Passport to any healthcare professional, including your General Practitioner (GP), receptionist, nurse, dentist, or ambulance staff. This ensures that important details about your health and preferences are readily available to those providing your care, including what your preferred name is, what you like to eat and drink, what you like and dislike, and how the medical professionals can make things better for you. It is not a medical document.
For more information visit: Health and Care Passport
To download a Passport: My Care Passport
We have produced a handy checklist of things you may want to take with you, if you have a trip to hospital planned.
There is space to add on things which are special to you. If you think we have forgotten anything super-important, please get in touch and we’ll add it on to help other children and young people in the future.
Download: The Stay-Strong Bag Checklist
If our list isn’t quite right, we’ve got a blank one for you to make it your own!
Lots of space to make a list for any trip – to the hospital, grandma’s house, a road trip or…
Download: The ‘Mustn’t Forget’ List
Brave Parents is a charity dedicated to supporting the well-being of parents caring for children with complex medical needs.
They produce “Hospital Brave Boxes” specifically designed to support parent carers whose children with complex medical needs are admitted to the hospital for longer stays (exceeding five days). These boxes are filled with essential items and small treats, aiming to provide a moment of self-care and comfort during what can be an incredibly challenging time. Nominations for these boxes are open year-round and are sent directly to the hospital ward, provided the nominator confirms the hospital can accept post on the ward. The items are solely for the parent carer, focusing on their mental health and well-being.
For more information, visit: Brave Parents
The charity Sibs offers guidance for parents supporting siblings of children with disabilities or complex health needs, particularly during medical emergencies.
They have produces some guidance to help parents prepare siblings in case the child needs to go to hospital, either unexpectedly or as part of a planned visit. They offer advices on how to address the siblings’ worries and ensure they receive the attention and support they may need from family, friends, and schools during these challenging times.
You can find more information here: If your sibling child experiences medical emergencies
Ronald McDonald House Charities provides invaluable support and accommodation for families with seriously ill children in hospitals across the UK.
They offer a comforting ‘home away from home,’ ensuring families can stay close to their hospitalized child, often far from their own residences. This vital charity, funded through donations and fundraising, creates a supportive environment, easing the burdens on families during challenging medical journeys.
For more information, please visit: Ronald McDonald House Charities website.
Spread a Smile is a wonderful charity dedicated to bringing joy and laughter to seriously ill children and their families in hospitals.
Through engaging activities like bedside visits from entertainers, special outings, and creative arts, they provide vital moments of happiness and distraction. Their compassionate work significantly enhances the emotional well-being of young patients, helping them to momentarily forget their challenges and simply be children.
For further information, please visit: Spread a Smile website.
Some hospitals offer free meals to parents who are staying in for a longer time.
Find out more about the schemes and which hospitals offer this service here: Meals for Parents
