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CamRare Family Resources

Tips from our community

Children with rare conditions require much more care and attention than most children. The focus of this page is to share some advice from the veteran members of our Unique Feet community. These parents have cared for their children for years and would like to share their experiences to help others.

Going into hospital

No one wants to go to the hospital, and in an emergency, it will be your job as a parent to explain what your child is normally like and what’s different to allow the doctors to treat your child. This will always be stressful, but there are a few things you can do to prepare.

 

  1. Fill out the hospital passport on our website. https://www.camraredisease.org/rare-patient-passport/
  2. Take your child’s normal medication with you to the Emergency department. Emergency department pharmacies are stocked with life-saving and common medication. It is very possible that your child’s normal medication won’t be available, and that is a stress that can be avoided by bringing it from home. When in the hospital, do not give your child their normal medication without discussing it with the doctors first.
  3. Ask for the Disability liaison nurse. All hospitals should have disability liaison nurses both for emergency and non-emergency admissions. These Nurses are specialists in autism and learning disabilities and will come and see you with the goal of improving the care of your child. Most doctors aren’t aware these nurses exist and will jump at the chance to have an extra pair of hands to help care for you in a busy emergency department.
  4. If you know in advance that you will need to come in for surgery and need certain equipment or provisions on the ward, speak to your consultant in advance and get the contact information of the ward so you can arrange this in advance.
  5. Children with autism may get overwhelmed with the new environment when coming to the hospital. For that reason, if you know your child will have to come to the hospital, it is a good idea to familiarise them by taking them in and even to the ward a few days and weeks before their procedure.
  6. Take home comforts, a small toy, a photograph, or something to make your child’s room a bit more like home.
  7. Take clothes for yourself. Most paediatric units and children’s hospitals have space for parents to sleep overnight so don’t forget your own overnight bag if needed.
  8. Here is a useful link for how to contact the Play Team at Cambridge University Hospitals – https://www.cuh.nhs.uk/our-services/childrens-services-paediatrics/childrens-services-a-z/play-team-paediatrics/

What to take to hospital

Our Unique Feet members have put together a list of essential items to take to the hospital that you probably haven’t considered. Most of these items are as much about looking after yourself as they are about looking after your child.

  • Your CamRare diseases Passport
  • Loose-fitting clothes for your child (easier to take on and off over lines and tubing)
  • Food for yourself
  • Pillow ( lots of parents have trouble sleeping on thin hospital pillows, and there usually isn’t a surplus.
  • Water bottle for yourself
  • Ipad/laptop with good headphones for when you need a break, or your child needs distracting
  • Download music and TV shows to devices. Hospital wifi isn’t great
  • Extension cable and charger for devices. sockets are located in annoying locations and having a long charger makes life easier
  • Toiletries

Try to have the same doctor every time

It’s possible that your child’s rare disease is unfamiliar to a new doctor. Over time as a parent, you will learn more about the disease from what you learn in the clinic and at home. You will become an expert on your child and a valuable member of the healthcare team. Doctors, especially GPs have a limited time with your child, and because these conditions are complicated, it takes a long time for doctors to learn everything. Therefore, it is incredibly important to try to get appointments with the same GP and see the same specialists each time. Many of our members still drive across the country to areas they used to live to see the same specialist team because they trust them and they know their child. GPs only have 10 minutes and its easier if they already know your child history.

Stop comparing your child to other children

It’s only natural to compare what your child can do to other children, but children with rare diseases will develop at different rates. One parent told us her child does everything on “Lucy time.” it may take longer, it may be in a different order or she may never get there,
but we are patient, and she will develop on “Lucy time”.

Keeping track of appointments

Rare diseases are complicated and often affect multiple organ systems. Despite much work, there are no rare disease clinics, and children in the Unique Feet tribe have been under up to 18 different specialists, especially when trying to get a diagnosis.

The advice from the Unique Feet community is to have a calendar for your child’s appointments, use it to mark when you are expecting a letter, when your appointment is, and when to follow up if you haven’t heard anything. The NHS is a big machine, and if you are under multiple consultants across hospitals, it is easy for things to be missed, and a calendar makes it much easier. Sometimes you may need to call consultants or departments if appointments are late. Most people are happy to help when you have your child’s best interests in mind.

Looking after yourself

Caring for a child with a rare disease can be very isolating. Carers UK reports that 29% of carers feel lonely often or always, and other studies show that 46% of parents of children with an intellectual disability could be diagnosed with depression or anxiety. Despite mental health conditions being common, healthcare staff often forget to check in on parents and offer support for what can be the hardest thing you’ll ever do. If you are struggling, you can talk to your GP, mental health charities or self-refer for talking therapy using the links below.

 

https://www.cpft.nhs.uk/talkingtherapies
https://www.samaritans.org
https://www.thecalmzone.net

 

The advice from families that have gone through this:

“I wish I had asked for help sooner.”
“Counselling helped me compartmentalise and cope with the stress of not knowing a diagnosis.”
“I always did the polite thing of saying I’m fine, but in one clinic, I broke down, and the doctors and nurses helped me access support.”
“Find someone you can say anything to, friends, family or other parents in the Unique Feet group.”
“ I blamed myself and questioned my parenting, but I’m doing the best I can, and I am a good mum.”
“Don’t compare to other children or other parents.”