CamRare Family Resources

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.

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.”

1. Fill out the hospital passport on our website. This passport is a document that tells the staff what is normal for your child and helps them to care for them when you aren’t around. https://www.camraredisease.org/rare-patient-passport/
2. Take your child’s normal medication with you to ED. 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.