The current advice is that critically ill patients with a lysosomal storage disease (LSD) should not be transferred to the specialist centres and should continue to receive treatment at their local hospital as appropriate.
Advice and support should be sought by your specialist centre as required.
There is a lot you cannot control right now but what you can prepare for is having your emergency information to hand should the worse happen. Here is a checklist of what you can get ready in case you or a family member is affected by coronavirus or needs to go to hospital for any other reason.
Keep to hand
A list of all the important contacts, who they are and their telephone numbers. This should include the contact details of your specialist centre.
Your emergency patient card.
Any emergency guidance or care plans you have to share with the medical staff.
A list of all medications, what they are for and when they are to be taken. Don’t forget to send all the patient's usual medication/dietary supplements to the hospital.
You may want to have a hospital bag ready with everything the patient would need in hospital (e.g. clothes, personal care items, things to keep them occupied).
Other things to think about and discuss
Speak with your closest family members and advocates to ensure they know where important information is kept.
It is important to prepare yourselves as it may not be possible for family members, partners or carers to go to hospital with the patient. Make sure you have a contact number for the hospital, ward, and that medical information goes with the patient (keep a copy for yourself just in case).
Don’t forget to make sure you have enough supplies of any medications, dietary supplements and personal care products to see you through this difficult period.
Download an editable emergency care plan template.