Children’s Long Term Ventilation Pathways

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Parent and Families FAQs

Will I get any help once my child’s home?

Yes, the continuing care team will usually offer a package of care to assist you in looking after your child’s health needs once they are at home. A nurse from the continuing care team will usually visit you and your child in hospital to carry out an assessment of your child’s health needs. Based on this assessment you will be offered care in hours. The continuing care team will work with you to agree the best way in which to deliver these hours of care.

How will I carry all of my child’s equipment? Does this mean we won’t ever be able to go out?

There is some essential equipment that will need to remain with your child at all times but it is certainly very possible to go out with your child. Portable ventilators are small enough to fit in the bottom of certain buggies and are also able to run on battery power.  You will be advised about what make of buggy to choose that is appropriate for your child’s needs and their necessary equipment.  In some situations some NHS wheelchair services can help to supply buggies, the professionals involved in the discharge planning for your child will carry out a referral to this service for you. Before going home the professionals in the hospital will usually help you to practice preparing and loading equipment onto the buggy for trips out.

I am finding it really difficult to pay all of my bills. Is there any help available?

There is financial support available, what you are entitled to will depend on your individual circumstances. The Hospital to Home Welfare Advisers will be able to advise you what is available to you and support any necessary applications to seek support.

How can I meet other families with children requiring Long Term Ventilation?

The Children’s Long Term Ventilation Service has worked with hundreds of families so will be able to put you in touch with other families who have children with similar medical conditions to your own. Please do not hesitate to ask your Children’s Long Term Ventilation Service Keyworker about this if you feel this would be of benefit to you.

What do I do if I run out of ventilator circuits?

When at home, in most cases equipment is supplied by the Children’s Continuing Care Team.  It is advised that you keep a close eye on the levels of stock that you have and contact this team to obtain more equipment when you are running low. If you have run out completely, contact the Children’s continuing care team to inform them so they may source equipment as quickly as possible on your behalf and advise the safest way to manage this situation until that stock arrives.

Can I take my child swimming?

Great care and consideration needs to take place around this activity for children with tracheostomy. The hygiene of public swimming pools is variable and a child with a tracheostomy is at greater risk of picking up an infection. Many local hospices have hydrotherapy facilities and can enable long term ventilated children to swim safely surrounded by appropriately trained staff, therefore this is the best option for enabling your child to participate in this activity.