Family experiences

When Charley-Ann was admitted to her local hospital at the age of 22 months her parents, Tammy and Pete, had no idea that it would take over 4 years before she would come home again.

Charley-Ann had been unwell for a couple of weeks and was admitted to hospital when her condition suddenly worsened. Doctors were unable to find out what was causing her symptoms, so she was transferred to a large children’s hospital where further tests showed that she had a number of lesions on her brain. Charley-Ann was admitted to intensive care where she was put on a ventilator and started on a long course of antibiotics and other medication. After some time, the doctors tried to take her off the ventilator but it became clear that this was not going to be possible and that she would have to stay on the ventilator for the long-term.

The plan to get Charley-Ann home from hospital took a long time because of the number of people involved in her care and the need to make sure that her home environment was suitable. All the carers she needed, including Tammy and Pete, had to be specially trained in how to use the ventilator and manage her tracheostomy. Charley-Ann was finally discharged from hospital in the summer of 2007, once it had been established that her complex care needs could be met at home.

With the hospital being over an hour away from home,Tammy had stayed with Charley-Ann throughout her time as an in-patient. Living away from the rest of her family was a huge strain on everyone, especially for Charley-Ann's brother, who had to adapt very quickly to not having his mum around. Families of children requiring long-term hospital care can become fractured, so Tammy, Pete and the children had to learn to live together again following Charley-Ann's discharge.

Now 7 years old, Charley-Ann continues to be cared for at home in a familiar environment by people she knows and trusts. Despite her ongoing need for 24-hour care, everyone is delighted that the family has now been re-united.

Share your story

It is the experience of families that is the most important part of the Better at Home campaign so we would love to hear from any parent or carer wishing to share their story - to get involved email campaign@wellchild.org.uk with your name and contact number or call Jody on 0845 458 8171.