Swindon mother's fight for disabled daughter's community care

• Joanna Alexander spoke to ITV News about her fight for community care.

The mother of a 14-year-old girl living with severe disabilities is fighting for more community care to ensure her needs are met.

Poppy Alexander has had Cerebral Palsy since she was born and lives with severe brain damage and blindness.

Her mother, Joanna Alexander, says there is no support available for Poppy unless she is admitted into hospital, and is calling for a community chest physiotherapy to offer her interim support.

Chest physio is a type of physical therapy that helps clear mucus and other secretions from the lungs to improve airflow and lung function.

In the community, there is no chest physiotherapy provision that is commissioned by the Integrated Care Board for Great Western to provide.

"When she's unwell we have to do chest physio, nebulisers, suctioning - there's no support around to access any services in Swindon and North Wiltshire.

Joanna says she has contacted the Integrated Care Board but "they haven't done anything about it".

A chest physio would give support to Joanna and her family.

"It's exhausting. When we get up in the morning, if i've managed to have some sleep as I'm up with Poppy during the night - every morning I go in and think is she still here."

"Looking after Poppy is the easiest part, the bit thats stressful and emotionally draining is the constant fighting to get Poppy's needs met."

Poppy has been admitted to Bristol Children's Hospital seven times this year, but their local hospital is Great Western Hospital in Swindon, which she hopes could provide the chest physio.

Joanna says there are lots of families who "can't access chest physiotherapy in the community."

"Poppy has got a short life. We want to spend the limited time we've got with our children, having fun rather than doing paperwork and fighting for services which could save the NHS money as we won't be going to the hospital so much.

"She loves being outside, we take her surfing, we go sailing, she enjoys concerts and walks, being outside with her brothers and sisters and it would be lovely if we could do more than that."

A statement from Bath and North East Somerset, Swindon and Wiltshire Integrated Care Board says: “The ICB has an obligation to ensure that all children and young people, especially those with complex needs, are able to receive the services that are right for them, and we are sorry to hear of the Alexander family’s concerns regarding their daughter Poppy’s recent care.

“We have already met with the family to discuss these issues, and are actively looking at how we can support Poppy going forward.”