Scots mum fears daughter will die after red tape scuppers lifesaving treatment

-Credit: (Image: UGC)
-Credit: (Image: UGC)

A desperately ill child is unable to have life-saving treatment because of NHS red tape. Freya Hunter, 14, needs to go into the Royal Hospital for Children, Glasgow, (RHCG) for a trial of a machine to help her breathing and keep her alive over winter.

But NHS Forth Valley is refusing to allow her team of nurses to travel with her to provide the complex nursing she needs.

Freya has severe cerebral palsy and has issues with respiration, but mum Carolynne fears that without the Bipap ventilation system her daughter may not survive.

The charity worker said: “Freya has a really compromised airway, she is completely -immobile and has to have everything done for her.

“She has two-to-one nursing care at home 24/7. She is non-verbal and she’s fed through her tummy and is on oxygen all the time.

“She needs to have lots of medical interventions all the time in terms of nebulisers and suction to clear her airway.”

Freya picked up three viruses and a chest infection last November and was so ill that in January she had to be placed on a -ventilator at the RHCG.

Once off the ventilator, Freya contracted sepsis but Carolynne insisted her care needs could not be met by regular hospital staff.

She said: “She was taken back to Forth Valley abruptly because Glasgow weren’t able to manage her specific care on the paediatric intensive care ward. It takes six months to train a person to look after Freya.

“I pleaded with Forth Valley to let the team who look after her at home to support us in Glasgow, but they refused.

“So she was transferred back to Forth Valley Hospital [in Stirlingshire] where nurses from home looked after her.”

It was recently discovered that Freya was retaining carbon dioxide and needs to be trialled for Bipap.

She had an appointment a fortnight ago but NHS Forth Valley refused to allow her team to accompany her.

Carolynne said: “Her dad and I were willing to provide the care during the day if some of her team would do the night shift. We couldn’t stay awake for the 96 hours she would be in to do it ourselves.”

The refusal meant the appointment had to be cancelled.

She added: “NHS -Scotland is failing her, the Scottish Government is failing her.”

Labour’s Jackie Baillie said: “In -Scotland there is one NHS so it seems extraordinary to me that health boards appear to be debating who is funding life-saving care for Freya.

“Priority should be given to the complex care of people with disabilities.”

Labour have vowed to cut the number of health boards if they win the Scottish Parliament election in 2026.

Baillie said this would “make it so much easier to provide integrated care across boundaries and across health and social care.”

NHS Forth Valley said all children admitted to hospital are “looked after by -experienced paediatric staff who are responsible for their care and treatment during any inpatient stay”.

It added: “Healthcare support workers who are employed to provide care at home would, therefore, not accompany children when they are admitted to hospital in other NHS boards.”

A spokesman from NHS GGC said: “While we cannot comment on individual cases, NHS Greater Glasgow and Clyde continues to work with other health boards, including Forth Valley, to ensure patients receive the highest possible standard of patient care.

“NHSGGC will always look to provide the appropriate care for our patients in the most suitable location for their needs.”

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