A Southport mother has expressed profound distress over her daughter's prolonged stay in hospital, describing her treatment as 'inhumane' due to an ongoing dispute over community care funding. Natasha, 27, who lives with a rare progressive neurological disease, has been an inpatient for more than 14 months, despite being medically fit for discharge for the past 11 months. Her mother, Elaine, fears her daughter may never leave hospital, highlighting the devastating impact of the administrative delays.
Natasha was born with Leigh's Disease, a rare degenerative disorder affecting the brain and spinal cord, and also has GAMT deficiency, which impairs brain development and triggers epileptic seizures. After experiencing life-threatening seizures 14 months ago, she was admitted to the specialist Walton Centre, where her condition was stabilised. While the family commends the 'amazing' care provided by the hospital staff, Natasha is now unable to return home due to the absence of a crucial complex care package.
A specialist placement in Bolton was secured several weeks ago by the family's social worker, with plans for Natasha's transfer in early June. However, last-minute funding complications led to the transfer being paused. A subsequent attempt planned for earlier this week was also halted, leaving Elaine 'absolutely devastated'. She explained that all of Natasha's belongings, medical equipment, and supplies have already been redirected to the new home, with staff in place, but Natasha remains in hospital.
The core of the issue appears to be a disagreement over funding responsibilities. While Natasha is a resident of Southport, falling under NHS Cheshire and Merseyside, her secured care placement is located in Bolton, which is covered by NHS Greater Manchester. Although Sefton Council has agreed to contribute its share, NHS Cheshire and Merseyside has not yet determined which part of the NHS should cover its portion of the costs for the Bolton placement. This bureaucratic impasse is preventing Natasha from accessing the care she needs outside of a hospital setting.
Elaine's local MP, Patrick Hurley, has been actively involved in assisting the family and is now urging all organisations involved to convene and resolve the situation. He emphasised the urgency, stating, 'This is Natasha's life.' Elaine also shared that Natasha has begun pulling out her own hair, unable to comprehend why she cannot leave. She expressed concern that the specialist placement, which took considerable effort to secure, may not be held indefinitely, further compounding the family's anxieties.
NHS Cheshire and Merseyside acknowledged the situation, stating, 'We are sorry that there has been a delay in Natasha's discharge.' This case underscores the challenges faced by patients with complex needs when navigating the intricacies of community care funding across different NHS integrated care boards. For further information on navigating NHS care pathways, patients and their families can consult NHS guidelines or speak with their GP.