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Gigi Update: Lewisham Hospital Removes Gigi’s Pain Medication, Leaving Her in Rising Pain

Gigi riding a mobility scooter.

An update on Gigi’s situation: Gigi’s family are launching an urgent appeal to find lawyers to bring their daughter, 17, home from Children’s Ward in Lewisham Hospital, London. Her family is desperate to bring her home, but the hospital has withdrawn Gigi’s pain medication, leaving her in steadily rising pain and making the move impossible. The hospital claims Gigi is in pain from inactivity – not from the effects of myalgic encephalomyelitis (ME). 

Her family believes Gigi can best recover at home and not on a hospital ward. Gigi urgently needs legal help to restore her pain relief and help her return home. 

Gigi’s family are seeking legal representation from experts in the area who can speak on her behalf. Gigi is desperate to come home. Her family is desperate to have her home. Will you help? Please share this message far and wide so that more people read about her case, and can help Gigi’s family find a lawyer. 

You can also donate to Gigi’s Gofundme for legal representation costs. Donate here

At Lewisham hospital, Gigi was put on an open ward, the doctor told her to sit up for long periods of time and remove her eye mask for dark glasses, and she was continually pressured to undergo physiotherapy – all conditions that can harm someone with severe ME whose body cannot tolerate such stimulus or forced exertion. Gigi lost the ability to speak or move independently during her hospital stay, which her family suspects is from the staff’s insufficient knowledge of the care required for people with severe ME. 

Gigi was also threatened with being sectioned  – forced institutionalization – against her will to a psychiatric hospital when a doctor dismissed her symptoms of severe ME – her inability to eat, speak or walk – as pervasive refusal syndrome, meaning that she is either consciously, or subconsciously withdrawing from the world because of some trauma, real or imagined. 

Pervasive refusal syndrome is not a formally recognised mental illness and has no empirical basis or agreed-upon treatment. The doctor has told Gigi’s family to stop “colluding” with their daughter. ME, meanwhile, has been recognised by the World Health Organisation (WHO) as a neurological disease since 1969.

If you’re a journalist, you can help by writing about Gigi’s story. #StandUpForGigi

Fighting for Care for Severe ME

Gigi riding a mobility scooter.

This is Gigi when she could still go out. At this point, we didn’t understand the true nature of her illness, so she used her pocket money to buy a mobility scooter. She was able to use it for about two months, before she became too weak even for this.

Gigi was admitted to Lewisham Hospital with severe myalgic encephalomyelitis (ME) four months ago. The family had fought for 10 months to persuade medics that Gigi was ill, and that it wasn’t “all in her mind”. At the family’s urging, she was eventually admitted to hospital with a bodyweight so low we were told she was “at risk of death”, where she was fitted with a Naso-Gastric (NG tube) to save her life. 

Gigi has recovered her bodyweight, but is still being fed by tube, is unable to move, or care for herself and still cannot talk. The family has fully cooperated with the hospital and have been trained in how to carry out Gigi’s personal care and to manage her NG tube feeding.

Gigi’s mother is herself a Clinical Psychologist with over 20 years’ experience of working with children.  Despite this, medical staff have refused to accept her mother’s personal and professional opinion regarding the cause of Gigi’s illness.  They continued to insist that it has a psychological basis.

Just after Christmas 2017, Gigi got the flu. Her family described it as “your everyday flu,” and thought she would shake it off. Instead, she began complaining of feeling tired and over the next 10 months, her condition got worse and worse. Eventually, she couldn’t do anything for herself.  She couldn’t come downstairs, she couldn’t wash or dress herself, she couldn’t attend school and she couldn’t play with her dog, Chally. She eventually became too tired even to eat or drink and she stopped talking.

After 10 months of trying to persuade the NHS that Gigi was ill, she was finally admitted to the hospital where she was fitted with a Naso-Gastric (NG tube) to save her life.

Prior to falling ill, Gigi was a vibrant and active teenager.  She had ambitions to be a writer and at just 14, had created her own website and had stories for sale on iTunes. When the M.E struck, Gigi had nearly completed her first book. She was also teaching herself Norweigan, because she had a dream to live in a house by a fjord and be a writer (she had actually started saving up for it!).

History of sectioning children with severe ME in the UK

The horror of Gigi’s situation is not an isolated incident as dozens of children with severe ME have been threatened with being sectioned in the UK and throughout Europe for being unable to snap out of their debilitating illness.  

In 2013, 24-year-old Karina Hansen was forcibly removed from her home in Denmark for declining to follow the orders of a doctor who had recommended graded exercise therapy, which had worsened her. Karina spent three-and-a-half-years detained at a psychiatric ward where her treatment further worsened her. After a five-year legal battle and ongoing support from the ME community, Karina was finally freed from state guardianship in 2018.  

In 2003, Sophia Mirza, a British woman with severe ME, was removed from her home and placed in a mental hospital, where her condition worsened. Sophia died in 2005, and an independent neuropathologist found Sophia’s spine contained massive infection. 

British pediatrician, Dr. Nigel Speight, has personally been involved in defending 28 cases in which adolescents were threatened with being sectioned due to severe ME, as health officials viewed their disease as a psychiatric issue they could overcome with talk therapy and exercise. 

 

Categories: All News, Awareness, Featured news, Human rights, Severe ME, United Kingdom

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