Woman with Severe ME and EDS starving to death in NHS hospital

UPDATE: 

We want to provide a brief update on Sami Berry’s case and what she needs help with now. The situation in hospital reached the point that Sami decided she had to self-discharge to try and stay alive. She is at home with a Percutaneous Endoscopic Jejunostomy (PEJ ) tube but she needs treatment with antiemetics to help keep any feed down. She is not doing well at all. If you have a suggestion for a private GP or a private specialist in the UK that does not require a GP recommendation, Sami is requesting that you please email her at samiberry589@gmail.com. The goal is to get Sami stabilized where she can tolerate feed from the PEJ tube if at all possible. Once she is more stable, then she can see what next steps are needed. Right now, her life is in danger.

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It shouldn’t be possible to die of starvation in an NHS hospital, but that is exactly what will happen without immediate intervention for a woman in the UK who is at this moment fighting for her life in an NHS Hospital. Multiple failures by the medical system have brought her to this point. 

Sami Berry is no stranger to illness or hospitals. Her initial experience came as an employee of the NHS  and then as a patient living with multiple debilitating illnesses including epilepsy, Ehlers-Danlos Syndrome (EDS), and severe myalgic encephalomyelitis (ME).

Sami went into hospital last November because she could not keep any food down due to a worsening of her EDS and ME. She is vomiting repeatedly. Her body is not allowing feeds through the tube placed in her abdomen. Her blood sugar levels are dangerously low. She has lost a tremendous amount of weight. It has been almost 40 days since she had any true nutrition.

Sami is very concerned she is going into intestinal failure and is at immediate risk of joining those with severe ME and complex chronic illness who have died under the negligence of the NHS. Maeve Boothby O'Neill,  Merryn Crofts, and Sophia Mirza are three recent examples. 

Sami desperately needs immediate intervention from a specialist who understands her complex chronic conditions. She cannot continue as she is and she is not getting the help she needs now. She has always been an amazing advocate for herself and others. We cannot allow her to die when it is preventable with the right help. Sami is so full of life and is an amazing mom to three children. She is one of the most positive and kind people you will meet. 

As of Wednesday the 8th of February following a Care Team meeting, Sami has no confidence that she will receive even the minimum of care she needs to stay alive, much less have a quality of life. While Sami has finally been given a tertiary to an expert, it is not scheduled until March 8th and will be done through private pay. Her past experience with her hospital care and what she has been told by her present consultant have made her extremely concerned that the specialist’s advice will not necessarily be taken on board and immediately implemented. She is running out of time. 

The complex chronic illness communities have mourned too many losses. We will not stand for one more. The NHS should and can do better. 

*MEAction has been in contact with Sami and her family to ensure we are up-to-date on her care. Late last week, #MEAction sent out a press release to help apply pressure on the hospital to get her the care she deserves. We have received interest from a few major press outlets and we are hopeful this will help to bring about the attention and care that Sami so deserves. Help us demand Sami get life-saving care by sharing this article on social media and with UK press.