MindFreedom volunteer Alicia Pointon is in a care home in the United Kingdom, for multiple disabilities including traumatic brain injury. Alicia has supported many disabled and disenfranchised people who have called MindFreedom from the UK, but she is being denied vital healthcare for her own medical needs.
Because of her psychiatric history, medical providers are ignoring her wishes, treating all of her problems as psychiatric, and subjecting her to medical neglect.
In 2008 Alicia was hospitalized for severe dysmenorrhea and treated surgically for endometriosis. The dysmenorrhea continued, however, and she was just given psychiatric medication. Later in a psychiatric hospital, staff said that a brain scan showed signs of seizure activity. In addition to the dysmenorrhea she began to get frequent and severe Urinary Tract Infections .
Then in 2018 Alicia suffered a traumatic brain injury (TBI) and neck injury, diagnosed after an MRI scan at Queen Elizabeth Hospital. This was after a history of seizures even before this brain injury.
While traveling in Mexico, she went to Hospital Angeles-Lomas, with numbness in her head, dizziness and vomiting, and doctors there found several neuro-chemical issues, and tried to refer her for a consult with a neurosurgeon upon her return to the United Kingdom.
This past December, 2023, an MRI scan done at Milton Keynes Hospital showed involutional changes (atrophy of neurons) in the brain, narrowing of the arteries of Alicia’s head.
Dr Bartolome Oliver Abadal, a neurosurgeon in Barcelona, also did a tele-medicine consult with Alicia. He tried to refer her for further neurological treatment – including further brain scans and radiographs of the spine – care which she is not getting from the National Health Service (NHS) in the United Kingdom.
Alicia also has a history of serious kidney disease. When she was hospitalized for renal retention and haematuria (urinating blood) in 2021, tests showed she had highly-elevated levels of c-reactive protein and of creatinine.
Alicia AGAIN went into renal retention (unable to pee) last month and was given a catheter and strong antibiotics. And Alicia is AGAIN experiencing numbness in her head, intense lower back pain that is worse on the left side, dizziness and fainting, like she has before.
Even though Alicia was ruled to have full capacity, and legally allowed to go out from the care home on her own, care home staff have at times arbitrarily blocked her from going out for walks. And when Alicia managed to make doctors’ appointments for herself, care home staff pressured her to let them into the appointments with her – when Alicia has every right to be treated with privacy and confidentiality, without interference.
We are gravely concerned for Alicia Pointon’s survival.
The services she uses, have a history of neglecting the medical needs of patients – as documented by HealthWatch Worcestershire, which reported,
“Patients under the care of the South community assessment and recovery service were not kept safe… Assessment and monitoring of physical health in this service was inconsistent and assessment of patients’ mental health was not consistent.”
We know of instances where people’s medical needs were neglected because the person’s reports were deemed delusional and they died as a result.
Please write to Anna-Marie Hale, at Exemplar Health Care – which runs services that Alicia is receiving – at ahale@exemplarhc.com.
Write to her National Health Service (NHS) Advocate Joanne Poole at J.Poole@pohwer.net. Supporters able to call the United Kingdom can call (+44) 0300 456 2370.
Write to her local councilperson Lynn Denham at ldenham@worcestershire.gov.uk, also. Supporters able to call the United Kingdom can call her at (+44) 07828 971146.
Tell them in your own words:
Alicia Pointon is a Birmingham resident, who is in a care home for multiple disabilities. She has the full legal right to go out from the care home to other places. Staff must respect this right, and must not pressure her to let them into private meetings between Alicia and her doctors.
Alicia must be given follow-up renal and neurological care that she has been denied, including a Transcranial Doppler Scan that other private doctors have tried to refer her for. The healthcare providers cannot use her psychiatric diagnosis as an excuse to neglect her.
Ask them to protect Alicia from this medical abuse.
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Supporters in the United Kingdom who may be able to help locally can reach out to MindFreedom directly at office@mindfreedom.org