Locked in Syndrome Mentor

Kate continues to digitally advocate and mentor anyone from anywhere, affected by locked in syndrome from London to South Korea, Australia to Canada, Germany to Mexico etc.  She specialises in giving early ‘lay’ locked in syndrome tips, advice and support to give patients the best chance to improve their health outcomes.

Most clinicians in her experience hold very pessimistic views after an early diagnosis of locked in or locked in syndrome.  In fact, her husband was told in ICU, “She’d be better off dead!” Clinicians don’t have a crystal ball do they?

She voluntarily inspires and tries to EMPOWER patients to take control of their possible improvements by taking a person-centred and self-management approach to their health. The loved-ones who seek Kate’s help are invaluable in the process of a patients’ journey. Kate’s knowledge is second to none, with her remarkable experience and years of running her advocacy charity, Fighting Strokes.

Her input gives people affected by locked in syndrome the skills, knowledge and confidence to take back some control. Rather like the pioneering Patient Activation Measure (PAM) questionnaire which could help the NHS realise their Five Year Forward View Vision.

Kate famously walked out of hospital, and ran again (see videos below) just 21 months after her brainstem stroke diagnosed with Locked In Syndrome. It is fair to say that Kate achieved more in 6 years than most people would do in a lifetime and she hasn’t stopped!

For example, we need a national database of incidences of brainstem stroke patients with far better formal support. When the brainstem stroke bomb explodes, it’s frankly horrific and scary. It’s like instant Motor Neurone.

New Research?

Kate passionately campaigns to stop the clinical misdiagnosis of early onset brainstem stroke symptoms in emergency care units – A & E, Emergency Department, Casualty or in Emergency Rooms – around the world & UK.  She fundamentally believes, from her own experience and that of 100’s of other brainstem stroke survivors globally, that most patients are in fact initially misdiagnosed when patients first present in A & E.  They are often turned away from A & E with ‘a migraine’ or ‘stress’ or ‘vertigo’ or and then re-admitted with far worse life threatening, a poor prognosis & hugely costly treatment costs. 

If a stroke in the brain stem results from a clot, the faster blood flow can be restored in this critical area, the better the chances for recovery. “It is important that the public and healthcare professionals know all of the symptoms of a stroke and are aware that some brain stem strokes heave distinct symptom,” Dr. Bernstein says. “Patients need to receive treatment as soon as possible to promote the best recovery.”

So as far as Kate’s concerned,

“Never ever let anyone lower your expectations!”

With an early locked in syndrome or locked in diagnosis, no one knows where the survivor will end up in terms of their physical or emotional recovery.  It is therefore important to retain HOPE and be aware that early rehabilitation, intensive, frequent and repetitive actions, 7 days a week will help. I’ve never met a vegetative locked in syndrome patient, just unconscious ones.  Strokes are all different, as are the motivations and desires of patients and their families. There are simply;

“No promises just possibilities.”
Impossible is 2 letters too long!”
“It’s actually I’mPOSSIBLE!

Real Patient Stories

Kate recently visited a young brainstem survivor in Poland. After a surprise visit by Kate, and only 10 hours after leaving her bedside, Klaudia she was able to turn her hand completely over! Watch this:

Christine Waddell

This woman is a true superstar… you’ll not believe why!

Christine has suffered severe locked in syndrome for 20 years. Back in January 2012 she became inspired after hearing my story in the media at the time. She was still motivated to improve! At that point she had been in full locked in syndrome for 17 years in a wheelchair with a headrest and an existence nil-by-mouth. With a renewed self-belief, dreaming big a sprinkling of hope, a big dose of hard work, and a lucky call to Neural Pathways, Christine is now enjoying remarkable, utterly head scratching progress! Follow her here: https://www.facebook.com/DiaryOfAFighter/


She can stand and unbelievably she eats three meals per day and can enjoy a Costa coffee now, after 19 years of being nil-by-mouth! I fail to find the words to explain this.

Kati Van De Hoeven

Not everyone enjoys significant outcome functional improvement, yet they still make an inspirational and MASSIVE positive difference to the lives of many globally. So I give you former model who has been in severe locked in syndrome for 21 years! Kati Van De Hoeven (she is also a TEDx speaker!)  http://katilepisto.fi/en/blogi/



TerranceIt is true, not everyone survives and thrives after a brainstem stroke with Locked in syndrome like poor Terrance from Belfast.

Terrence, and his family will always leave an indelible mark on my mind and I cherish the humour, Earl Grey Tea and homemade vegetable soup!