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Respiratory support

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    Respiratory support

    I live in Northampton. Initially I was referred to the Oxford respiratory team under Anabel Nichol who have an excellent reputation and plenty of MND experience.

    However my palliative care consultant said Oxford will not do home visits when my condition deteriorates and that is required. So he said I should go to Leicester Glenfield (and referred me to them.) .

    My question is, will I receive the same level of care and expertise at Leicester? I have asked here and no one seems to go there.

    Should I stay with Oxford and hope somehow their lack of home support is not a problem?

    I'm really torn what to do. Northampton seems to have a massive gap in MND support and expertise.
    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

    If you're going to need help with NIV at home - from family or carers - somehow they'll need to get some training with the system. So it's worth asking how that would work in Oxford vs Leicester?

    For us the carers had to visit the hospital that was supplying the NIV. Other people might have different experiences.


      TinyLady Hi, I live in Hertfordshire and am cared for by the brilliant team at the National Hospital in Queen Square, London. Not far away but the journey time is close to an hour and a half. I would never expect a home visit from anyone from Queen Square. They use couriers to deliver equipment, my local hospice is very supportive and I get great support from the community based services (OT, Physio, Palliative Care, Speech & Language etc). The coordination between everyone seems to be really good. Hope this helps.
      Diagnosed October 2020 - See my blog at