Motor Neurone Disease (MND)

The Motor Neurone Disease (MND) Service is run jointly by Dorothy House and the RUH. The service offers a single point of contact and ongoing support for patients with MND, their families and carers.

This service offers specialist information, sign-posting, support and guidance from diagnosis onwards. An MND specialist practitioner works within the RUH, Dorothy House and the community, and can visit patients in their homes.

Our services

The MND specialist practitioner can offer:

 

Dawn Beckett - Dorothy House's MND Specialist Practitioner

“I have always been passionate about MND as I have a personal experience with it and worked with people living with MND since 2008, when I qualified as an Occupational Therapist. Then in 2018, a secondment opportunity to join the MND service between the RUH and DH became available, which I jumped at. I loved every minute of it, so was thrilled when the permanent position was offered to me a year later, and haven’t looked back since!

It is important to me that people living with MND do not feel alone and have equal access to services available to other people living with a life-limiting illness. I am also keen to share my knowledge and love of the disease through education and training with other health care professionals and learning from those living with the disease as they are the experts!”

Hospice stories

Simon's story

In 2023, Simon was diagnosed with Motor Neurone Disease (MND) at 40 years old. In May 2023, he started to notice twitching in his left shoulder and weakness in his left hand, which quickly progressed. Within a month, Simon had been clinically diagnosed, which was supported by an EMG. Following diagnosis, Simon has since been supported by the MND service at Dorothy House which is run jointly with the RUH. The service offers a single point of contact and ongoing support for patients with MND, their families and carers.

You can read Simon’s full story here.

Andrea's story - Day Patient Services

Andrea shares how Dorothy House supported her and her family through her Motor Neurone Disease diagnosis. Our Day Patient Services not only allowed Andrea to meet other patients and be creative with our Art Therapies team, but it meant Andrea’s husband could take this time as respite at home whilst our teams cared for her at the Hospice.

 

Richard and Sophie's story - Royal Marines Band tribute

Newlyweds Sophie and Richard were part of the Royal Marines Band, based at HMS Collingwood. Sophie, aged 27, played flute and saxophone in the band before she was diagnosed with Motor Neurone Disease (MND) in January 2024. Thanks to Richard, on Tuesday 18 June, the band made the journey to Winsley, where Sophie had been staying on our Inpatient Unit (IPU),  to perform for Sophie and Richard, as well as our patients, staff and volunteers. Read the full story here.

Contact

  • You can contact our MND Specialist Practitioner on 01225 824 673 or 07870 984 469
  • This is not an emergency service: to obtain urgent medical advice contact your GP or attend your nearest A&E department by ambulance, if necessary.

Links & downloads

Related content

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Motor Neurone Disease – Simon’s story

  • 21 June, 2024
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Motor Neurone Disease study findings published in BMC Palliative Care

  • 15 May, 2024
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