Motor Neurone Disease Study Day

ALL IN-PERSON PLACES ARE NOW FULL – if you would like to join this session online instead, then please click the book onto course button.

As the session is now full for the in-person session, we will be hosting the event in a hybrid manner, so we can extend this study day out to more people. If you would like to join remotely, please book as normal and you will be emailed a meeting link before the session.

The presenters on this session have a great depth of expertise, knowledge and experience and want to share this with other professionals who wish to advance their own knowledge in the area of MND.

We are pleased to announce that the session is being supported by Zambon, who are kindly sponsoring the lunch and refreshments. Zambon has had no input into the content or organisation of the Study Day.

Course delivery

This session is brought to you by the Dorothy House Education team and will include a mixture of in-house and external professionals

Dawn Beckett is an experienced Occupational Therapist and has worked in neurology for the past 12 years. She has always had a passion and specialist interest in Motor Neurone Disease, so jumped at the opportunity of specialising in the field and working alongside the consultants at the Royal United Hospital in Bath, Dorothy House and all the community teams involved. She is always keen to share her knowledge and passion for MND to ensure that a patient’s experience is the best it can be and to give clinicians the confidence in working with people living with MND.

Dr Rebecca Mason is a Respiratory Consultant and is the lead for Sleep and Non-invasive ventilation at the RUH. Since her appointment in 2014 has developed a Respiratory clinic dedicated to patients with Neuromuscular disease.

Dr Edward Presswood has been a palliative medicine consultant at Dorothy House Hospice since 2020. He has supported the motor neurone disease team from the RUH during this time. He is a principle investigator for the OpticALS study (nutrition based intervention for patients living with MND) and is contributing to the VentMND study (qualitative study related to withdrawal of ventilation). Edward’s main clinical interest is ensuring that patients receive goal concordant care and that symptoms are well controlled.

Charlie Hardaker is a respiratory physiotherapist and co-lead of the Home Ventilation service, University Hospitals Bristol and Weston NHS Foundation trust. She is a member of the MNDA core expert group, providing specialist knowledge and advice on long term ventilation and respiratory.

Jemima Penrose is an integrative, trauma informed counsellor working in the Family Support Team at Dorothy House . Jemima offers pre-bereavement and bereavement counselling support to families, couples and individuals. Over the past 11 years Jemima has supported many MND patients and their families both in the community and on the IPU.

Anne Baldie is a Social Worker in the Family Support Team at Dorothy House. Anne works primarily with adults, both patients and their families, pre and post bereavement, offering a psycho-social model of social work intervention. Anne offers both practical and emotional support to the people she works with. Anne has been working at Dorothy House for just over a year, but has extensive previous experience as a statutory Social Worker.

More to follow, please check back soon!

Course details

This session is designed to share information and experience about Motor Neurone Disease (MND), specific interventions and what support is available. We will be including the following areas:

To understand the basics about MND, diagnosis and research
To have a greater insight into the daily life of a patient and carer living with MND
To have an appreciation of the complexities of MND and the importance of a sound MDT approach
To recognise the importance of early intervention with feeding tubes, Non-invasive ventilation and other life prolonging interventions
To appreciate the benefit of palliative care support soon after diagnosis

Draft Programme

Draft plan of the day, subject to change:

What is MND? – Dr Gurjit Chohan, Consultant Neurologist, RUH
MND MDT / Saliva management – Dawn Beckett, MND Specialist Practitioner, RUH/DH
Speech and Language Therapy – Jane Renno, SLT, ESD and Stroke Service, BANES
Research – David Lester, Oxford
Psychological support – Jemima Penrose & Anne Baldie, DH
Patient / carer perspective
Gastrostomy – Zoe Warman, Nutrition Nurse, RUH
Respiratory compromise – Dr Rebecca Mason, Respiratory Consultant, RUH
NIV and cough augmentation – Charlotte Hardaker, BRI Sleep Unit
Palliative Care – Dr Ed Presswood, Palliative Care Consultant, DH
Q&A

Who should attend?

Clinicians working with Motor Neurone Disease patients or have a passion for Motor Neurone Disease. This may include; nurse specialists, nurses, occupational therapists, physiotherapists, dietitians, medics, anyone else who have worked or are working with MND patients and want to know more.