Publications and Resources

These resources have been developed to help health and social care professionals who are caring for people affected by motor neurone disease (MND).

All publications are evidence based and reviewed by clinicians. They are regularly revised and correct at time of print.

We also have a wide range of publications for people affected by MND and a list of useful websites for finding out more about MND.

Information for download

The following items can also be ordered in hard copy by calling MND Connect on 0808 802 6262.

Booklets

Motor neurone disease - a guide for GPs and primary care teams
Endorsed by the Royal College of General Practitioners (RCGP), this publication aims to help health and social care professionals provide care and support to people with MND. It includes information about symptoms, aetiology and treatment. (Code: PX016)

Occupational therapy for motor neurone disease
This comprehensive guide provides information about MND and how to support people to adapt to their changing symptoms and achieve the best possible quality of life. Endorsed by the Royal College of Occupational Therapists. (Code: PX020)

MND in acute and emergency care
A succinct guide for emergency care professionals, including ambulance staff, on actions to take and things to consider when treating a person with MND. (Code: PX017)

Motor neurone disease for dental professionals
This booklet gives an overview of potential issues people with MND face with oral health and access to dental services, and includes suggestions to help dental professionals. (Code: PX021)

Cognitive change, frontotemporal dementia and MND
This booklet contains information on cognitive and behavioural change and dementia, and practical tips on management. (Code: PX018)

Caring for a person with motor neurone disease: a guide for care workers
This booklet is designed to give paid care workers information and practical tips on the care of someone with MND. (Code: PX011)

Supporting children and young people close to someone with MND
This booklet is for any professional working with children or young people who have a parent, guardian, grandparent or close relative with MND. This includes teachers, school nurses, youth workers and social workers. (Code: PX031)

A professional's guide to end of life care in MND
A booklet to help health and social care professionals to support people affected by MND with end of life concerns. (Code: PX012)

Multidisciplinary team working for MND
A guide to help health and social care professionals establish, develop and maintain an effective multidisciplinary team. (Code: PX010)

Information sheets

Head supports for people with motor neurone disease - information sheet P1
Guidance on head and neck supports for people with MND. (Code: P1)

Wheelchairs for people with motor neurone disease - information sheet P2
Information about access to wheelchair services and the types of wheelchairs recommended for people with MND. (Code: P2)

Managing saliva problems in motor neurone disease - information sheet P3
Strategies and treatment options for managing saliva problems experienced by people with MND. (Code: P3)

MND Just in Case kit - information sheet P4A
This sheet explains how health professionals can use and order the MND Just in Case Kit. (Code: P4A)

Providing medical evidence for benefit applications made by people with MND - information sheet P5
Guidance for health or social care professionals who may be asked to provide medical evidence to support a claim for disability/employment benefits made by someone with MND. (Code: P5)

Evaluation and management of respiratory symptoms in motor neurone disease - information sheet P6
Guidance for health professionals on respiratory symptoms in relation to MND. (Code: P6)

Dysphagia in motor neurone disease (MND) - information sheet P8
This information covers evaluation and management of swallowing problems. (Code: P8)

Oral suction - information sheet P9
Information about oral suction for secretion management. (Code: P9)

Voice banking - information sheet P10
Information about voice banking, message banking and voice repair.

Pain in motor neurone disease - information sheet P11
Information on pain management. (Code: P11)

Training films

Understanding MND is an introductory video for health and social care professionals. It features four people with MND, sharing their experiences of the condition.

You can view it here, or order hard copies on DVD or USB from MND Connect on 01604 611870.

Printed resources

The following items are available in hard copy only by calling MND Connect on 01604 611870.

Motor neurone disease: how to find out more
An introductory leaflet providing a basic outline of the disease, our services at the Association and the publications we can provide. This can be ordered to give out to people affected by MND.

DVD: Management of respiratory insufficiency in MND (NIV)
The DVD aims to improve knowledge, understanding and practice in relation to respiratory management in MND. It comes with relevant information sheets and notes on NICE guidance for non-invasive ventilation (NIV) and MND.

Respiratory checklist
A credit-card sized tool to carry with you, to assist when checking respiratory symptoms for people with MND.

Caring and MND: support for you
A comprehensive guide for family and unpaid carers who support someone living with MND. This guide is free to order, but a charge of £5 per copy (plus postage and packaging) applies if ordering in multiples or for other conditions.

Red flag tool for diagnosis

We’ve worked with The Royal College of General Practitioners (RCGP) to create a Red Flag tool for MND, which is designed to improve timely referrals to neurology and therefore speed up the time to accurate diagnosis.

You can also download or order the Red Flag tool in tool Welsh.

Just in Case Kit

The MND Just in Case kit is designed to hold medication that may be needed if a person with MND experiences a sudden change in their symptoms, such as breathlessness, coughing or choking. It is ordered by a GP for a named patient. Further information is available here.