With MND, getting the right treatment or care can feel complex. You may need help from a wide range of health and social care professionals. We provide information to assist you, based on the NICE guideline on motor neurone disease (NG42). The guideline provides recommendations to health and social care professionals about how to provide appropriate care.
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“It’s nice when I’m treated as a whole person and not just an illness.”Person with MND.
What do I need to think about?
Our Motor neurone disease checklist is designed to help you think about your needs and start to put support in place. It can help you think about who to contact if regular carers are unavailable for any reason. You can complete this onscreen if you wish or order a printed copy from our MND Connect helpline.
Our Types of care booklet gives an overview of the range of care available if you have MND or Kennedy's disease.
Our patient record Understanding my needs enables you to record your needs and personal preferences to guide hospital and hospice staff, or care workers in any setting. This can be helpful, as not all professionals are familiar with MND. The disease also affects each individual in different ways, so having a set of instructions for your own needs is important. You can complete this onscreen if you wish or order a printed copy from our MND Connect helpline.
Our information sheet 14A – Advance Decision to Refuse Treatment (ADRT), can help you record instructions for professionals about any treatments you wish to refuse or withdraw in specific circumstances in the future.
For other resources to communicate your needs, such as our MND alert card, wristband, speech card and notepad, see the Planning ahead section on our Information for people with or affected by MND page.
Pocket guide - what you should expect from your care
You may find our pocket sized booklet helpful, What you should expect from your care which can support discussions with health and social care professionals. This may help lead to better outcomes for treatment and care with MND. It features the main points of the NICE guideline on motor neurone disease (NG42).
The guideline was developed by the National Institute for Health and Care Excellence. It sets out recommendations for health and social care professionals about treatment and care for people with MND and their carers, covering a wide range of subjects.
Although these recommendations are not a legal requirement for professionals, they should be taken into account alongside your individual needs and preferences. The guideline stresses your right to be involved in discussions and make informed decisions about your care.
“If a person has dealings with the NHS in any way, they need to be making the people they see aware of the NICE Guideline, as it is so important to all of us affected by MND.”Person living with MND
We also provide information sheet 1A – About the NICE guideline on motor neurone disease, which explains how the guideline can help you in more detail.
You can use these resources to open discussions with health and social care professionals, and providers, about how to access suitable support.
What can I do if my needs are not being met?
If you do not receive the care or treatment you need, or have any problems, discuss this first with the relevant health or social care professional, or provider.
If this does not improve the situation, make a formal complaint or appeal to the service involved. They should be able to provide information or advise how to do this.
The following organisations may also be useful:
Patient Advice and Liaison Service (PALS) – For confidential advice and making a complaint about healthcare in England.
Care Quality Commission (CQC) – Contact the CQC if you are concerned about care from a provider in England. You can also use this site to search for a care service in England, such as a nursing home, then read the ratings from the most recent inspection.
Community Health Councils – For confidential advice and making a complaint about healthcare in Wales.
Care and Social Services Inspectorate Wales (CSSIW) – Contact the CSSIW if you are concerned about care from a provider in Wales. You can also use this site to search for a care service in Wales, such as a nursing home, then read the ratings from the most recent inspection.
Patient and Client Council – For confidential advice and making a complaint about healthcare in Northern Ireland.
The Regulation and Quality Improvement Authority (RQIA) – Contact the RQIA if you are concerned about care from a provider in Northern Ireland. You can also use this site to search for a care service in Northern Ireland, such as a nursing home, then read the ratings from the most recent inspection.
Page last updated: 16 August 2023
Next review: January 2025