The care worker’s role
Motor neurone disease (MND) is a progressive and terminal disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This information is for you if you’re a care worker – someone who is paid to provide care for people who are unable to look after their own care needs.
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As a care worker, you play a key role in helping to maintain quality of life for a person with MND.
You may be in more frequent contact with the person than other professionals involved in their care, so you will have a good overview of how they are day to day and will become aware of changes in their condition, or any extra needs they have.
With MND, it can be difficult to predict what might happen next and what support might be needed. If you notice any early signs of change and alert the right people, this may help to get support in place sooner.
If you are able to give detailed, objective feedback on the person’s condition and any changes, this can be very useful for other professionals who are providing care.
There may be a range of professionals involved in the care of a person with MND. This is often called the multidisciplinary team. As a professional care worker, you are a key part of the team.
When you first start caring for someone, find out who you would need to contact if certain issues or queries come up.
If you think the person with MND would benefit from extra support:
- encourage the person to raise this with their GP or specialist team
- report the issue to your manager or supervisor who should contact the person’s GP or specialist team
- speak to the person’s GP or MND team if you have direct contact.
The person with MND, and any unpaid carers they have, should also be seen as part of the multidisciplinary team. They will have expert knowledge of the condition and its effects. If the person has family around them, they will often be part of the care team.
Good communication with the person’s unpaid carer(s) is vital if you are providing care in addition to the care they provide, especially if you are working within their home. While a professional carer may be involved to provide respite breaks for family carers, family carers may also step in to allow professional carers to have breaks from their caring duties. During the handover of responsibilities, they will need to be made aware of any developments or changes in procedures. Alongside the person with MND, the family will also be very influential in executive decision-making, so precise communication with family members is very important.
If the person with MND needs to be taken to hospital in an emergency, don’t be afraid to offer information that may help the ambulance staff or paramedics. Ambulance staff may not know very much about MND and might not be aware, for example, that they should not:
- lie the person flat
- automatically give the person oxygen, unless it is under guidance of an MND specialist. See our information for acute and emergency staff.
To care effectively for a person with MND, you will need training in:
- MND – including how it progresses and important markers to look out for
- good communication skills – a care worker should know how to communicate with, and understand the needs of, a person who may have lost or has difficulty with their speech
- moving and handling
- dignity in care provision
- cognitive change and dementia.
Further training should also be available if needed, in:
- assisting with medication
- helping a person who has a feeding tube
- using an assisted ventilation machine and other equipment.
The training given by care agencies will usually cover basic skills, but often will not cover specific information about the care of people with MND or how to use specialist pieces of equipment. There may be many different pieces of equipment you need to use when caring for a person with MND.
Training in specific areas of care should be provided by relevant members of the person’s health and social care team. Regional staff from the MND Association can also offer awareness training about MND and the Association’s services, as well as more detailed study days. Contact MND Connect
All care should be supported by documentation that includes details of any actions taken, any issues, and monitoring of the person’s condition. Accurate records can help identify aspects of the environment or the person’s condition that are positively or negatively affecting the care you provide. These records can also help other carers that you’re working with, perhaps those who are doing different shifts, to help them provide the best possible care.
Records kept may include:
- a care plan
- a daily diary
- a medication sheet
- relevant contact numbers
- details of emergency procedures
- services check sheets (eg fire alarm)
- body weight measurements (taken every week)
- accident policies and report sheets
- an up-to-date risk assessment
- complaints procedures and report forms
- death of a client policies and procedures.
A daily diary should include:
- food and drink consumed
- health and mood
- skin pressure areas and any treatment
- night care
- washing, bathing and dressing (self or supported)
- bowel habits (to avoid constipation)
- a diary of any other events.
Ideally, a person with MND should be cared for by the same person or team of people. We appreciate that this is difficult in practice, but the number of carers should be kept to a minimum and the person with MND should be told about any changes.