Care team and caring person MND

People with MND may need as many as 18 health and social care professionals providing care at any one time. This clearly needs co-ordination to work effectively. Co-ordinated care can improve the quality of life of people with MND and provide value for money for the NHS by preventing crises and emergency hospital admissions. Care should be co-ordinated by a specialist key worker with experience of MND who can anticipate needs and ensure they are met on time. The people providing care are often called a multidisciplinary team (MDT).

Below, Dame Barbara Monroe gives her insight into how professionals can best support those with MND and other long term conditions (this clip is taken from a number of RCN lectures).

Coordination of care

MND requires a multidisciplinary team (MDT) shared care approach, and communication between all professionals and all sectors is vital for a good experience. It is often better to see a person in their own environment, as you can often establish a better relationship and understanding of their individual needs.

The multidisciplinary team

Patient: The person with MND must be seen as part of the multidisciplinary team. They may have knowledge of the condition and will definitely know how it is affecting them, they may be the first to notice any changes. Keeping them involved with their care and respecting their wishes is crucial. Remember most people will have the mental capacity to make decisions about their care, it is often their ability to communicate that can be affected.

Unpaid carer: It may be a direct family member(s) or friend, who undertakes the practical and emotional caring responsibilities. If appropriate, the main carer should be involved in the development of the care plan, as they are a vital support for the patient. They should be seen as part of the team, they may notice changes in the person living with MND and as the illness progresses may be influential in decision making.

Care worker: They often have frequent contact with the person, and get a good overview of how they are day to day, becoming aware of changes earlier. They are in a good position to alert the right people, which may help to get support in place sooner.

There is a lot that can be done to manage the symptoms of MND, to enable the person to continue to maintain their independence for as long as possible and to help them deal with the emotional impact of MND.

We have put together some recommendations based on national guidance, along with some quick tips and suggestions from other health care professionals who have experience of caring for people with MND.

In the recording below, a health care professional offers their insights into the challenges of caring for those with MND.