Care team

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.

Consultant: Usually a neurologist is responsible for assessment, diagnosis and symptom/care management. Dependent on the symptoms, other consultants may be involved eg. those specialising in respiratory medicine, palliative care or the  digestive system.

MND/ Neurological Specialist Nurse: If available in the patient’s area, these specialist nurses offer advice and information about neurological conditions. They can offer clinic appointments, make referrals on the patient’s behalf and may be able to offer home visits.

Palliative Care Team: They are involved at different stages of the illness, and their assistance can include symptom management, advice, counselling, emotional and spiritual support, complementary therapies and other support services. They focus on ensuring the patient maintains the best quality of life possible.

Hospice Care: This specialist care is designed to support the best quality of life for people living with MND and help them plan for the end of life. They  can also provide support and advice for  family and carers. These services can be provided at home.

Occupational Therapist: Provides advice on posture and equipment, to help the individual continue daily routines with as much independence as possible, including work if relevant. Getting an OT involved early ensures access to equipment is available as and when it’s required, they can help with practical day to day issues, wheelchairs/pressure relief etc and can assist with early referral to other services if required. Major adaptations to the home will be the responsibility of the local authority OT.

Physiotherapist: Provides advice on managing symptoms such as fatigue, cramps and spasticity in muscles. They can advise on appropriate passive or assisted exercise and positioning to optimise comfort. Although this may help to maximise the use of muscles that are not yet affected and increase flexibility by maintaining movement of joints, it does not delay the progression of the disease.

Speech and language therapists (SLT): Provides advice and assessment on speech and swallowing difficulties. An assessment with a SLT will determine which communication aid is best, as not all solutions suit everyone.

Dietitian: Provides advice on the most appropriate diet, to help maintain healthy weight and nutritional balance. As the disease progresses and swallowing becomes more difficult, the dietitian can start to discuss alternative feeding methods.

Pharmacist: Provides advice on the best types of medication in particular circumstances, eg. many medicines can be dispensed in liquid form for ease of swallowing.

Counselling and psychology services: Provide emotional and psychological support. The patient’s GP can usually refer them to an appropriate service, counsellor or psychologist, but there may be a waiting list. The local hospice will usually be able to offer counselling as part of their palliative care support.

Social care services: Provide advice on grants and benefits, information and social care arrangements. They can arrange packages of care and major adaptations.