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, e.g. 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.

Care plan

Everyone with MND is affected differently, so ‘one size does not fit all’. A care plan must be developed with the individual and those close to them to ensure a comprehensive and appropriate plan of care is developed.

Due to the fact that MND progresses so rapidly, this plan needs to be reviewed regularly to respond to any changes. The plan may involve a number of organisations and should be co-ordinated by a key worker. This may be the person with MND or a relative.

Key points to creating a care plan and maintaining it are:

  • the wishes of the person with the condition are paramount
  • communication issues should not prevent an assessment of needs
  • a care plan should provide sufficient information to guide those involved in delivering care
  • it should be updated regularly as the condition progresses
  • a single point of contact for co-ordination of care should be established.

Culture and spirituality

Spiritual and cultural beliefs are a vital part of who a person is and may have an increased significance for the person and their loved ones when facing a life limiting illness. Each person will have cultural, spiritual and religious beliefs that will shape the care you give. You can address cultural and religious needs by communicating with people about what is important to them. Be mindful that:

  • for some people spirituality may be linked to a belief system and for others it may be about finding meaning in what is happening
  • having a conversation and listening to people will help you understand and meet their needs
  • you don’t need to share a person’s values to respect them
  • a person may have rituals that they may need you to support them with before or after death
  • you won’t know what’s important to people unless you ask them
  • it is not possible to provide all the answers and a person may need further support by referral to a specialist team.

Where care can go wrong

In a rapidly progressing condition like MND, poor communication and record keeping can result in the wrong care being given and the person and those important to them experiencing unnecessary stress and pain.

Below, a carer gives her experience of what can happen when care goes wrong.

Working as part of the care team

”Anyone looking after a person with MND should make sure they have as much knowledge as possible. Carers also should not struggle, but make use of the fantastic equipment and aids that are available.” Amanda, professional carer

Working as part of the care team

Below, a health care professional gives her experience of caring for patients living with MND.

To care for someone with MND you will need to be aware of some of the complexities that may arise and the importance of timely referrals to other professionals and services to ensure continuity of care.

As the disease progresses and the person requires more assisted care, training for those involved in the care of the individual is required in the following areas:

  • assisting with medication
  • helping a person who has a feeding tube
  • using an assisted ventilation machine and other equipment
  • moving and handling equipment.

Record keeping

Accurate records must be kept of all care given and you must document any action taken, issues and the person’s condition at the time. This information should be shared with the rest of the multi-disciplinary team.

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