Types of care and who provides them
Multidisciplinary care helps you live better, and may help you to live longer, with MND.
Research has shown that health professionals can give you better care and advice when they are knowledgeable about MND and have a coordinated, multidisciplinary approach to your care.
People living with MND are likely to need advice about mobility, communication, breathing, nutrition, managing other symptoms, and getting community support. Multidisciplinary care occurs when health professionals, from different disciplines, work together to address as many of these needs as possible. Each individual with MND experiences their own unique combination of symptoms and will benefit from different combinations of care.
A multidisciplinary care team for people with MND usually includes a GP, allied health professionals (such as a dietitian, occupational therapist, physiotherapist, and speech-language therapist), and local palliative and community workers.
Multidisciplinary care provides you with a direct link to one contact person, who is usually your MND New Zealand Support Team Member. (In some DHB areas you may also be assigned a nurse coordinator.) Your Support Team Member can advise you about regular review of symptoms and link you in with care from your team of health professionals. They will help you get information, support and referral to the right services when your needs change, so that any difficulties can be dealt with promptly.
Our Support Team is experienced in making sure our MND clients have access to the right health service provider at the right time. MND Support Team Members offer one-to-one contact by phone, email, text, Skype or Zoom, and visits. They liaise with your healthcare team and may accompany you to appointments if you wish. The aim is to support you and your whanau and help you remain as independent as possible so that your quality of life and control is maintained. Some people with MND hesitate to accept help and advice, questioning its value if the condition cannot be cured - but much can be done to manage the symptoms and difficulties experienced. Don’t wait until things have become difficult before you accept assistance - managing MND is a team effort.
Read our 2018 Research Update: Multidisciplinary Clinics for more in-depth information about current research into the life-extending importance of multidisciplinary clinics in providing best practice care for people with MND.
Health Professionals who can help
At various points along your journey you will encounter a range of specialists and services. Some will become involved with you more than others. You may not need all services listed below.
Research indicates that quality of life is improved when the health professionals and service agencies have a coordinated approach to care with regular communication liaison and networking. This extended team is often referred to as the multi-disciplinary team (MDT) or the primary health care team and will include some of the people listed below.
It is helpful if you can establish a relationship with these people early, even if you do not need specific assistance at that stage. They can help you to anticipate needs so that you don’t have to wait for assistance when you do need it.
The general practitioner (GP) is usually the first point of medical contact for a person with MND. GPs can carry out a basic neurological examination, and recognise symptoms that indicate the need for referral to a neurologist. (MND NZ’s 'Red Flags' tool helps GPs recognise when this is the appropriate referral.) The GP will then liaise with the neurologist, other specialists and allied health care providers to provide on-going care and to maintain quality of life.
The neurologist does tests that exclude other conditions that are not MND before confirming MND. The neurologist will monitor the progress of the disease and help to initiate supportive care at appropriate times.
An occupational therapist (OT) helps to maintain mobility, function and independence. OTs can advise on different ways of performing tasks and help you choose and obtain equipment to assist you to complete activities of daily living. Occupational therapists can visit private homes to advise on equipment or home alterations.
A physiotherapist helps maintain physical activity and mobility. They can also provide advice on how to manage respiratory symptoms. Physiotherapists can instruct carers in the techniques of positioning and transfer to avoid injury to themselves or the person with MND.
The speech-language therapist helps in the management of communication and swallowing. They can advise on strategies and devices to maintain communication, and advise on swallowing techniques and food consistencies that help compensate for difficulties.
A dietitian provides dietary advice to help you maintain adequate nutrition and hydration, at all stages of the disease.
The respiratory specialist is a doctor who works with a team specialising in disorders of the lungs and breathing. The respiratory specialist team provides information and advice about breathing difficulties that can occur with MND.
A community or district nurse can provide a range of nursing and ancillary services to people in their own homes. Services are usually obtained by referral from a health professional such as a GP.
A social worker can provide information on community services that may assist you with information about benefits, accommodation, legal, financial and other issues.
Psychologist or accredited counsellors support people experiencing significant change in their lives. Counselling is available through various agencies for the person with MND and their whanau.
Palliative Care Team and Hospice Services
The palliative care team specialises in supporting quality of life for people with life-limiting conditions. The team is often based at a local hospice and may include medical specialists, nurses, social workers and counsellors. They can help with symptom management, emotional support, advance care planning, and advise about medications. Community teams support people to remain at home; respite care is available at some hospices as well as end-of-life support.
Some DHBs provide specialist MND clinics. These provide reviews and then liaise with the various health professionals involved with an individual's care.
Needs Assessment and Service Co-ordination (NASC) Agencies
Local agencies assess and co-ordinate carer support packages to enable people to remain in their own home. They also co-ordinate arrangements for respite care, and for those who wish or need to move into residential care.
Total Mobility and Mobility Parking
Mobility Parking Permits can be purchased at a small cost through local agencies to enable parking close to facilities if mobility is an issue for you.
In some areas, local councils provide subsidised taxis under the Total Mobility Scheme for those unable to use public transport.
See Getting About for more detailed advice.
Some policies allow for early pay-out following confirmation of an MND diagnosis by a doctor. Check with your insurer.
For more detailed information about financial support you may be entitled to, see Financial Assistance.