Each individual with MND experiences their own unique combination of symptoms and will benefit from different combinations of care.
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.
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.
Our Support Team> is experienced in making sure our MND clients have access to the right health service provider at the right time.
MND care and management
Professionals providing your care may be from the same organisation or from a range of organisations. They may work in the community, hospital, clinic, residential and other care settings.
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 following:
The General Practitioner
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
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.
The Occupational Therapist
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 disability aids. Occupational therapists can visit private homes to advise on equipment or home alterations.
The Physiotherapist
A physiotherapist helps maintain physical activity and mobility. 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
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.
The Dietitian
A dietitian provides dietary advice to help you maintain adequate nutrition and hydration, at all stages of the disease.
The Respiratory Specialist
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.
The District Nurse
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.
The Social Worker
A social worker can provide information on community services that may assist you with information about benefits, accommodation, legal, financial and other issues.
The Counsellor
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.
The 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 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.
MND Clinic
Some DHBs provide specialist MND clinics. These provide reviews and then liaise with the various health professionals involved with an individual's care.
MND Support Worker
MND Support Workers offer one-to-one contact by phone, email, text, Skype and visits. They liaise with your healthcare team and may accompany you to MND Clinic appointments if you wish. Support Workers help you access information and support, and advocate for the needs of people with MND.
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.
Life Insurance
Some policies allow for early pay-out following confirmation of an MND diagnosis by a doctor. Check with your insurer.
