Types of care and who provides them
There is a wide range of support available if you are diagnosed with MND or Kennedy’s disease, or supporting someone as a carer. Select from the following.
“We see so many professionals. We have a list on our fridge – there are around 20 of them: consultant, palliative care, occupational therapist…” Person with MND
Who is involved?
As motor neurone disease (MND) is considered a relatively rare disease, general health and social care professionals may not see many cases of it. It’s important to seek out specialists who have appropriate experience in its treatment and care. These will usually be those linked to neurological services.
The following list describes the main contacts you are likely to meet, depending on your needs. They may be part of:
- the community healthcare team
- a multidisciplinary team linked to an MND care centre, network or other neurology service
- a specialist ward in a hospital, hospice or clinic.
GP: your local doctor is a central medical contact. They can help diagnose, prescribe medicines, maintain medical records, provide information and guidance, and refer you to specialists.
Consultant neurologist: a doctor who specialises in the brain, spinal cord, nerves and muscles. They are experts on conditions such as MND and Kennedy’s disease.
Other consultants: other specialist doctors may be needed, such as a respiratory consultant for MND if breathing problems develop.
Specialist nurse: a nurse who has specialised in a relevant field, such as neurology.
MND care co-ordinator: the main contact at an MND care centre or network, who helps link you to services and specialists. A similar role is sometimes available in other neurological teams.
Community or district nurse: a local nurse who works closely with your GP and may offer home visits as a condition progresses. They can assist with medication, monitoring symptoms, provision of certain items of nursing equipment and advise on local services.
Speech and language therapist (SLT): a therapist who can assess difficulties with speech and communication, and eating, drinking and swallowing. They can provide guidance, therapy and advice on communication aids. If there is a waiting list or the NHS cannot provide the communication aid that you need, our Communication Aids Service can help guide you. MND Connect can provide contact details for this service.
Dietitian: an expert in nutrition, who often works closely with speech and language therapists. They can help you maintain weight if swallowing becomes difficult.
Occupational therapist (OT): a therapist who can help you remain as independent as possible, for as long as possible, through equipment for daily living and mobility, advising on adaptations to the home and guidance on how to do adapt the way you do things.
Physiotherapist: a therapist who can help you manage fatigue, cramps and stiffness in muscles and joints. They can advise on exercise, including assisted or passive exercise where someone helps you. Exercise cannot reverse damage to muscle groups weakened by MND, but it can strengthen muscles not yet affected and help improve or maintain range of movement in joints. A physiotherapist can also advise on ways to help prevent or manage falls.
Palliative care specialist: a professional trained to help improve quality of life for people with life-shortening conditions. As well as symptom control, they provide a wide range of support to meet practical, social, spiritual and psychological needs.
Respiratory specialist: a member of a respiratory team, such as a respiratory consultant or respiratory physiotherapist. These are experts in breathing problems. They can assess your needs and offer guidance on therapies and treatments, including assisted ventilation (mechanical breathing support).
Counselling and psychology: a GP can refer you to an appropriate service, counsellor or neuro-psychologist for either emotional or psychological support. This may be particularly important if any changes to thinking and behaviour are noticed during or after a diagnosis of MND. There may be a waiting list for this type of referral, but hospices, palliative care teams and social workers often provide counselling as part of their support.
Pharmacist: a professional who dispenses prescribed medicines. They can advise on the best types of medication, such as liquid forms, if available, to help with swallowing difficulties.
Complementary therapist: a therapist offering a therapy that works alongside conventional medicine to help ease symptoms and reduce feeling of stress or anxiety. These therapies are wide ranging, such as massage, acupuncture and reflexology.
Wheelchair services: NHS professionals who can assess seating needs and help arrange wheelchair provision.
Social worker or care manager: a professional who works for adult social care services or a care agency. They provide information, emotional support, and either needs assessment for people with MND or carers’ assessments. They can also provide guidance on care services, including arrangements for home help or nursing care homes.
Benefits adviser: a professional who can help with benefits queries and claims. On occasion they may need to ask members of your wider health and social care team for medical evidence to support a claim. Search online for government information for England and Wales at: www.gov.uk or for Northern Ireland at: www.nidirect.gov.uk or contact our own Benefits Advice Service for people with MND and their carers.
Area Support Co-ordinators (ASC): a professional who works for the MND Association, within a particular region of England, Wales or Northern Ireland. They ensure that people affected by MND are supported in accordance with their needs. See the ASC page for more information.
MND Association visitor (AV): One of our trained voluntary visitors, who provide confidential guidance, support and information to people with MND, their families and carers. They can make contact by email, telephone or in many cases, through home visits. See the Association visitors page for more information.
Your GP and community health care team
Based within a GP surgery or local clinic, your community health care team includes GPs and community or district nurses. It may also include specialists, such as speech and language therapists, dietitians, occupational therapists and physiotherapists.
Depending on their expertise, they can help with:
- referrals to specialists and services
- health checks and managing symptoms
- prescribing of medicines or access to equipment
- information and guidance
- carer support and training.
Contact your local GP surgery for help. Most offer an out-of-hours service during evenings and weekends.
Most NHS services are free, but you may have to pay for certain things such as dental services or larger pieces of equipment.
If you have MND, you usually qualify for exemption from prescription charges in England. Prescriptions are free in Wales and Northern Ireland.
Health and social care professionals who specialise in a particular area may work at the same location, but often work as a virtual team from different settings. Some may make home visits, but this is not always possible.
Specialists assess and monitor specific types of symptoms, such as swallowing difficulties. This type of NHS care is free.
If you need help for a particular symptom, ask your GP or another member of your health and social care team for a referral.
MND care centres and networks
We help to fund a national programme of MND care centres and networks across England, Wales and Northern Ireland. These are dedicated MND clinics where professionals come together to provide co-ordinated care and improve the standard of care for people with MND. They also give guidance to carers. Some clinical trials also run through these clinics.
If you cannot get to your nearest care centre or network clinic, your local neurology clinic also provides co-ordinated care for MND and we also work with these services to improve standards.
MND care centres and networks are not purpose built buildings. Appointments usually take place in a hospital or hospice. Some teams provide an outreach service to give opportunity for appointments across a wider area.
Find out more in our information sheet 3A – MND care centre and networks.
NHS Continuing Healthcare
If your needs become complex and require medical help, you may be eligible for NHS Continuing Healthcare (CHC) in England and Wales. If you qualify, all of your care needs will be met and funded, whether medical or personal care. This can sometimes be provided at home, but depending on your needs, you may have to receive this support in a nursing care home.
You must require a high level of healthcare and support to qualify, which will be assessed. Ask any member of your health and social care team for guidance about referral.
See our animated overview about CHC at the top of this page. Find out more in our information sheet 10D – NHS continuing healthcare
We also provide an information sheet for health and social care professionals NHS Continuing Healthcare for motor neurone disease. This may be useful to give to any professional involved in your assessment for CHC.
In Northern Ireland there is no guidance on NHS Continuing Healthcare, but health and social care trusts are encouraged to provide this support using the criteria followed by the rest of the UK.
Adult social care services
These services usually include social workers, care managers, care co-ordinators and occupational therapists. They can help arrange a needs assessment if you have MND, or a carer’s assessment if you provide support. They can also provide guidance about equipment, care services, other local support services, home adaptations, funding, residential or nursing care, emotional support and family support.
Contact your local authority in England and Wales, or your local health and social care trust in Northern Ireland.
Some equipment may be free, but you may have to pay towards services provided. This is worked out through a financial assessment. In Northern Ireland, home care services are free, but you may have to pay towards other types of help.
Find out more in our information sheet 10B – What is social care
We also provide an animated overview called What is social care? on our Animations page.
For information about benefits and financial support, see our benefits information page or contact our Benefits Advice Service for people with MND and their carers.
Specialist palliative care services
Based in a hospital, hospice or local clinic, specialist palliative care is provided by a team of professionals with training and expertise in support for life-shortening illness. In many cases, services can also be provided by home visit, or in a residential or nursing care home.
This type of care looks at the person’s needs as a whole. It includes symptom management, but also practical, social, spiritual and psychological support. The care ranges from clinical and counselling support to complementary therapy and financial guidance. Carers and close family are also included in the support.
Palliative care is usually free, but some services may charge, such as complementary therapies.
Find out more in our information sheet 3D – Hospice and palliative care
See our page on Planning ahead for future care for guidance on end of life decision making, including advance care planning.
This is short term alternative care that allows your regular carers to take a break. Although family and friends may be happy to give support, there may come a time when you need to involve professional help.
Depending on your needs and the availability of the service, respite care can be provided at home, in a hospital or hospice, in a residential or nursing care home or at a day care centre. A good time to ask about suitable respite care is during a needs assessment if you have MND or a carer’s assessment if you provide support. Contact your local authority in England and Wales about arranging an assessment, or your local health and social care trust in Northern Ireland.
There is normally a charge for respite care. You and your carer may receive help towards this, depending on the outcome of your assessments.
Carers may find our guide Caring and MND: support for you helpful, as this covers respite care and breaks for carers in more detail.
Residential and nursing care homes
MND can be a complex disease and there may come a time when you need consistent professional support. This may be more than can be realistically provided at home. Respite care can help for short periods, but in some cases residential care in a nursing care home may need to be considered.
Contact your local authority in England and Wales, or your local health and social care trust in Northern Ireland for more information. They can help assess your needs and provide guidance on how to select a suitable nursing care home. A health care professional may also need to be involved in the assessment.
You may have to contribute towards care in a residential home, although nursing care is usually funded. A financial assessment will be completed to work out how much you need to pay.
If you qualify for NHS continuing healthcare (see below in this list) all of your personal and medical care will be funded.
You can read inspection reports to see how a home is rated:
England: see the Care Quality Commission at: www.cqc.org.uk
Wales: see the Care Inspectorate Wales at: www.careinspectorate.wales
Northern Ireland: see the Regulation and Quality Improvement Authority at: www.rqia.org.uk
Emergency and urgent support
No matter how well you plan, or how much support you put in place, something unexpected may happen. It’s important to identify out-of-hours and emergency services so you feel prepared, then keep contact details to hand.
As care needs increase over time with MND, it’s also important to find out about urgent care cover if your main carer becomes unable to support for any reason.
Local services all work in slightly different ways, but you can ask about how to get urgent support when you have your needs assessed. Contact your local authority in England and Wales about arranging an assessment, or your local health and social care trust in Northern Ireland. They can provide guidance about local services and systems.
Emergency healthcare is free, but you may have to pay for professional care cover.
There are various ways to alert emergency teams about your needs with MND. See our Forms and Planning ahead sections on our information for people with or affected by MND page to find out more about the resources we produce.
Resources that can help you include the following:
At the moment, we are unable to send out physical resources due to current isolation measures, including our alert wristbands and cards. However, we have produced the following MND Alert to use on your mobile phone or print off at home. Try to have this alert with you at all times. If you do need emergency help, this will let medical staff know that you have MND and that oxygen may need to be used with caution.
You can download this MND Alert or copy the image below:
Understanding my needs: our write-on booklet to help you record your needs and personal background. This can help guide hospital and hospice staff, or care workers. This document can also be downloaded and completed on screen, then printed out.
MND Association Just in Case Kit: our box to hold medication to relieve sudden breathlessness or anxiety. It can usually be ordered from the MND Association by a GP, who will prescribe suitable medication to place in the box and discuss usage with you and your carer. The box is then kept at home ‘just in case’ and also holds medication that visiting medical or emergency professionals can access if needed. If we are unable to send out the boxes during the coronavirus isolation period, it's still possible to download the leaflets and your GP may be able to prescribe medication for you. GP's can contact our MND Connect helpline with queries.
Message in a bottle: a sticker on the fridge and inside your front door tells paramedics an alert bottle can be found in the fridge. This can contain essential personal and medical details to help them. Bottles are free of charge from your local chemist and you can find details through the Lions Club. Search for message in a bottle at: http://lionsclubs.co
MedicAlert: This registered charity provides an identification system for individuals with medical conditions and allergies. Usually in the form of a bracelet or necklet, which you purchase, the scheme is supported by a 24-hour emergency telephone service. You can find details at: www.medicalert.org.uk
Carer emergency card: a card carers can carry in case they are involved in an emergency themselves and unable to communicate. Usually linked to a registration service, the card alerts authorities that the person being supported by the carer will need assistance. Ask your local authority if they have a carer card scheme, or your local health and social care trust in Northern Ireland.
Important care documents: keep any important documents about advance care planning or advance decisions somewhere safe, but easily accessible in an emergency. It is not advisable to lock them away, which may make them difficult to get to in an emergency. Paramedics and medical teams need to see these documents if they are to respect the wishes of the individual. Find out more about planning for future care in our Planning ahead section on our information for people with or affected by MND page.
Telecare and telehealth: refers to systems in the home that help to monitor your well-being and alert professionals if something seems wrong. For example, if you have had a fall. There may be a charge for this equipment.
Care following a hospital stay
If you have been admitted to hospital for symptom control or emergency care, both your needs and those of your carer should be assessed before discharge. A care plan will then be provided, usually by adult social care services. Many hospitals have dedicated discharge teams who do this.
You have the right to ask when it will be carried out – it is important that you both receive adequate support.
There are no charges for medical care you may receive, but you may need to be financially assessed for any care services arranged.
Personal health budgets
In England, the NHS usually arranges healthcare services for people based on their needs. However, with MND or Kennedy’s disease, you may be able to get a personal health budget, which gives more choice and control over the healthcare services you access. This budget is planned and agreed between you and your local NHS team. There are different ways the budget can be managed.
You can use a personal health budget for secondary care support, such as physiotherapy or hydrotherapy, training to help you look after your health needs or treatment and equipment that meet the goals in your personalised care and support plan.
To find our more, see our Information sheet 10F - Personal health budgets
Support from other organisations
A wide variety of local, regional and national organisations may be able to offer guidance, information, support or funding. Some offer urgent care support or respite care, often through agencies.
We cannot endorse providers, but we do provide lists of suggested national organisations in most of our publications and on our Useful organisations page. We hope these help you begin your search. For local services, ask your local authority for guidance in England and Wales, or your local health and social care trust in Northern Ireland.
Our MND Connect helpline can also help guide you to suitable services to meet your needs.
The video below shows an example of the type of support that may be provided at a hospice. Please note this video is based at a hospice in Dorset. The support offered can vary across hospices, but is usually quite similar.
The video below is by the Professional Records Standards Body (PRSB). It shows how you can help those involved in your care provide appropriate support through sharing your health and care record. Ask your GP how you can access your personal health and care record.