Support for family members

Both MND and Kennedy’s disease bring change and it can feel as though the disease is always one step ahead. This can leave the person who has been diagnosed, and those close to them, experiencing a loss of control within their lives. It may feel bewildering, even when supported. With many different professionals involved, there are usually lots of new faces, appointments and discussions to manage.

Being well informed about possible symptoms, the impact on daily life, choices for treatment and access to support can be helpful. Not everyone feels ready for this immediately and you may need time to adjust to the diagnosis. However, understanding the likely challenges ahead enables better planning. If everyone involved, including family and close friends, are informed, it can help enormously.

“Everyone needs to face what’s happening together to feel prepared and supported.”Family member, affected by MND

Knowing what to expect won’t make the diagnosis feel any better, but it can make daily living a little easier to manage.

The following links may help:

If you know someone who has been recently diagnosed and you need introductory information, we have an information map Where can I find the information I need? which may be useful, which is also available in information sheet 1C. This introduces you to our resources, services at the MND Association and some of the key external organisations you may need for further guidance.

If you are new to caring, see our Caring and MND: quick guide (this guide is also available to listen to in audio format). If you need more detail, we also provide a comprehensive guide to help carers look after their own wellbeing, Caring and MND: support for you.

For more resources, see our  information for people with or affected by MND, which lists our publications for families, carers and children. This includes information for people with or affected by Kennedy’s disease, such as information sheet 2B – Kennedy’s disease.

See our services for more information about how we can help, or the drop down option on this page What support does the MND Association provide?

This family support page includes guidance about support for children and young people close to someone with MND or Kennedy’s, but is intended for adults. If you are aged 11 to 18 visit our hub for young people. We will also be introducing a hub for children aged 4 to 10 soon.

“Although we were a close family, we didn’t talk much about what was happening or what might happen in the future. I wish we had talked more because a lot of my worries would have been dealt with.” Young person, close to someone with MND

Our information resources can help to open discussions between family members and with professionals. Having a structure to follow can make it easier to tackle some of the bigger questions. Our publications often use questions as headings to prompt discussion, with suggestions to consider in the text that follows.

If you still find it hard to do, or particularly emotional, ask a health and social care professional you trust to guide more difficult conversations. This can be done at an appointment. Assistance from a relevant professional may help everyone to focus and enable you to ask questions as you go.

If the person with MND or Kennedy’s disease has any problems with speech and communication, complex or lengthy discussions can become more difficult. In a smaller number of MND cases, the way the person thinks and behaves may also be affected. Due to these possible changes, ask professionals for guidance as early as you can, or feel ready to do so. For example, it can help to ask about decision making on treatments and future care.

If you are worried about how to discuss what’s happening with younger members of the family, you may find it useful to read our guide Telling people about MND, which includes guidance on how communicate about MND with family, children, friends, colleagues and health or social care professionals. 

See the drop down section below What support is available for the family, including children?  for more details on how to support younger people.

“I would like more emotional support, perhaps involving all the family. I feel there is a tendency to try and ignore, or not deal with, the emotional impact of caring for a loved one with MND.” Family member, affected by MND

Your experience of being close to someone with MND or Kennedy’s disease will be personal to you. No one will have exactly the same challenges or responses, but you are not alone in your feelings. Many will be facing similar situations and a wide range of emotions. But where can you get support when it’s needed?

We provide information to help. See Section 7: Making sense of your feelings in our guide Caring and MND: support for you. This guidance can help you understand what to expect, identify emotions and think about ways to manage these if you begin to feel overwhelmed. We also provide a guide for people with or affected by MND, called Emotional and psychological support, which includes information about the different therapies on offer.

Members of the health and social care team supporting the person who has been diagnosed, can also help advise you. They may refer you, if wished, for specialist help if you experience persistent emotional distress and would like some help.

Our MND Connect helpline is here to listen if you need to talk with someone. Our helpline can guide you towards support that feels right for you, including support about Kennedy’s disease.

You may find it helpful to be put in touch with an Association visitor, where available. These trained volunteers can provide guidance and support at your home,  or by telephone or email. We also have local branches and groups, where you can meet other people affected by MND, who understand the changes you are dealing with. There are other useful organisations that offer support to carers and family members who support people with serious conditions.

You may hear the term ‘whole family approach’ used by social services. This is where a needs assessment looks at the impact of a condition or situation for the whole household. This may result in additional family support for younger members or dependents.

“I feel stretched all the time and guilty that I cannot be both a carer and the best mother I can be.” Carer, supporting a person with MND

The whole family approach can help ensure suitable services are arranged. This may reduce the pressure of care and enable the family to better face the challenges ahead as a team.

At some point, external support may be necessary, as care needs can increase rapidly with MND and over time with Kennedy’s disease.

“The difficulty for the family can sometimes be to know who to go to for what…often it is the first time the family has to cope with a serious illness and look after someone in the home.” Family member, affected by MND

Adult social services can provide a needs assessment for the person who has been diagnosed, or a carer’s assessment if you are providing support. If children or young people are involved with support or care in any way, they should also be offered a young carers needs assessment.

These assessments work out your needs, agree which support services could assist and help you plan for emergencies. To arrange an assessment, contact your local authority in England or Wales, or your local health and social care trust in Northern Ireland.

Being aware of your rights can help you get an assessment, to access the support and information you may need. We provide information sheet 10B - What is social care? to help explain.

During the assessment (or when making a claim for relevant benefits), always provide lots of detail about how long things take, such as helping the person with the condition to complete tasks. This is more likely to result in appropriate support.

The assessment will lead to a support plan, which will be agreed with you. You may have to pay towards any services arranged, but a financial assessment is used to work out how much you pay and how much your local authority may pay.

We provide information resources to help, or look on www.gov.uk for England and Wales, or www.nidirect.gov.uk for Northern Ireland. See also our web page on benefits and financial support.

You may find our page on how to get the right treatment and care helpful: How can I check if my treatment and care are appropriate? This explains how to use the NICE guideline on motor neurone disease, which can help both people with MND and their carers to get better outcomes.

For more information, see:

• What you should expect from your care
• 10A – Benefits and entitlements
• 10B - What is social care?
• 10C - Disabled Facilities Grants and home accessibility
• 10D – NHS continuing healthcare
• 10E – Work and MND
• 10F - Personal health budgets
• 10G – Support for families with children
• Caring and MND: support for you
• Caring and MND: quick guide - this guide is also available in audio format

Adult social care services look to the needs of the whole family, especially when children and young people are involved. Following assessment of needs (see drop down option above), a range of support and information may be provided for the person who has been diagnosed, their carer and any children or young people in the household. This help could include:

• care worker support for household tasks or personal care
• help with carer breaks or respite care
• support for children and young people
• guidance on urgent or emergency care
• assistance with transport issues
• how to access benefits and entitlements.

It is worth finding out what’s available. You may have to pay towards any agreed or arranged services, but a financial assessment will work out how much you need to contribute.

See our information resources page, which features a drop down option listing our publications for families, carers and children. Information sheets 10A to 10G provide guidance on benefits and other areas of financial support, including Information sheet 10G: Support for families with children. You will also find resources designed for children and young people on this page.

Younger family members aged 11 to 18 can visit our hub for young people. We will also be introducing a hub for children aged 4 to 10 soon.

“The fact that your helpline can be contacted by young people as well as adults is the best part. You’re here for us too.” Young person, close to someone with MND

We also offer a limited amount of family counselling to support children and young people affected by MND, or Kennedy’s disease. If you would like to find out more, contact cyp@mndassociation.org

Health and social care professionals who support a person with MND or Kennedy’s disease often provide guidance and support for carers and close family too. For example, specialist palliative care services focus on quality of life for people with a life-shortening illness and this includes support for immediate family.

“Some professional support, like a nurse to tell you what was going on, would help.”Young person, close to someone with MND

With MND, building a relationship with either a specialist palliative team or a hospice team is valuable, as they can offer practical, emotional and spiritual support, as well as symptom control, throughout the course of the disease. If you have MND, ask your GP about referral to palliative services as soon as you can following diagnosis. There may be a waiting list, but the earlier you and your family can be introduced, the more benefit you will achieve.

See our useful organisations and internet sites page for examples of relevant services and providers.

We provide a wide range of services for people with and affected by MND and Kennedy’s disease, including our MND Connect helpline, regional support, Association visitors, support grants and equipment loan, Communication Aids Service and membership.

See the drop-down option below about contacting our helpline for more details about how it can help young people too.

“The MND Association is there at the end of a phone or email…and with them I’m a member of a community with similar problems; we can provide each other with help and offer solutions.” Family member, supporting a person with MND

Our support grants include grants for carers, children and young people close to someone with MND or Kennedy’s disease, as well as for the person who has been diagnosed.

Our Online Forum provides a safe place to share experience for people with or affected by MND who are aged 18 or over.

Younger family members can find information resources and support on our hub for children and young people, which includes a page for parents and guardians.

We also offer a limited amount of family counselling to support children and young people affected by MND, or Kennedy’s disease. If you would like to find out more, contact cyp@mndassociation.org

See our useful organisations and internet sites page for examples of other services and providers.

See our helpline contact details at the bottom of this page or find out more about MND Connect on their own page. The team can provide support, information, and guidance on our services and wider support. They can also listen if you just need to talk. The helpline also assists health and social care professionals who provide support to families affected by MND.

The team also operate our helpline for young people:

Helpline: 0808 802 6262
Email: youngconnect@mndassociation.org

"The fact that your helpline can be contacted by young people as well as adults is the best part. You're here for us too." Young carer

We also offer a limited amount of family counselling to support children and young people affected by MND, or Kennedy’s disease. If you would like to find out more, contact cyp@mndassociation.org

For 24-hour emotional support, up to the age of 19, you can also contact:

Helpline: 0800 1111
Website: www.childline.org.uk