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Support for carers of people with MND

As a carer of someone with MND, you can access help from care services as care needs increase.

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What is this service?

Support for carers

Our specialists are able to support you through your journey with MND. This ranges from information on MND or Kennedy's disease, to wellbeing activities and advice on benefits you can claim.

See our information resources for our full information provision, including publications for carers and people with MND. This includes our summary if you are new to caring, Caring and MND: quick guide (also available in audio format) and our comprehensive guide to help carers look after their own wellbeing, Caring and MND: support for you.

Your rights as a carer

In brief, you have the right to:

  • have your views taken into consideration by the local social services/adult care services when they are assessing the needs of the person you support

  • an assessment of your needs as a carer

  • have your interests, work, family life and life ‘outside of caring’ taken into account

  • take a break from caring

  • benefits and financial support, where applicable

  • request flexible working from your employer.

You can find out more detail about carers’ rights in England, Wales or Northern Ireland in Section 3: Your rights as a carer from our comprehensive guide, Caring and MND: support for you.

Wellbeing activities

The following links may also help you find activities or techniques to support your wellbeing:

For more information on support for carers, please visit https://www.mndassociation.org/support-and-information/for-carers/support-for-carers/

Support for family members

We understand that it can take time to adjust when someone close is diagnosed with MND or Kennedy’s disease. It usually means facing difficult conversations, and sharing challenging emotions with family and friends. However, understanding each other’s needs can help everyone feel more supported, and work better as a team.

For more information on support for family members, please visit https://www.mndassociation.org/support-and-information/for-carers/support-for-family-members/

Bereavement support

If you have been bereaved as a result of motor neurone disease (MND) or Kennedy’s disease, we may be able to help you seek emotional and practical support in a way that feels right for you.

Our MND Connect helpline team can help you with information, support, a chance to talk, and guidance about our services and external services to suit your needs. Contact the helpline by: 0808 802 6262 or mndconnect@mndassociation.org.

We work in partnership with various organisations, including those that specialise in bereavement support. 

For more information on bereavement support, please visit https://www.mndassociation.org/support-and-information/for-carers/bereavement-support/

What we offer?

  • Information and advice on MND
  • Carer wellbeing activities
  • Family support meetings
  • Bereavement support
  • MND Connect helpline
  • Grants for carers
  • Carer events

Good to know

What people say

It’s about finding solutions to problems to enable life to continue as positively and optimistically as possible.” - Family member, affected by MND

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