Looking after someone with Kennedys Disease can be challenging as the disease becomes more advanced. There is a significant amount of help available both through the NHS and Motor Neurone Disease Association (MNDA) for carers. We would strongly encourage carers to engage with their GP and with the MNDA support groups if they find they are being overwhelmed. 

You have the right to ask for a carer’s assessment whether you live with the person you support. This applies whether you provide full-time or part-time care or combine care with paid work. An assessment can help work out the support you may need 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’ considered.
• take a break from caring.
• benefits and financial support, where applicable.
• request flexible working from your employer.

Your circumstances, income, and the number of hours you provide care may all affect how you qualify for support. Your carer’s assessment will help work out if you qualify (known as having ‘eligible needs’).

As a carer, you may be able to get help with:

• household tasks or gardening
• a mobile phone or computer, where it is not possible to access computer services elsewhere.
• essential transport costs, such as taxi fares, driving lessons, or car repairs.
• help to improve your wellbeing, such as membership to a gym or hobby club.

The person you support can also have a needs assessment. This can lead to assistance that may also help you as a carer, such as:

• respite or replacement care so you can take a break.
• a care worker to help provide personal care at home.
• laundry services or meals delivered at home.
• changes to the home to make it more suitable, or equipment such as a hoist or grab rail.
• assistance with travel to appointments or a day centre.

If you or the person with Kennedy’s disease qualify for support, you will each receive an individual support plan with the agreed services outlined, and the cost. A financial assessment will work out how much you need to pay towards the cost and how much will be paid by your local authority – or health and social care trust in Northern Ireland.

Services can be arranged for you, or you can decide to accept direct payments, where you select and arrange services of your own choosing. If you receive direct payments, you are responsible for this funding.

You may also find it helpful to register as a carer with your GP, as this can lead to a range of appropriate support. This could include linking into both national and local services, or schemes that focus on carers.

Please click here to view a presentation from our 2024 International Conference from a Carer.