Support for carers
Caring for someone with Prader-Willi Syndrome can be mentally, physically and emotionally challenging, no matter how much you love them.
If you are an unpaid carer, you are entitled to the practical and financial support listed below.
Have you had your carer's assessment?
If you’re over 18 and provide regular unpaid care for someone, you’re entitled to a carer’s assessment.
A carer's assessment looks at what support you need, rather than the person you care for.
There are lots of different types of support you could be entitled to, including:
- Practical help e.g. with cleaning or laundry
- Training to help you with your caring role, for example in moving and handling
- Equipment or alterations to your home
- Emotional support such as counselling
- Breaks from caring, such as respite care for the person you care for
- Advice about benefits
- Support to improve your wellbeing, such as access to exercise classes, social activities or adult education.
How do I request a carer's assessment?
If the person you care for has a social worker, they should do your carer's assessment alongside the needs assessment.
If you don't have a social worker, contact adult social services at your local council (or trust in Northern Ireland).
If you’re a carer for your child, contact the children with disabilities department at your local council (or trust in Northern Ireland).
If you have any difficulty requesting or accessing a carer's assessment, our support team can help you, please get in touch.
Our support services:
If you are struggling, our team can help you get the support you need.
We can help by:
- Helping you understand your rights
- Attending meetings
- Writing letters to professionals
- Helping you with forms and applications
- Signposting you to grants, benefits and help
- Listening and understanding when you need to talk to someone who understands PWS
Organisations and sources of support:
List of Services
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Carers UKCarers UK List Item 1
Carers UK provides information on carer's legal rights and a directory of financial and practical support available to carers.
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Carers Trust NetworkFind services near you List Item 2
The Carers Trust Network is a UK-wide network of local carer organisations. Use this to find services for carers in your local area.
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CarefreeCarefree List Item 3
This charity enables unpaid carers to take free breaks using avaliable hotel rooms.
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Family FundFamily Fund List Item 4
Family Fund provides grants to families on a low income for items they may not otherwise be able to afford. For example, family breaks, digital equiptment, white goods, clothing, bedding, furniture and play equiptment.
