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Useful links

Here is a selection of links to helpful organisations, resources and information. Do let me know if you feel something should be added.

Parkinson's information and support

Benefits and financial information

  • Carers' Allowance - if you are providing 35 hours of care or more (dressing, medication supervision, emotional support, cooking, shopping, laundry, etc) it is worth checking to see if you qualify for Carers' Allowance.

  • There is a helpful overview of a range of benefits, for you and for your PWP: https://www.elder.org/elderly-benefits/

  • DWP (Department of Work and Pensions) A-Z of disability benefits, including Carers' Allowance and reporting changes (such as respite); also links to PiP, ESA and DLA

  • Did you know you could have free companion travel with your PWP's National Entitlement Card where it shows the +1 logo, or if they have proof of various benefit entitlements: https://www.transport.gov.scot/concessionary-travel/60plus-or-disabled/#37401

  • Free personal care (regardless of income) - questions and answers: https://www.gov.scot/publications/free-personal-nursing-care-qa/

  • Motability scheme - if your PWP receives the higher level of PiP or DLA for mobility, then you might want to consider getting a car (or a wheelchair) through this scheme in return for that portion of their benefit: https://www.motability.co.uk

  • Benefits and sources of support for those living with dementia - a comprehensive guide relevant to carers generally: https://www.dementiauk.org/get-support/diagnosis-and-next-steps/sources-of-support-and-advice/

  • Ayrshire Independent Living Network - experts in the use of the Self-Directed Support grant. "Once Health & Social Care have advised you about the assistance you can have, we’re just a call away for free information, advice and support about SDS."It might be that hiring a personal assistant is the best option to help the person you care for stay as independent as possible, and AILN can help with all the financial practicalities: https://www.ailn.org

Equipment for daily living

There is a lot of kit that can help make caring easier - cups that make spillage less likely, seat pads that make it easier for your PWP to get in and our of the car, special bedding, grab handles, etc. Check with your NHS OT service before you buy larger pieces - you may be able to have equipment on loan.

Respite and home care

Organisations you can contact to discuss respite care or who might be able to make arrangements to step in in an emergency:

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