Personal care, provided by local authorities for people who need it at home, can include help with washing, feeding, dressing, going to the toilet and getting in and out of bed.

Since 2002, people over 65 years in Scotland have received free personal care. People under 65 years are financially assessed to ascertain whether or not they can make a contribution.

However, COSLA guidance stated that people who are terminally ill could not be charged for personal care. Yet, MND Scotland discovered that some local authorities charged people with MND for personal care, when they should be exempt. This resulted in a postcode lottery of personal care charging for people with MND across Scotland. 

What we did

We launched a campaign calling for:

• local authority guidance, to include that a doctor’s letter or DS1500* should be accepted as evidence that a person is terminally ill
• the Scottish Government to publicly endorse the guidance and consider updating legislation to include those who are terminally ill
• local authorities to be fully transparent in their charging policies and have their full policy online

* A DS1500 is a form, signed by a medical professional, that the Department for Work and Pensions (DWP) use to fast track terminally ill people into the benefits system.

We also asked our supporters to contact their local councillors about the situation and write to their MSP to find out what the Scottish Government was doing about it.

What happened?

MND Scotland worked with COSLA to ensure that guidance documents for local authorities were updated to state that a doctor’s letter or DS1500 should be accepted as evidence that a person is terminally ill.

Whilst the majority of councils follow the new guidance, others have dragged their heels, meaning some people with MND still have to challenge their council to access the free care they are entitled to.  MND Scotland therefore included the need for legislation in its 2016 Scottish Parliament elections manifesto.