23 November 2023 News

Support MND Carers

Carers of people living with motor neurone disease (MND) across England, Wales and Northern Ireland are failing to get the support they need and deserve from their local authorities, according to a new report by the MND Association.  

Released on Carers’ Rights Day, the report lays bare the difficulties local authorities are facing delivering carers’ assessments and their lack of awareness of the number of carers in their area.  

State of Carers’ Assessments in the UK 2023 uses insight from Freedom of Information requests to all upper tier local authorities in England and Wales, and Health and Social Care Trusts in Northern Ireland to assess the ability of local authorities to deliver carers’ assessments. These important assessments are how carers can access vital assistance with their caring responsibilities including respite, and financial and wider support. 

Deborah cares for her husband Trevor, who is living with MND. Deborah hasn’t received a carer’s assessment despite approaching her local authority for one.

It was once suggested that I call the local authority about a carer’s assessment but, when we spoke to them, they said they were terribly busy and asked whether I was struggling or not. This made me feel like they hadn’t really got time for us, so we didn’t pursue it any further.

Deborah, who cares for her husband Trevor who is living with MND

The report reveals local authorities are unaware of most of their carer populations, with almost one-third of local authorities (31%) not holding a register of carers in its area. This means that local authorities are only identifying between 6-13% (636,373) of carers in their local area, based on Census and Carers UK figures. Without understanding of how many carers there are in their areas, local authorities will not be able to put in place effective support for those that need it.  will not be able to put in place effective support for those that need it.  

In addition to problems with identifying carers, the report also details the long waits people are having while waiting for a carer’s assessment. Over the last five years the average wait time between requesting an assessment and receiving one has been over six weeks – too long in the context of a disease like MND where needs can change dramatically over a short period. There is also a postcode lottery for how quickly people will receive an assessment, ranging from weeks to shockingly over a whole year depending on where people live.

Finally, the report shines a light on where performance is below what is required for people with MND:

71% of local authorities do not provide routine reassessment for people with severe progressive diseases like MND to ensure that the level of support can change as their needs do

82% of local authorities do not have fast-track routes to assessment in place to account for the progressive and fast changing nature of MND symptoms.

85% of local authorities do not have ringfenced budgets for carers’ assessments which would ensure guaranteed funding for these assessments. 

Unpaid carers make an enormous contribution to the care of people living with MND and other conditions. Yet as this report makes clear, too many carers are left unidentified and unsupported by local services.

Those who provide care to the most vulnerable in society must not be left without support. Carers’ assessments are the ticket to further support, so local authorities need to do better to identify carers and facilitate timely access to an assessment. Without improvements to the system carers will continue to be forgotten and left to cope alone. We are clear that local authorities must do better and ensure the needs of carers are met.  

These findings have given us a much clearer insight into the issues local authorities are having delivering carers assessments. Because of this we will now be able to engage locally on how we can improve these and nationally apply pressure through our Support MND Carers campaign.

Alex Massey, Head of Campaigning, Policy and Public Affairs at the MND Association