6 November 2019

Call for social care for people with neurological conditions

Petition on social care reform

The Neurological Alliance has launched a joint campaign to raise the profile of people with neurological conditions in the conversation around social care. Access to care for working age people with chronic conditions and disabilities must be prioritised. Failing this, the recent public discussion about ending the care crisis will come to nothing. Current proposals relating to care for older people, funding increases, and driving recruitment in social care are essential but do not go far enough.


So, together with Change.org and Epilepsy Action, we have launched a petition. We are calling on Government, local authorities, and all political parties to commit to prioritising working age people with neurological conditions in their plans for social care.


Sign the petition


Nikkita’s story

The campaign centres on Nikkita Otu, who has unique care needs due to living with severe epilepsy. Nikkita’s seizures are unpredictable and can occur as many as 30 times a day. She is unable to be alone without her life being at risk. So, her father is her unpaid carer, voluntarily staying on hand to help her manage day to day life. Nikkita herself is a mother to her 9-year-old son. Yet she was given only two options by her local authority when they assessed her care needs. She could either have a carer for just five minutes three times a day or be admitted into a care home whilst her son goes into foster care. Clearly, these are not really options at all. Sadly, Nikkita and her family are amongst the many people with neurological conditions and their families who are let down by the system, as it stands.


Read more about Nikkita’s story in her guest blog for us, and support the campaign by signing the petition here.


Working age people neglected

This year has seen the social care crisis high on the political agenda. Boris Johnson promised as Prime Minister to fix the crisis. An additional £1.5 billion in council funding for social care was announced. Labour has pledged to create a National Care Service, with care free at the point of delivery for older people, if they get into power. And there has been a social care recruitment drive. Yet, working age people with neurological conditions continue to be neglected in the current system and in plans to reform it.


We know from our Neurological Patient Experience Survey that social care is not meeting people’s needs. Our 2018/19 survey revealed that over a third (38%) of respondents disagreed with the statement: ‘Overall, the social care I have received meets my needs’. The message behind our campaign is that this is not acceptable. People of any age with neurological conditions ought to be treated with equal dignity as older people. They must be given equal access to the care that they need. Government and local authorities must act now to achieve this.