A charity has called for charges for non-residential social care for people with Parkinson’s and other long term conditions to be scrapped

A charity has said moves must be made to reduce inequalities in social care for those with long term conditions.

Charges for non-residential social care for people with Parkinson’s and other long term conditions should be scrapped, Parkinson’s UK Scotland has said.

The charity says there is a postcode lottery which means that local councils decide what to charge disabled people for the extra support they need to stay well and live independently. While personal care is free, any support that falls outside the tight legal definition of ‘personal’ can be charged for. Despite national guidelines, different rates are levied in different areas. Some support packages are free in some areas, and subject to hefty charges in others.

There are around 12,400 people with Parkinson’s in Scotland, and Parkinson’s UK Scotland estimates that around half of these could benefit from social care support. The charity says that the cost of home-care packages means that some go without the support they need, while others are facing huge bills for their care, and some cannot tell how their charges have been calculated.

Fiona Purchase from Carluke in South Lanarkshire has raised her situation with Parkinson’s UK Scotland. Fiona’s husband Martin has been living with Parkinson’s for 24 years after being diagnosed at the age of 41.

In 2015, after 20 years of supporting Martin themselves, the family asked South Lanarkshire Council if any help was available. Martin was assessed as being entitled to self-directed support to provide assistance while Fiona was out at work. The following year, Fiona’s father died and left her a small inheritance. The council changed its charging policies, and early in 2017 Martin was told that instead of receiving a grant he would now have to pay £128.77 per week towards his care.

Despite the inheritance being small, and in Fiona’s personal bank account, it was automatically counted as income by the council. After an arduous appeal process, the amount was eventually reduced to a more manageable £23.17 per week.

In 2019, Martin turned 65 and the council re-assessed his care charges again. Astonishingly, the weekly bill for the identical package more than tripled to £82.75. Again, after an appeal and intervention from their local MSP, the amount payable by Martin was reduced - this time to £65.95 per week.

Fiona turns 60 this year, and is considering retirement. But South Lanarkshire’s policy on charging means that Fiona is concerned that her pension and the lump sum she’s due to receive on retirement will, like her modest inheritance, be targeted by the council to pay for Martin’s care.

Fiona works for a neighbouring local authority, which does not charge for care in this way, and self-directed support packages like Martin’s are not subject to charging. She said: “I’m afraid to retire. My pension lump sum - money invested to support me in my older age - will be gobbled up by South Lanarkshire’s charges. Yet if I lived three miles up the road in the authority where I work, there would be no charges whatsoever. This just seems incredibly unfair.”

Annie Macleod, director of Parkinson’s UK Scotland, said: “The system being used today essentially creates varying rates of local taxes on disability. Some councils choose not to charge, but most do. It is fundamentally unjust, and extremely stressful for families who are seeing their safety nets appropriated by councils to pay for essential care. In the upcoming budget, the Scottish Government should intervene now and expedite a national policy of free non-residential social care, as the First Minister promised last year. The sums of money currently charged can be life-changing, and household budgets are severely impacted by the different policies being implemented across Scotland. The system also punishes people like Martin and Fiona for staying together as a couple. If they were apart then Fiona’s liabilities would end.

“The number of people living with Parkinson’s will increase by about a fifth in the next decade, which means we expect more and more people to be penalised by care charges simply because of where they live. This is unacceptable, and Parkinson’s UK Scotland calls on the Scottish Government to work with local authorities to scrap charges now. People like Fiona and Martin simply can’t wait until after the next Scottish parliamentary election.”