Imagine being afraid to retire because your hard-earned pension and lump sum might be eaten up by the costs of your partner’s care. Imagine facing years of older age in poverty because the money you’d saved to cushion your later years has already been spent on providing care for someone else. Imagine these punishing taxes on your partner’s disability only being payable just because of where you live.

We celebrate that personal care in Scotland is free, but any support that falls outside the unreasonably tight definition of ‘personal care’ can be charged for. And while national guidelines on charging do exist, significantly varying rates are levied in each of our 32 local authorities. Some support packages are free in some areas, and subject to hefty charges in others. The systems used to determine charges are also horrendously complex, making it extremely difficult for families and individuals to plan ahead.

In Scotland there are around 12,400 people with Parkinson’s, the second most common progressive neurological condition after Alzheimers, and the fastest growing. Parkinson’s UK Scotland estimates that approximately half of these people could benefit from social care support. However, the cost of home-care packages and their complexity means that many go without the support they need. Some face huge bills for their care, and most cannot tell how their charges have been, or are likely to be, calculated.

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That’s the reality of the current social care charging regime in Scotland today. And these are not worst case scenarios, they are real life challenges for far too many families affected by Parkinson’s and other long term health conditions.

Take the experience of the Purchase family from Carluke in South Lanarkshire. Their story will resonate with many.

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 and with his symptoms deteriorating, wife Fiona asked South Lanarkshire Council if any social care 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. At the same time, 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 counted as family income by the council. After an arduous appeal process, the cost of care was eventually reduced to a more manageable £23.17 per week.

In 2019, Martin turned 65 and the council re-assessed Martin’s care charges again. Astonishingly, the weekly bill for the identical package more than tripled to £82.75. Again, after an appeal, the charges were 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 will, like her modest inheritance, be targeted by the council to pay for Martin’s care. Repeated questions to the council on the impact of her retiring have gone unanswered, leaving Fiona and Martin in limbo.

What makes it even worse is that Fiona works for a neighbouring local authority. And her employer is one of the few that does not charge for care in this way. Self-directed support packages like Martin’s are not subject to charging. The Purchases are being severely financially punished for living three miles on the wrong side of the boundary. By any measure this is unfair, unreasonable and unacceptable.

Radical change is required and charges for non-residential social care for people with Parkinson’s and other long term conditions should be scrapped. This would end the current postcode lottery that is the result of allowing local councils to decide what to charge disabled people for the extra support they need to stay well and live independently. Being cared for at home is at the heart of the drive to integrate health and social care and it is a false economy to penalise people for trying to stay at home.

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Levying local taxes on disability is fundamentally unjust. It is also 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 expedite a national policy of free non-residential social care. The First Minister has already signalled her intention to move towards free non-residential care at some stage in the future but families cannot and should not have to wait. The sums of money involved can be life-changing for many, and household budgets are severely impacted by the different policies being implemented across Scotland. The system also punishes couples like Martin and Fiona for staying together. If they were apart, then Fiona’s liabilities would end.

Every week 30 people in Scotland are told they have Parkinson's and the number of people living with the condition will increase by about a fifth in the next decade. This means more and more people are set to be penalised by care charges simply because of where they live. This is unacceptable, and I call on the Scottish Government to work with local authorities to scrap charges now.

Annie Macleod is Parkinson’s UK Scotland Director