“I am worried sick about these charges and am falling into a depression myself.”
Just one of the responses to a consultation on extending free personal care to people under-65 with debilitating conditions such as dementia.
Maureen’s words bring home the reality for far too many people. She says she has been forced to give up work to look after her husband because of the high cost of someone else doing it but says that without wages she can’t afford the upkeep of specialist equipment including a bed, toilet and mobility scooter.
Isn’t it bizarre that almost 70 years after the creation of the National Health Service, we have come to expect that medical care will be free at the point of need funded through national taxation yet social care is increasingly paid for by charging individuals and families affected.
77,000 people aged 65 and over, who suffer from illnesses such as dementia and Parkinson’s, benefit from free personal care but many others who deserve support lose out. The issue has been championed by Amanda Kopel, whose late husband, former Dundee United footballer Frank Kopel, suffered from dementia. Frank was eligible for just 19 days of free personal care before his death in April 2014, despite living with the illness for nearly six years. His family paid around £300 a week for him to be cared for at home following his diagnosis with dementia aged 59.
It’s one example of many and shows we have work to do if we truly believe we are a caring, compassionate society. Care must be provided because of an individual’s need, not because of their date of birth.
In April this year, I led a Holyrood debate calling for care charges to be eliminated entirely and for further investment in our social care sector. Sadly, SNP MSPs voted to amend my motion, removing the commitment to fund social care by progressive taxation and do away with care charges. The amended motion instead contained a much weaker call to be “flexible” in the “withdrawal of charges.”
High quality social care should be funded through progressive taxation. The Scottish Parliament has the ability to reform both local taxation and income tax so we can raise more funds in a fairer way.
Not only do we need to abolish punitive social care charges, we must make sure people have all the financial support they are entitled to. For example, clinicians and money advice workers are concerned that large numbers of people who are eligible for Disability Living Allowance do not claim it. That’s why Greens have been campaigning for everyone to have a right to independent advice and assistance to help them maximise their incomes.
We must also address recruitment and retention challenges. In many parts of Scotland, local authorities and other social care providers struggle to employ the staff they need – a situation being made harder by the Tories’ reckless Brexit and stubborn refusal to allow Scotland to decide its own immigration needs. Paying a Living Wage Plus of £9.20 an hour would also help persuade social care staff to stay in the profession.
Underlining the challenges that we face, a survey this week showed that one in five unpaid carers in Scotland has not had a day's break in five years. Charity Carers UK found carers reporting a deterioration in their health, both mental and physical, and that breaks were the top factor able to make a difference.
The main reason for not being able to get away was the lack of availability of the care needed. Cost is also a big barrier, and many carers admit they don’t know how to request a break. Many carers report a reduction in the amount of support offered by social work services.
Given our ageing population, it’s no surprise that more of us are stepping in to provide care and support to loved ones, for more hours every week. But if we’re not getting breaks, we can reach breaking point.
Scotland’s 759,000 carers provide care worth over £10 billion a year. We ignore this valuable contribution at our peril. It’s clear that we need more funding for carers' breaks and for social care services. This year Green MSPs negotiated with the Scottish Government to put an extra £160 million into council budgets so they could invest in local services such as social care. We must be prepared to go further.
The Scottish Government is carrying out a feasibility study into extending free personal care and interested members of the public can feed their opinions into it until this Sunday. The study is expected to be published later this summer.
Holyrood has a chance to be bold, and ensure nobody faces financial hardship due to the care they need or the care they give.
This article first appeared in the National