Social care has become a totemic issue in this general election. All parties have now pledged to introduce a lifetime cap on the amount of money an individual will have to pay. This is good news for the majority of people in receipt of social care – those who pay the partial or full cost of their care needs. These people should be able to purchase an insurance product that would guard them against these high costs.
However, that still leaves the question of who is eligible for state support. The amount of money that someone can retain without having to pay for care has been hotly debated, but what about the other criteria that people have to fulfil: the needs assessment.
Over the past few years, budget cuts have forced councils to restrict their services only to those who have the most acute needs. There are people who already have social care needs, who would qualify for support under the financial assessment, but who are left feeling as though their care needs have to deteriorate until they will receive support. These groups need to be covered by whatever 'long-term reform' the next government offers, otherwise it will only be a partial solution.
This includes people like John, who has multiple sclerosis (MS) and relies on an informal carer because he no longer qualifies for council support. As far as his condition has allowed, he has maintained his independence by volunteering and making sure, in his words, he ‘gives back’. However, his future looks uncertain. The state won’t step in until his condition worsens and, in the meantime, he will put in place his own preventative care measures. Here is his story.
John was diagnosed with primary progressive multiple sclerosis in 1996. His symptoms came on very quickly and he was admitted to hospital. On his discharge, the hospital and local government had lined up several assessments. What he remembers most about this time was his interaction with a social worker who spent three hours “just talking to me, getting to understand me, my personality, what was important to me”. They agreed that he needed help with domestic tasks – housework, ironing, preparation of meals – and six hours of homecare per week was put in place. After a financial assessment, he was asked to contribute around £2 per week towards the cost.
"I felt good that I was contributing something and for a number of years it worked very well."
However, after nine years and a temporary change in his circumstances, he was reassessed by the council and asked to contribute £60 per week. “It was a massive jump and there was no way I could pay it.” John vividly remembers the impact on his mental health.
"Unfortunately I got myself in a state, I was waking up at night gasping for breath and really got in a bad way. Reluctantly I put a stop to my own care package just to take the pressure off."
He decided that cancelling his care package was worth the potential risk to his independence. He also thought that if his situation deteriorated significantly over time, he could ask to be reassessed. However, as a result of cuts to funding, John’s local authority changed their eligibility criteria from those with 'moderate' needs, to those with 'substantial' and eventually 'critical' needs. He knows that even if he could afford to pay for the cost of care now, he wouldn’t be eligible.
He now receives a couple of hours of informal support a week from an ex-carer he happened to bump into. While this support has been invaluable to date, he knows that it isn’t a secure situation.
“My worry is that she is getting older and there will come a time when she’ll no longer be able to help me. What am I going to do then? […] The way things are going, it doesn’t look like I’m going to get support from the local authority until such time as I physically can’t wash and dress myself.”
For John, “giving something back” and keeping active have been principles that have guided him throughout this period of time. He volunteered for a few years as a director of his local Healthwatch and was also the chair of his local MS Society group for a while. This makes the lack of social care support even more frustrating.
“I really feel I’ve more than done my part to meet my side of the bargain.”
He knows the situation is complicated and that finding political consensus is difficult. However, his message to politicians reminds us of the urgency of the situation. After numerous commissions and consultations, the time for taking a decision and addressing the fundamental flaws in our social care system is now.
“You already have a clear picture of where the shortfalls are and what needs to change, this all boils down to how is it going to be paid for. Stop burying your heads in the sand. It’s as simple as that because in the meantime, people are suffering."
Holder H (2017) 'Let’s talk about eligibility'. Nuffield Trust comment, 26 May 2017. https://www.nuffieldtrust.org.uk/news-item/let-s-talk-about-eligibility