Our well-being, and any decline in that which results in the need for care, is something that occupies most people’s minds at some point, and with increasing frequency diseases like dementia are pervading into previously happy families, bringing with them huge emotional and financial costs and, unlike in the political world, decisions that cannot be avoided.
No one is denying that care is hugely expensive. It is labour intensive by its very nature, needs to be extremely mobile and flexible when helping to keep people in their own homes (which undoubtedly is what the vast majority of people want, no matter what their age or needs) and involves huge overheads and logistical problems if someone does eventually need residential care.
It is also something people really struggle to plan for, mostly because it is impossible to predict if and when illness may strike and if it does, working out what you may have to pay to receive care as there is currently no universal standard on accessing care (all 152 councils in England can set their own eligibility criteria).
Last year it was recommended that a cap should be introduced so that people know that they will never have to pay more than £35,000 in their lifetime for care. Naturally this raised expectations that finally, after so long in the wilderness, social care would become a transparent system whereby you knew the maximum you would have to pay should you need these services, and families would not be in for a nasty surprise.
Typically, however, because politicians need to look at ‘cheaper options’ there is still no concrete plan to move forward with legislation that is craved by people whose lives are affected by this every single day. I have friends whose parents were forced to sell their homes to fund care, losing family homes and inheritance to pay for something that throughout their working lives their parents had believed they had already paid for should the need for care arise.
I accept that the state has burdens on its resources that outstrip what is available to spend, and care with its high cost, complexities, and the growing demands of an aging population is a massive drain on budgets already, just by funding people who do not have any assets to pay for their care. Ultimately, however, this is about long-term strategy, effectively spending to save. Without a clear, fair and workable social care system, healthcare costs spiral. The huge injustice of the blatantly two-tier system we have now, right down to the differences in residential fees being paid by privately funded and publically funded people, has to change, and fast. If people are going to have to contribute to their care costs, they should know what their maximum liability will be, otherwise old-age and ill-health become like playing roulette.
I also feel, probably because of my personal experiences, that there is nothing more important to fund than the care of our most vulnerable people. Either England is a compassionate society or it isn’t, and while our politicians decide whether it is, people can spend weeks languishing in acute hospital beds, costing the NHS a fortune because they do not have the right care package, or being sent home with inappropriate or non-existent care packages that mean they will be back in the very same hospital bed within a few days or weeks.
So what have the government offered people in England? A belief that capping care costs is the ‘right basis’ for change, but no commitment on what the change will be. A deferred loan scheme for people who need to pay for residential care, meaning that the cost of care can be taken from their estate after their death. However the state will charge interest on this (currently, where this scheme is available, interest is not charged). A national standard for getting access to care, ending the postcode lottery where councils set their own criteria for funding (although if your council happens to be more generous than others you may be in for a shock), and a pledge that you will be able to move your care package to another local authority should you wish to, without having to be re-assessed.
There is also a proposal to pilot a scheme to make personal care at the end-of-life free, to reduce the burden on hospitals. On the face of it this is an excellent idea, but it has to be borne in mind that if people are not able to have the care they need in the months or years preceding this time, the end of their life may come considerably sooner than it should do, which in any compassionate society is a scandal.
The glaring omission comes in the lack of a real framework for change, and on the key issue of capping fees, we are no further towards a resolution than we were before the Government’s announcement. In fact, potentially there may be no concrete decision until the next spending review, so it is possible that legislation is years away. The government say they want people to, “Get the care and support that they need to be safe and to live well so they don't reach a crisis point,” but by delaying this decision for such a long time, many people will wonder if those in power really care about their well-being at all.
Constantly fighting the system, trying to work out what you are entitled to, at the same time as dealing with the trauma and emotional upheaval of a loved one with a disability or illness, is exhausting for families at the very moment when they want to spend quality time with their loved ones, and particularly in the case of terminal diseases like dementia, make the most of every single day.
The plan to cap care costs may be on hold, but sadly the need for care will never be on hold. The politicians may want to delay their decision, but every day people across England are faced with health and social care decisions that cannot be delayed. Some of us do not get to walk away and think about what we are going to do for a few years.
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