Dr Lin Berwick has high support needs, which up till now have been met by the use of 24/7 home care. But following the introduction of the National Living Wage in April this year she’s been alarmed to discover that her care package is unravelling.
Let me make it absolutely clear, I have always tried to do the correct thing by my carers, and naturally if they are entitled to the minimum wage, then they should receive it, and I do not expect that I should be exempt from the cost of all this, indeed I have contributed a great deal of money over the years. Last year I contributed £85 a week towards my care, before then I was paying £650 a week out of my own pocket for a second live-in carer, to enable me to work and constantly have someone here. I now cannot afford that luxury. The advent of the new National Living Wage of £7.20 per hour has had far-reaching consequences for the care industry, more to the point, the care industry has not caught up with the issues and indeed, is in the dark ages, hoping that the problem will go away.
Thankfully those working in care, whose hourly rate was appallingly low, and who had little recognition for all their efforts, have now got some change for the better.
However, for people such as myself, who require full-time live-in care, the consequences are dire, pushing the fee from £735 per week to £1,509 inclusive of holiday pay, sickness benefit, maternity benefit, employers national insurance and public liability insurance etc.
All this came into being, because HMRC told my carers that they could no longer be self-employed under the new rules, and they would not be able to be paid a lesser rate for the night time care support as they would not be able to leave me unattended at night.
I contacted social services asking where this leaves me. Amazingly, no one knew what I was talking about. In the end they decided to re-assess my care package to see if the cost could be brought down that way.
There then ensued a series of meetings, and much form-filling, which has already resulted in seven-and –a-half hours of questioning, much of which was highly personal, and, I believe, unnecessary for the final result. Questions such as; how many times a day does your backside have cream put on it? And how many times a day do you use Femfresh cleansing wipes? These last two questions were asked by a male occupational therapist consultant, who asked me to describe a typical day in my life. I felt such detailed questioning was beyond the pale, no able-bodied person has to reveal such personal detail.
After one such meeting, I was told that the funding needed in order to meet the minimum wage would not be granted, and furthermore, it was felt that I could be left on my own from eight at night to eight in the morning.
I have Cerebral Palsy quadriplegia, total blindness and significant hearing loss, I am unable to move, get a drink, or do any of the usual night-time tasks, and indeed wherever I am placed on the bed, is where I stay, which is not good for anyone. Indeed I have never been left in sixty-six years, so I am not about to start now.
Further meetings were arranged, most of which were questions of a feeding and toileting nature, asked ad nauseam, and little or no progress has been made.
I am not the only one requiring full-time care; the local authorities must wake up to the new obligations in respect of the new living wage, and self-employment laws.
This Issue cannot be shirked by the local authority, they will not be able to give a carer a flat rate of £32.60 per night for attendance throughout the night, and this must be met at the new rate of £7.20 per hour.
During my meetings with the local authority I have been told that certain care agencies are doing the work for £750 per week, this is an impossibly low charge, and indeed if people are only receiving this, then the care agency is breaking the law. There is a legal obligation to pay for the correct number of hours at the correct rate, however inconvenient this may be to social services.
The fact of the matter is that more funding must be put in to the care sector to meet the necessary requirements, as yet it is evident that this has not been done, and people’s care needs are being trimmed to the limit.
There are at least three-quarters of a million people requiring home care support in the UK, so if one has to add the increased cost of the new living wage, together with changed employment status of the carers, the cost will be astronomically expensive for local authorities up and down the land.
George Osborne talks about the cost to small businesses, but he has not taken into consideration the small army of people who are meeting the cost of care week on week. That also does not include those who receive the derisory constant attendance allowance, recognising that many of them are the unsung heroes in all of this.
I did not ask to have disability, but I have done my best to work with it, and make something of my life despite it all, there will be those who will sit back and say it is all too much to cope with, will bury their heads and hope that the problem will go away, but sadly it will not, it has to be confronted and put on an equal footing with others providing similar work.
All I want to do is live my life as quietly, peacefully and enjoyably as it is possible to do. I am not asking for support over and above what I am legally entitled to, but if necessary, I will fight this issue within the courts.
There is no question that I want my carers to receive the living wage and do everything possible to give them the respect they deserve. I recognise that Social Services do not have a bottomless pocket, yet I need to survive and have a quality of life that is meaningful and not just enabling me to exist.