My name is Terry. I’m 48 years old. I live in Staffordshire and I’ve been disabled since birth. I’ve required some level of care all my life and I’ve had my present level of hourly care for over 10 years. Part funded by my Local Authority (L.A.) and part funded by the Independent Living Fund (I.L.F.) Although I have been asked by my care provider to have a ‘Care Diary’ I’ve always declined. This has never been a problem. My care provider has never insisted I have this, the I.L.F. have never insisted I have this and the L.A. have never insisted that I have this…Until now. In August 2014 my L.A. contacted my care provider requesting copies of my care diary plus a few other details about my care package, threatening them that if this was not done that they would be reported to the Care Quality Commission (C.Q.C.), the governing body for all care providers. I gave my care provider the requested details and advised them to tell the L.A that there were no copies of my care diary as I’d never kept one. My care provider told me (right or wrong) that there was a legal clause that allowed me to decline the use of a care diary. My L.A. was duly notified of this.
I totally understand the position of accepting a care diary to use as evidence of what your care needs are. For some people who are not capable of managing their care needs themselves a care diary is an essential part of their daily lives. It protects them and the carers who care for them. I accept that. However, I do feel that some people have become indoctrinated into believing that a care diary is needed when perhaps it is not.
I have two issues with a care diary, the first is: How much information on what is done for you is enough? Or not enough? Or too much? By providing your L.A. with a complete list of what care is done for you. including times, are you giving them the evidence they need to reduce your care? For example: If you take 30 minutes to get out of bed in the morning and you like to be up for 9 am then your carer/carers would need to arrive at your home at around 8:30, maybe sooner. But if on a Sunday for example, you like to stay in bed for a while longer and get up at 10 am instead of 9 am, but you don’t do this every Sunday (it depends on how bad the hangover is from the night before maybe) and this information is recorded in your diary, are you leaving an opportunity for your LA to say that your carer can come in 1 hour later on a Sunday? Even though this is not a regular thing. Another example: You go out from your home most, but not every Tuesdays and Thursdays for about 3 hours each time. This is recorded in your care diary. Will your L.A. decide that if these are your usual days for going out and for this average amount of time, then that’s what we’ll give you in funding – 3 hours for every Tuesday and Thursday. You cannot change your ‘going out’ day. You cannot change the length of time you go out for. No flexibility, that’s it.
We are all worried and concerned about what the future holds for our care and if L.A’s. gain total control over our funding, will they use the data that you give them to determine the amount of care you get. L.A’s. have a different remit for calculating your care, we know this. ‘Clean and feed’, or when I had my first care assessment it was called ‘needs and wants’. Meaning they would provide care for what is considered as a ‘need’ but not for the things you ‘want’ to do in life. Everyone creates routines in their lives, we do this so the things we do will run smoothly and more efficiently saving time so we can do more things. Of course these routines don’t always go to plan, there are many reasons why our plans change: Because of how we feel physically; because we get a phone call from a friend just as we’re about to go out the front door; the weather and many more things. As John Lennon said, “Life is something that happens whilst making other plans”. Life is random and constantly changing and we change and adapt to those changes as best we can. If your L.A. uses the data in your care diary to determine how much funding you need for the care you need for you to do the things you’ve said you do, you could find your choices being very limited. This is institutionalisation.
If the I.L.F. closes down, I’m positive that disabled people will not be put back into care homes. It simply costs too much. We could however, end up being institutionalised in our own homes.
I’m a “glass half empty” kind of guy so it’s very possible that what I’m suggesting will never happen and L.A.’s would not be so underhanded but when money starts to get tight in government as it is now, there’s a lot of pressure on department to save cash and reduce costs, by any means.
The second issue I have is privacy. This is my primary reason for refusing a care diary. I’m a private person and I don’t want others reading when I eat, get out of bed, have the house vacuumed, the laundry done or when I go to the toilet! By monitoring my activities every day it makes me feel as if I’m asking permission from a parent or teacher to do these things. Quite frankly I find it humiliating. I would feel I’m being treated like a child. I’ve spent some time thinking about other groups of people living in UK society that have such personal information recorded about them and the reasons why this may be done. A patient in hospital for example, will be monitored to make sure their health is improving and that the treatment they are receiving is correct and safe. People with mental health issues are likewise monitored often for the excuse this is for their own safety, for the safety of others and for their health. School children are monitored, again for their safety and that of others and to check that they are learning. I fail to understand why my L.A. needs to know what time of day I had a shi….err shower. The information that’s being recorded serves no purpose. It does not benefit me, as I already know the last time I had a shower. This data only serves the purposes of my L.A. saying that it evidence of my care needs. I’m challenging this level of information recording. Is it really necessary for a mentally competent adult to be monitored so deeply? I believe that my care plan and other monitoring checks and assessments that my care provider uses are sufficient to show what my care needs are. Also, who will be reading this highly detailed diary of my care? Will this highly private information on my very personal care be safely and securely stored so it doesn’t get read by people who should not be privy to it? I have a huge issue with this very personal part of my private life being written down for some unknown person to read. I feel it is a huge invasion of my privacy that will not benefit me, and may indeed be used against me in time.
At the end of November my L.A. repeatedly contacted my care provider insisting that I have a form of care diary. Not surprisingly, as before, I refused. Currently my care provider’s legal department is trying to determine if they are breaking CQC regulations. They have asked the CQC if their current record keeping is sufficient or not. The CQC’s response is you must comply with what is written in the “Essential standards of quality and safety” page 172.
“(a) an accurate record in respect of each service user which shall include appropriate information and documents in relation to the care and treatment provided to each service user”
It’s quite vague and opaque.
The last communication I had with my care providers was the legal department still don’t know if they’re breaking CQC regulations. ‘Can of worms’ anyone?
Finally, if it is decided that a care diary must be placed in my home by my care provider and I still refuse to accept it. What happens then?
If you also live in Staffordshire and are concerned about being forced to keep a detailed care diary and want to mount a group challenge against this then please email us at firstname.lastname@example.org