Hello, lovely people!
If you're new to this channel, hi!
My name is Jessica
I have a disability; a chronic illness;
fabulous hair
and I've consistently had a carer for thirteen years now
No, I didn't spell 'career' wrong in the title
This video's for anyone who's interested in caring
whether that's as a job or as a service user
Sorry, I really hate the term "service user"
"Disabled person" is not a bad term
and I hate the way that certain services make me feel like it is
by avoiding using that word
but, equally, you don't actually have to be disabled in order to receive help,
hence why I said "service user"
This video should also be quite interesting if you are neither of those things
but just like to learn about different people's lives
If you can't tell already, I am incredibly English
So, my familiarity with the money-government side of things
does come from a very British point of view
I know it's very different in other countries
Obviously that experience of working with a carer is very universal, however,
so hopefully you will be able to take something from that part of this video
The first thing to tell you is that needing a carer is nothing to be embarrassed by
or ashamed of
It can seem a little alarming,
especially since there's such an intrusive personal space aspect
But they are there to help you be more independent, not less
so do give it a chance
It is really weird having someone come in
and do the things that a carer does for you
but I think it's a bit like a mash-up of dating
in that you become so close to someone you're not related to
and doctors
who you don't really care about seeing you naked, as long as they stop the pain
Is that a bad description?
Basically, you will stop caring, I promise
In order to receive help from the local government,
you will need a Care Needs Assessment
Which is where someone from the council comes and assesses your needs
and how they affect your well-being
Basically, you need to have difficulties in your life that arise from having a physical or mental impairment,
or illness
The assessor then asks how you would like to live your life
Not in an abstract 'be a millionaire and own a sports car' kind of way;
more in an 'eat food and bathe' kind of way
And they will then decide how they can best help
Whether that's providing home care workers, where someone comes into your house;
equipment that might help you get in and out of the bath independently
for example
or a ramp at the front of your house
But I'm just talking very specifically about home care workers today
Carers can help in an arrange of ways, whether that's preparing your food;
or washing you; helping you go through your letters;
taking you to doctor's appointments;
keeping your home clean;
taking you to parties, even
That's always a good one
I don't actually remember my own Care Needs Assessment
Not just because my memory is famously poor,
but also because I think I was unconscious
For the whole year
My health had been carooning downhill since my early teens
and then when I was seventeen, it crashed
and I was left with two paralysed arms
and an inability to sit up without vomiting and passing out again
I was also in constant excruciating pain
Fun
My latent genetic disabilities had decided it was time to come out
and there was nothing the doctors could do but give me painkillers and send me home from the hospital
Problem being that my father was working most of the time and my brother was at boarding school
And my mother
My tiny mother had to look after me
For reference, here I am with my mother
She's not actually tiny; she is above average
for a woman
I'm just a giant
There are two options for home care:
Either the council sends someone from their pool of carers
and they pay their salary
or there's a thing called Direct Payments
where the council takes the money that they would've paid for that person's salary
and puts it in a very special bank account
which you as the "service user"
control
And then you choose the person that you want to pay out of that
I shall explain more about Direct Payments in a minute
But needless to say, no one told us that was an option
Over the next year, we had an array of different carers come in and out of our lives
It's a really tricky process, finding the right person,
and people didn't work out for a range of reasons
Some because they argued with my mother
Other reasons were:
Maybe they were only in the job because they wanted to feel morally superior
Like the angry Spanish lady who, driving me to the one school class I could manage that week,
berated me for half an hour
about how there were so many people worse off than me
and that I was a drain on the government
and not deserving of her care
She said to the child who couldn't move her arms; walk two paces;
or stay conscious for more than two hours at a time
Sure, sure, you're a good person, OK
There were also those who had their heart in the right place
but were completely unsuited to the profession
At the end of one particularly hard week,
my social worker arrived having found a new carer
My mother was absolutely delighted since she had been on her own all week
and didn't have the power to lift me
All she wanted was a break and for someone to give me a bath
But the lady turned to her, pulled down the shoulder of her top, and said,
"I can't"
"I've just had surgery to reattach my dislocated shoulders!"
"I can't lift anything heavier than a mug of tea!"
"You'll have to help me with everything!"
My mother shouted me out of the house and then burst into tears
There are a lot of amazing carers as well
but they didn't have any control over where they were placed,
and sometimes they would just be switched out randomly to go to another family
Or they were great,
but the only time they were available was when my brother and my dad were in the house anyway,
not when we actually needed the help the most
Plus, some just didn't fit with what I really needed
At the time, I was seventeen; I'd just had a massive health crisis
that meant that instead of skipping into sixth form with my beautiful dresses,
with my cute smile and chatting to my friends,
I was instead being wheeled in,
unable to take off my sunglasses indoors or
move my arms
I had to ask however was looking after me that day to take me to the toilet
or to bring a drink to my lips
I just desperately wanted not to stand out even more
One of the council's carers was an amazing, helpful woman
but she was also middle-aged and had bright blue hair
and drove a builder's van that drew an awful lot of attention at the school gates
Not what I needed right then
I wanted someone who would blend into the surroundings
Make it look like I wasn't actually a social pariah
I had friends
The type of friends that make other teenagers think, "Wow, that girl in the wheelchair must be really cool"
"I think today I will actually make eye contact with her"
"Rather than making her swerve out of the way and change her path
as I just walk directly into her, pretending she doesn't exist"
Thankfully, someone
(I think it was a friend of my mother who also has a disabled child)
told us about Direct Payments
Direct Payments is a scheme where the government takes the money they were paying out for a carer
and puts it into a bank account with your name on it
You then use that money to employ someone
as a carer
But you#re also then handling their time sheets and paying taxes
and
arranging everything
All the sorts of things that a normal employer would be doing
It gives you a lot more flexibility and control over how your support is arranged and provided
But it does come with the downsides of paperwork
which is sort of fair, I mean,
Also, you have to send back all your forms
because the government needs to check that you're not using the money for anything else
which I totally understand, but it's a lot of paperwork
Fortunately, at the time, I was still living at home, so my mother handled all of the admin
She's a trooper
Carers don't need medical education
and they can be absolutely anybody in your life
except for someone you are related to
or dating
Although those people may actually be doing the job of a carer,
no one really cares or pays them
That's a whole other video
So, my mother asked her beautician if she would like the job
It was honestly the best possible match
She was already in a profession that required her to be considerate,
and to deal with occasionally icky bodily bits
Plus, she was just the sweetest person imaginable
Hannah was only two years older than me
I think
But she'd left school early
so she was already like a proper adult
She could help me with the whole looking after me side of things
while also blending in and looking just like my friend
who just happened to be here
And she was great with my hair, make-up, and nails
Meaning even though I couldn't do it myself, I still looked constantly fabulous
The first day she worked with us was the night of my school leaver's do
(Think prom)
And I was completely terrified
The people who had been my friends for the first year of sixth form and then
completely ignored me for the second year of sixth form whilst I was ill
were leaving, but so were the amazing people who had stepped into the gaps
and had become my friends
And I had to stay behind, repeating the year until I could actually do my exams
without passing out
I'd imagined that night in my head for years
How amazing I would look
How the girl I had such a crush on would dance with me
No where in those dreams did I have to be rolled in by my parents
unable to do much of anything
Wonderful Hannah did my make-up; she took me in her car
and as we arrived everyone turned to stare at the incredibly pretty girl that I had brought along
Everyone wanted to know who my new friend was
and how they could meet her
I think we had Hannah for two years
It's all a bit fuzzy in my mind
But I remember her fitting into our family incredibly well
One thing that's really important is that the carer gets on not just with the person they're caring for,
but also their family; anyone they live with
But, sadly, we could only afford to pay her what the government gave us
and when she was offered a better-paying job, she had to take it
We then tried one of my friends
Yes, it is perfectly OK to employ friends
But it--we kinda... Mmm.
We knew each other too well, and
it wasn't really ideal
We were too close, and we just--neither of us listened to each other
Then came Lauren
who already had sports physiotherapy training
so, yay, I got that side for free
We found her through advertising on local message boards, and it's a route I would really recommend
You'll find people who are totally up for the job
but wouldn't have considered anything with "carer" on it previously
The term 'personal assistant' also makes you sound really fancy
Ooh, but then I went to university
and boy did I crash off that cliff
My condition had been slowly improving
but I wasn't even to the level that I am now
For some reason, we thought it would be a great idea for me to move from my parent's house in Bristol,
where I had round-the-clock 24 hour care,
should I need it,
to Brighton University
Four hours away
and live in student halls
where my care payments only covered three hours a day
I think it was that I had been so very ill before
that I seemed so much better now!
Even though I couldn't actually sit up for long
or be trusted with things
or handle stuff like cleaning and cooking
Being able to complete an essay--
being able to complete an essay when you're tucked up at home in bed
with people nearby who can come and bring you food
and take you to the doctors should you need to be taken
and clean your room and so on
is very different to being suddenly in a new location
trying to look after a disabled body,
manage all household things,
and go to class and write essays
I'm going to make a separate video about being disabled in university
So let me know if you want to see that
It will probably be around the time that university choices are being made
I know when that is now
Because I really wish that at the time I'd had someone's first-hand experiences
to learn from, to help me make informed choices
The gist will be
that during the first year I became very,
very ill
And a huge part of that was down to my care not being good enough
We decided that I wouldn't be able to manage doing all of the admin
and filling out forms and stuff
So instead we found a care agency
and they would send someone in
Six days a week for three hours, and at the end of the month
they would send me a bill and I would just sign a cheque
and that was that
Now, I am very grateful to have been given any money at all
A lot of people in my situation were given half an hour a day
which is completely appalling
But what we didn't factor in is that I have a changeable condition
I need help when I need help, and immediately
But you can leave me alone for many hours
and I'll be happy as Larry otherwise
Having a schedule didn't work for me, because my being ill doesn't work to a schedule
Oh, the horror stories I have to tell
The second problem was that I wasn't able to coordinate my own care
With agency carers, you tend to get a different one every day
and then you have to direct them as to what you need them to do
This led to me being very unwell
but unable to tell anyone what they needed to do to help me
In one case, I lay in bed, barely able to see through the pain,
and the carer, who I had never seen before,
stood at the foot of my bed, repeatedly asking me
what I needed
And when no answer was forthcoming,
she left
Every day, I had to meet someone new;
explain my condition to them,
show them around the kitchen and my bedroom;
lay out my care plan;
and exactly what I needed them to do
And by then, it was almost time for them to go
Also, if I became ill in the evening,
I just had to wait
until someone came in in the morning
And since the money I had been awarded didn't cover Sundays as well,
a few times I became incredibly ill, vomited everywhere, passed out
on a Saturday evening, and then just had to lie there until Monday morning
when someone came in to help me.
It all spiralled downhill until
my parents came to pick me up at the end of the year
and found me
in a dirty room
unwashed and malnourished
University is so fun.
OK, wait
Stare at my beautiful hair for a while
Get over that ugly picture of me
Think about my nice hair instead
I'm not blaming the care agency at all
It's just the nature of that kind of arrangement
You need the person who is in charge to be capable of being in charge
I wasn't
There is a reason so few disabled students live away from home
So, the next year, I was only allowed back to university
on the provisor [?] that there be only one carer
and consistency of care
Hello, Tilly.
In walked Pauline, an amazing Irish grandmother,
with a heart of gold but steel at her core
She was everything I needed in that moment
She bossed me around like no tomorrow
but she also bossed everyone else around
She made sure that all of my pills were delivered on time;
I had absolutely everything I needed;
should I have any symptoms, the doctor WOULD be there;
and they WOULD check me over,
or Pauline would get them
She made my environment completely clean and sanitary
She got really angry at the other students who made a mess
I always had food in the fridge; my bedding was always clean
and occasionally she dragged me into the shower
because damn it, Jessica, you need to wash that sick out of your hair,
even if you don't feel up to it
I sort of pretended to hate it at the time
but it was exactly what I needed
And, sure,
we had some boundary issues
(You can see more about that in my 'End the Awkward' video)
But having someone there to take care of the every day problems of my body
meant that I could actually focus on getting my school work done
When I eventually graduated, met my wife and got a job
- which all happened in exactly the same week -
I didn't need the same type of care any more
It was less about my body and more about helping me with cognitive tasks,
with added first aid and occasional physical care
So I left the agency and switched back to personal care
but made sure to find someone who could handle the paperwork herself
Which is where Clara comes in!
Clara: Hola.
Clara and I worked together at a TV station
She worked underneath me and became my friend
and then my carer
I left that job, and the two of us started working together
independently
with her also being my carer
It was a really great way to do it, because we already had experience of being boss-subordinate in the week days
and then friends at the weekend!
She's really comfortable following my instructions
but, equally, because part of her role - or job -
was to advise me on things I know absolutely nothing about,
I can listen to what she says
and occasionally I do stop working and have a lie-down
when she tells me to
But generally I am quite happy to defer to her
when she knows better
Another plus is that since she handles the Direct Payment paperwork for me
she knows it's not my fault if the government are really slow with payments
Finding the right person is absolutely key to having a good carer-caree relationship
They have to be able to work with you as an equal
but also to take direction
and then stand up to you if they do know what's best for your health
In terms of whether it is best to get help
from the government, Direct Payments, or from an agency
I would 100% say that employing someone through Direct Payments is the best
Even though they are really difficult to set up
You have to have a specific bank account
to put the money in
but they won't give you the money until you've got the bank account
but you can't make the bank account because you can't put your own money in the bank account
And much like Access to Work, it can feel as if all of the information on it is hidden from view
Sadly, you don't become disabled and get handed a pamphlet
on all of the wonderful services you can now use
No, you just need to know someone who is in the know
Side note: Totally get a CEA card. Look that up.
It will change your cinema-going life
Personal choice is the most important thing
If you want to keep a super professional relationship with your carer,
then you do that
If you also need a bit of parenting, there are those carers out there
If you just want a best friend who also kind of helps you shower,
then there are definitely those carers out there for you
and you should do that
It's fine. There is not a rule book
on the carer-caree relationship
They just have to work with your personality
Don't feel that you have to take the first thing that you're offered
but, equally, don't feel like you have to go down the incredibly stressful but technically more freeing route
of Direct Payments if you are perfectly happy with whomever the government sends
and don't mind
You will find what works for you, but it will probably be through an awful lot of trial and error
There you go. My advice and experiences about having a carer
/career
Haha, anyone who came to this video thinking I spelt "career" wrong
and is still here
You are awesome
Please write in the comments
I imagine that is just one person, but I really want to know
I would absolutely love to make a follow-up video to this one
with Clara, so we can answer any questions you may have for her
Also, really love to do it as a live stream
because that way we can be way more interactive
and you can actually ask questions and we can answer them in real time
That will be this Sunday
At 2PM
But do follow me on Twitter to stay updated in case that changes
for some unknown reason
And, if that time is already in the past,
it's OK - there is a link down below in the description, which you can follow
to go and watch that
Please do leave any other questions that you would like answered in the comments section down below,
especially if you are going to be asleep
Bye, bye, my darlings