Hannah (29)
has been disabled since an injury at the age of 14, which left her with Complex
Regional Pain syndrome and a range of secondary illnesses and complications.
She’s a disability and lifestyle blogger and started her blog Hannah’s Hope in 2018. She’s passionate about making a
difference, changing perceptions and promoting equality.
The start of care in the community
I have depended
on care in the community ever since home leave from hospital at the age of 16. However,
my care was on a more permanent basis after I came home at the age of 21. This
was after spending 4 years in hospital and 1.5 years in a neurological unit and
care home.
Initially, I
had continuing health care which included a 24-hour nurse and carer from an
agency. I had high medical needs and was dependent on then for every aspect of
care and life in general. This was hard, as a teenager and young adult I should
have been gaining independence, whereas I had lost all independence and virtually
had none.
Then, as my
needs reduced, I just had agency carers during the day and night. After being
reassessed and deemed no longer eligible for continuing health care I was
transferred to social care. Under social care, I have direct payments and
employ my own Personal Assistants (PAs). It has been like this for 5 years,
with a team of PAs who do regular day and night shifts each week.
Switching to Personal Assistants
Employing PAs
works well for me and us as a family, there is continuity and my PAs know how
to look after me. There is also a degree of flexibility. In contrast, with
agency care sometimes a carer would come one day and never be seen again. I
would spend the whole day explaining what I needed and how to do things to
avoid added pain. This was physically exhausting and I only achieved half as
much as I wanted to. Some weeks I could have several new people and was
constantly going through this process. Having PAs also cuts out the middleman,
as you can talk directly with the person rather than through the agency.
On the downside
it can be tricky to find the right support. You are in charge which has its
pros and cons. Sometimes I have found this difficult. They are helping me with
personal care, which is so intimate, yet you need to hold the authority of
being the boss. Furthermore, you want to get on with them, being a friend whilst
professional as well. It is a really difficult relationship. Sometimes I feel
that I don't have the authority as much because of my age. I am in my 20’s and
they are older than me.
There is a lot
of work involved employing PAs from advertising, recording hours, submitting
them to the payroll company, paying PAs, pensions, arranging holiday cover to
name a few. With an agency they cover all of these things. This may sound
easier, but in reality it was very stressful.
My PAs help me
achieve a better quality of life, they support me with personal care,
physiotherapy and transfers to name a few.
My support is varied and does involve my
family
I also get a
huge amount of support from my parents. Particularly, my mum. People often ask,
what does she do, you have PAs that look after you? Well, she actually does an
awful lot! From looking after me when I don't have a PA, to helping my PA on
the several days a week when I need the support of two people. The list could
be a page long: taking me to physiotherapy, swimming, work experience,
hydrotherapy, oxygen therapy, hospital appointments. Let’s not forget seeing my
friends. There also are mountains of emails and administration jobs which
include PA payroll, ordering my medications, washing my clothes, cooking meals,
arranging services for equipment and many other battles.
My Dad pumps up
my wheelchair tyres as well as maintaining my powerchair and manual chair. He
also maintains and washes my wheelchair accessible vehicle to name a few. I am
so lucky to have amazing parents, who are so supportive and do so much for me.
Do you
receive any care or support in the community? Do you employ your own PAs? How
do you find them? Let us know in the comments below!
