My name is Elaine and I have been married to my husband
John for 23 years. In 2002 we were just a 'normal
family'. We had three children, John worked hard as a
maintenance engineer and life was, in the main, good. But then
something odd happened to John and he lost the use of his right
leg. Over the next few months a few other strange things began to
happen to him as well. It took two years before eventually doctors
were able to diagnose that John had Multiple
Sclerosis.
We realised that we needed to adapt the house to make life
easier for John - and we were advised that we could be
eligible for a Disabled Facilities Grant, to build a ground floor
bedroom and wet room. Although, as John was still working and
earning, we were told that we would have to pay the first
£156,000 of any building works.
In late May 2006, literally just as the extension was
finished - thank goodness we hadn't waited any longer - John
suffered a huge relapse, which resulted in him only able to move
his head. His legs and arms, along with various other
parts of his body, had given up and our lives were
again turned upside down. What happened next can only
be described as a living nightmare.
Our days were filled with visits from doctors, nurses,
physios, occupational therapists, relatives and friends and
in-between their visits we were learning how to dress, feed,
toilet, bathe and hoist John. It was like looking after a 6ft,
16stone new born baby.
Despite all the visits from specialists, nobody told us that we
could actually get some hands on help. Then one day when I was
feeling pretty down and struggling to cope, John's physio
suggested that I contact Social Services or Adult Social Care
and Health as it is now called.
It seemed really scary at first, registering as
an employer, recruiting staff, dealing with tax, National
Insurance and Public Liability Insurance, but it actually
wasn't that difficult and was fairly straight forward. If you
have a computer working out tax and National Insurance is
easy. Most Local Authorities offer a payroll service so if
you choose to use it, it's even easier!
I quickly got to know the girls in the finance section of direct
payments as I was almost constantly on the phone to them
asking, 'how do I do this' or 'how do I do that? Can I
do this or can I do that'? Between us, we got to grips with
it.
Although John was by now very severely disabled, his
mind wasn't and one thing John and I felt very strongly about was
that he should be in control of his care needs. We
didn't want different people coming in and out of the house at
times to suit them. John didn't want to have to get up at 7.30 if
he didn't want to, nor did he want his lunch exactly at
12pm or be put to bed at 6, or 10 o'clock because it
suited someone else. This was about HIM we wanted John to stay
in control.
We quickly learned that one of the biggest advantage an
individual budget gives is the freedom and flexibility to be
in control and do what you want, of course providing its legal
and within budget. We were less restricted than we were with
direct payments. For example with direct payments each
month we had to make sure John received his assessed care
hours, when in fact sometimes, he didn't need all of them for
one reason or another. It would have been good if we could
have banked those hours for when they were needed. Now, with his
individual budget, we can do exactly that.
A personal or individual budget also impacts far more widely
than the individual. Only recently one of the vital cogs in our
wheel broke. My mum became very ill and without even thinking about
it, I was able to pull in more hours from our personal assistants,
ensuring home ran smoothly while I was with my mum and dad when
they needed me for a change, usually it's me needing them!
Again, we were in control dictating what support we needed and
when, with direct payments it would have been possible but wouldn't
have happened immediately when we needed it to. An individual
budget is tailored for the individual; everyone is an
individual, regardless of their disability and need. Never
before has there been the opportunity to tailor a care package to
suit each person.
It really saddens me to know that there are hundreds, possibly
thousands, of people out there needing support for themselves or,
crucially, carers literally giving up their lives to care for loved
ones, not knowing that help is available. We are in the
process of setting up a Peer Support Group in St Helens to try and
reach out to those people who want to ask 'a daft question', who
need to know that they are not on their own, who may be looking to
access support and don't know how to go about it, who may be
frightened of asking for help for fear that they or who they are
caring for may be put in a home or they will even lose their home
and savings. It's sometime easier to ask someone actually
experiencing the same or similar themselves.
Our transition from 'normality' to the sheer terror of serious
illness and disability, from no support to direct payments and now
self-directed support has not been easy. I am not pretending it
has, but more has gone right than wrong and we know where to turn
if we do hit a problem. We are now IN CONTROL and making sure we
get the most out of each day.
Last Updated : 20 January 2011. Page Author: Paul Ferguson.
