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Mari story
Personal health budgets
Charles, 70, from Dover, Kent, is severely ill with a
movement disorder. His wife, Marion, 66, is his main carer.
A personal health budget enables an agency carer to look
after Charles while Marion takes respite for a few hours
every week, which benefits them both.
Charlie has been
diagnosed with
Progressive Supranuclear
Palsy, a degenerative
disease which affects eye
movement, balance,
mobility, speech and
swallowing. It is caused by
the progressive death of
nerve endings in the brain.
Progressive Supranuclear Palsy
robs him of the ability to
communicate effectively with
the world around him. Its
symptoms are similar to that of
Parkinson’s Disease.
Ever since Charlie came out
of hospital after being very
poorly 15 months ago, he
has been bed-bound. I am
his main carer, but we are
helped by NHS Continuing
Healthcare which funds five
care visits per day for Charlie.
This means I get help with
washing Charlie, moving him
from the bed to a chair at
lunchtime and back again two
hours later, turning him in the
evening, and then settling him
for the night. To make sure he
is turned frequently when in
bed is particularly important,
to prevent him getting
pressure sores, due to the
vulnerability
of his skin. I attend to all other
aspects of his daily care
including feeding.
The care Charlie receives is
excellent – I cannot fault it. But
the downside was that I rarely
got out of the house. In fact,
for the first nine months after
Charlie came out of hospital, I
hardly ever left our home. My
family helped whenever they
could, but they have their own
families to care for.
“The care
Charlie receives is
excellent – I cannot
fault it. But the
downside was that
I rarely got out
of the house. “
To be honest, not leaving the
house did not concern me too
much at first. I’m an organised
and resourceful person and
I did all our shopping online
and the pharmacy delivered
Charlie’s medication. Plus,
Charlie is my husband, I love
him and I want to care for him.
Dr Greg Rogers, a GP in Cliftonville, Kent says: “Personal
health budgets will form a useful new way of giving patients
more ownership and control over their ongoing healthcare.
But as the months passed it did
become restricting, and very
tiring. I also missed contact with
the outside world.
I think we should welcome the opportunity to work closer in
partnership with patients and their health care providers to get
the best results for their long-term health care.”
It was then that Continuing
Healthcare staff suggested a
personal health budget to me.
They put me in touch with
health broker Rebecca, whose
job it is to support people to
decide the best way personal
health budget funds can be
used to meet their needs.
An assessment was made of
Charlie’s healthcare requirements.
There was no way we would
have accepted Charlie going
into a nursing home, for me to
gain some respite. So instead
we chose to receive part of our
existing budget as a monthly
direct payment for health care
The best results from long-term health care
It is encouraging that the early feedback from the pilot sites
suggest that the outcomes for someone using personal health
budgets are improved too.
to pay for a carer to look after
Charlie while I had four hours
of respite every week.
Charlie. The break perks me up,
and I have something else to
talk to Charlie about.
I’ve now had this respite since
November last year and I have
been using the time to go out
shopping again, and to visit
friends if I have enough time.
Also, I’m a member of the Lions
Club, and I’ve been able to go
back to meetings and events
again, which I attended regularly
before Charlie became ill.
“Respite care has
made a huge
difference. I return
refreshed, and it
provides a change of
routine for Charlie“
It has made a huge difference.
I return to the house refreshed
to continue looking after
It also means that Charlie gets to
spend time with someone else,
the respite carer, so it provides a
nice change of routine for him.
A personal health budget allows people to have
more choice, flexibility and control over the health
services and care they receive.
The Department of Health thanks the people and families
concerned for sharing their personal stories. For further
information please contact:
Kym Lang, communications manager
Personal health budgets pilot programme
tel: 020 7972 4956/020 7972 3045
email: personalhealthbudgets@dh.gsi.gov.uk
web: www.dh.gov.uk/personalhealthbudgets