Suzanne has complex health needs. All options for support were
considered but the only feasible one - from everyone's point of
view - was for her to use a direct payment to employ her own staff
in her own home.
Suzanne is 52, and has limb-girdle muscular dystrophy. She needs
assistance with most physical tasks. She uses a wheelchair and has
needed assisted ventilation for the past 18 years. She lives in her
own house. The help she needs to maintain her independence, to
pursue her priorities and exercise her preferences is provided by a
team of Personal Assistants whom she employs through direct
Suzanne's support is currently funded 70% by healthcare and 30% by
social care. At one time it was entirely funded by Social Services.
Although it has almost always been acknowledged that her needs are
a combination of health and social care needs, it was not until a
new social worker became involved in her case about three years ago
that the PCT began to contribute to funding. This does not mean
that Suzanne herself receives anything from the PCT. Money is moved
between the PCT and Social Services so that, although the funding
which she receives remains unchanged, the PCT makes a 70%
contribution to it.
Initially, Social Services organised the support she
needed and employed people using an agency. However, two main
changes meant that this became problematic:
- the agency found it harder and harder to get staff
- the settings on Suzanne's ventilator needed to be changed at
night and in the morning. This need presented a logistical problem
as the agency staff were not allowed to change ventilator
The options which were discussed were essentially for
- use direct payments, where she would be responsible for
obtaining her own staff, and making decisions which were
problematic for agencies, specifically, whether staff could or
could not change her ventilator settings
- move into residential care.
Benefits for Health and Social Services
For Social Services, Suzanne's choice of direct payments was
hugely advantageous. She describes how: "I got them out of a hole …
they weren't able to cover it." A social worker told Suzanne that
if she had been unable to manage the direct payments option, they
do not know what they would have done. Realistically, although
residential care was floated as an option, this would not have been
a real possibility, because there was no residential care facility
that would have been appropriate for Suzanne.
Because she needs assisted ventilation, even in a residential
setting Suzanne would still need one-to-one care available and
therefore an extra member of staff at all times. So there would be
no benefit in cost terms against the provision of support in her
own home. In addition, residential care staff would not necessarily
be able to change ventilator settings any more than staff in
Suzanne's own home could.
The other option which might address changing ventilator settings,
would be for Suzanne to live in an intensive care unit. In purely
financial terms, this would be extremely expensive, and an
inappropriate use of an ICU bed. In human terms, an intensive care
unit is not an appropriate place for an adult who is well, but
requires long-term assisted ventilation to live.
Thus, the only real option was for Suzanne to use direct payments
to manage her own team of Personal Assistants.
For the same reasons, the PCT would derive no benefit from
Suzanne's support being organised in any other way. Her
system is established and effective in terms of cost, workload and
practicality. Thus, it was in everyone's best interests to find a
method to enable the PCT to contribute to the funding without
altering the way in which Suzanne managed her life.
There has never been an issue about the cost of Suzanne's direct
payments, because this is the only viable option, and the
cheapest. If her own staff are sick or there is a problem
with staffing, Suzanne can use Thornbury Nursing Agency to cover
individual shifts. It is rare for this to happen, but it is
essential for Suzanne to have some backup as she needs 24 hour
support. An alternative remains that she can be admitted to the ICU
if she cannot cover the shifts with her PAs. One social worker
suggested that, as well as her direct payments, a fund should be
set aside in a bank account in case Suzanne does need agency staff,
so that she knows that she will not be left without support.
This has not been set up or needed, but it indicates that there is
a commitment to ensuring that Suzanne has adequate funding.
In many respects the human benefits of this arrangement derive
from the fact that this was the only real option.
However, comparing this with the option of residential care,
Suzanne "has my life." She is independent and lives as she chooses.
She has her own house, her own car which her PAs can drive, and
freedom to do what she pleases, when and how she chooses. If she
were to live in residential care accommodation, there would be many
restrictions on her surroundings, the possessions she would have
room to keep, her privacy, and her lifestyle. Of course, she would
not necessarily be able to choose the staff who help her. By living
in her own home, with PAs whom she hires, Suzanne says : "I
am in control of my life."
Because Suzanne decides who she hires as a PA she can choose
people who she will be able to work with. As a PA is with her 24
hours a day it is important that Suzanne gets on reasonably well
with them. When choosing staff, Suzanne can prioritise the skills,
knowledge and attributes which are most important for her, and
which will help her to live the life she wants. On a day-to0day
basis, she can organise her life as she chooses, rather than it
being influenced or dictated by the agendas of other people or
Although Suzanne uses direct payments, she did consider using a
Private Healthcare Company who would organise her support for her.
However, what was offered was not what Suzanne wants or needs. This
approach would have been considerably less flexible, and Suzanne
would have had much less control over her life. The regulations of
the company, and their protocols and procedures would have meant
that, instead of being in control of her own life, a third party
would organise Suzanne's life to a great extent. Their values, not
Suzanne's, would dominate. The company's regulations and decisions
on risk management, not Suzanne's own choices, would determine what
she was able to do. By hiring her own PAs, Suzanne can, like any
other person, decide what the limits of her safety are and what
risks she wishes to take. The company's approach tended to
focus on her medical and technical needs, for example, managing her
ventilation, rather than on her as a person.
A further advantage of direct payments is that the money is paid
directly to those who provide Suzanne with support. Although staff
in agencies or companies are rarely paid significantly more than
Suzanne's PAs (excepting perhaps Thornbury, who have to get trained
staff) there are fewer overheads. Less money is spent overall, and
a greater proportion goes directly to those providing
The main challenge for Suzanne is finding adequate numbers of
appropriate staff to be her PAs.
Mechanisms for moving money
Section 27 is used to transfer money from Health to Social
Suzanne needs a very high level of physical support - arguably
almost the highest possible level - but manages this herself by
using funding from the PCT and Social Services to directly purchase
her own support. Her story illustrates how this has enabled her to
remain independent, and to live her own life. This is the most cost
effective and possibly the only realistic way in which her support
could be managed. It also means that Suzanne can live her life as
she chooses, within the physical limitations which her disease
imposes on her. She can make her own decisions regarding lifestyle,
risk, and, within the limits of available applicants for PA work,
the individuals who accompany her almost constantly.