Bored by her services

Case study
The name of the service user  has been changed

SITUATION: Phoebe Harrison is 54 and uses a
wheelchair. She lives alone in a small village about seven miles
from the nearest town. Her ground floor flat has been adapted and
she manages most tasks independently. She receives a package of
care to help with household chores and to take her shopping and on
trips. She is picked up by bus two days a week to attend a day
centre. 

PROBLEM: Phoebe has repeatedly had cause to
complain about the level of service she is receiving. She says she
is deemed a low priority because she can manage her own personal
care and so is frequently sent new staff and temporary staff. They
are often late. Sometimes no staff at all turn up on her given
days. She is also convinced that because she has complained so
often, they are providing a sub-standard service as a “punishment”.
Phoebe has said that she wants to learn to drive so she does not
have to be dependent upon anybody to get her about, and she wants
the local authority to pay. They say they will not, even though
Phoebe argues that if she could drive she would need less support
and thus save the council money in the long term. She is also bored
at the day centre and wants to do different things – especially
gardening and carpentry; but the centre only offers very basic
courses and Phoebe wants to excel. She overheard one worker call
her “a bloody day dreamer” on the phone.

Practice Panel (Derbyshire physical disabilities
team)
Julie Heath – disability service manager ; Angela
Marsh – occupational therapist ; Stuart Drabble – social worker
(sensory) ; Annette Whittingham – care manager ; Kathy Richardson –
disability resource team, NHS

Panel responses

Julie Heath
A direct payment would enable Phoebe to take control of her support
needs and manage her package of care to suit her lifestyle choices.
It is a common complaint where home care is provided by mainstream
services that because of the numbers of people with high-level
support needs, people like Phoebe are treated as a lesser
priority.

One can appreciate the tensions of home care organisers when a
carer rings in sick and calls have to be covered by other staff;
those service users with personal support needs will always take
precedence. But this does not help Phoebe who is trying her best to
be in control of her life.

Direct payments allow money to be given to the service user to
enable them to purchase their own support package following an
assessment of their needs. The government has set very ambitious
targets regarding the take-up and promotion of direct payments for
local authorities. The green paper for adult services wants to see
people put at the centre of their assessment, innovative service
development, and for direct payments to be extended.

Phoebe, with the support of a care manager, could discuss the
options available to her. For example, here in Derbyshire the
Centre for Inclusive Living assists people with the recruitment and
selection of personal assistants and also administers a payroll
system. Peer group support is also available.

Initially, many service users can be daunted by the prospect of
becoming an employer and managing their own support staff. But with
practical support and encouragement many feel they do have more
choice and control over their lives. People should not be hampered
by the inflexibilities of traditional ways of delivering support
services.

Users of direct payments can expect a tailor-made and more
responsive service because they are in control. However, there are
also responsibilities to take on board. The package of support will
only be as good as the quality of the staff recruited, and
therefore, it is important to become “good” employers and retain
carers. It will also be necessary to meet the local authority’s
auditing requirements, for which support is provided.

Angela Marsh
Phoebe is not asking for more services; she is just asking for
services to be better tailored to her needs. She wants to do
“different things” and perhaps she wants to feel more in control of
her life.  

I think she is asking for an everyday routine that is just ordinary
and normal. She wants the freedom and convenience of being able to
drive and she wants to be able pursue her own interests.  

Phoebe needs to be encouraged and supported as she seeks
information about driving and owning a car. She should be advised
to consider contacting the Disabled Drivers Association to obtain
information on driving instructors, vehicle adaptations and contact
details for the independent assessment centres. Phoebe should also
consider contacting Motability to find out if she is able to get
help to fund a car, driving lessons and vehicle adaptations.

With all this information to hand Phoebe may want to think again
about whether driving and running a car is really what she wants.
It might be simpler for her to use wheelchair accessible taxis or
think about buying a battery operated wheelchair or a mobility
scooter.

But if Phoebe is still keen to own a car she should be advised to
seek an assessment of her potential ability as a driver and her
special needs with regard to vehicle adaptations to assist with
both driving and wheelchair stowage. Some driving schools offer
this assessment or it can be obtained at an independent assessment
centre.   

Phoebe also wants to expand her interests and she is particularly
interested in gardening and carpentry. She might start by asking if
the local day centre has outreach workers that would help her to
source local groups and classes. Outreach workers might also be
able to go with Phoebe to the first few sessions of a new class,
until she feels confident enough to go alone.  

Phoebe should also be given appropriate support to allow her to
look in the local library, local papers or on the internet for
details of local groups. If local groups and classes don’t meet
Phoebe’s needs she might want to be supported to pursue her
interests by making her own arrangements to visit gardens, craft
fairs, exhibitions and so on.

User view
It is astonishing how many people are being failed by the system
which is meant to enable them, writes Simon
Heng. 

Phoebe’s independence is restricted because she is not able to get
herself around, her well-being is compromised because she’s bored,
and she lacks choice of stimulating, educational opportunities – or
choice over who helps her. 

Occasionally, I experience the intrusiveness and uncertainties of
agency staff. I ask myself the usual questions: Will they turn up?
Will they be capable? Can I trust them? And that’s even before they
walk through the door. Imagine a different stranger coming into
your home several times a week, sifting through your possessions,
cleaning to their standards, not yours. With regular help, at least
you can form a relationship and a shared understanding about your
preferences. 

If the opportunities provided by a local day centre simply aren’t
helping Phoebe to develop, why can’t her local authority help find
a way of extending her skills? Surely, we have left behind the era
of basket-weaving as “occupational therapy”, where craftwork is
actually just a way of passing the time. If this needs financing,
why not use the funding ties which pays for Phoebe to attend the
day centre, to pay for transport and course costs at a local
college? She may have friends at the day centre – for many service
users, these relationships are the bedrock of their social network
– which she might risk losing if she stopped attending, but at
least she could be offered the choice. 

Phoebe can’t afford to pay for driving lessons because, almost
certainly, she receives benefits, which barely cover the cost of
living. We know that she would like a car. Perhaps it could be
funded through the Motability scheme (which was set up to provide
disabled people with safe, reliable and affordable cars).
Motability offers scholarships for disabled people to learn how to
drive. 

There is, however, another solution – as long as Phoebe feels able
to cope with it. She could be offered direct payments. She could
employ her own helpers, and have more control over when she uses
them. Direct payments could fund her education so that she has the
chance to excel. She could even use it to fund her driving
lessons. 

Finally, it is astonishing that a worker called her “a bloody day
dreamer”. It implies that Phoebe has no right to have ambition or
become more independent. If the worker wasn’t challenged, or
disciplined, it means that their attitude is condoned. 

Simon Heng is a disabled service user