pku home support
produce about 35 percent of all low
protein special foods. This new service
by Dr Anita Macdonald
has been piloted in three PKU centres:
Birmingham, Glasgow and Belfast.
Consultant dietitian IMD
In the West Midlands, the SHS
Nutricia home delivery service sends
patients/carers a monthly picture
Home support
order sheet for all their low protein
products. The order form takes sec-
In the UK, there are approximately cause distress to carers and patients
onds to complete and it is requested
120 special low protein foods ap- and make them feel like they are
this form is returned to the home de-
proved by the Advisory Committee
‘begging for food’.
livery company within seven days. A
for Borderline Substances (ACBS)
prescription from the GP is requested
and available through prescrip-
How can this situation be improved?
via the home delivery company and
tion via GP’s for patients requiring
Ideally, carers and patients should
the low protein foods are delivered to
the family home within 28 days of the
low protein diets e.g. patients with
have direct access to low protein
original order sheet being completed.
phenylketonuria and other similar
special products. For example, pa-
amino acid disorders.
tients/carers could be allocated with
An evaluative study
It is essential that patients widely use
an encrypted credit card, identifying
This new service has been evalu-
these products to aid dietary variety,
their individualised annual entitlement
ated in the West Midlands. Feedback
help adherence and improve overall
(according to age and other needs)
from forty one subjects (32 families)
metabolic control. The system of ob-
for the ACBS low protein prescription
was obtained. The patients median
taining low protein foods has remained
foods. Patients/carers could then
age was seven years (aged 0-53
unchanged for over 30 years. Although
obtain these items either through
years). They were all on a home de-
we are fortunate that families do
chemists, the internet or home deliv-
livery service for protein substitutes
not have to pay for the cost of these
ery companies. This could be done
before starting this new service. All
foods, the system for obtaining them is
without reference to a local GP, but
had been on the new pilot service for
unnecessarily bureaucratic, and carers
controlled through hospital special-
at least three months and some up to
or patients are commonly left frustrat-
ist centres. Annual usage could be
reported to dietitians and the patient
10 months before evaluation. Each
ed with a sense of helplessness.
should have easier access to their
family was interviewed by the same
Access to low protein special
specialist foods. This type of system
IMD dietitian. The following was evalu-
foods involves carers or patients
ated: number of food items orders,
visiting their GP practice month after
should be more economical for the
problems with GP’s practices, pattern
month; explaining which special foods
NHS to administer. Unfortunately, no
of prescription requests for non-SHS
they need, clarifying why they want
such systems have been considered
low protein foods, receipt of incorrect
variety, and justifying the quantity
for low protein foods although innova-
foods, and overall satisfaction.
of product they require. They then
tive pilot schemes have been tried for
have to wait for the prescription to
patients on gluten free diets.
The outcome
be signed by the GP, which in turn is
It may be sometime before this issue
The new service was a huge suc-
passed to a local chemist who pur-
is considered by the authorities but the
cess. Carers and patients were glow-
chases the foods from a wholesaler or
problem is likely to be magnified as the
ing in their praise. The expressions of
directly from a company.
number of specialist low protein foods
relief that families no longer needed
increase. Therefore, it is important to
to negotiate with their GP practices
The issues
consider any alternative system that
for at least some of their dietary prod-
This system works well for some
can at least ensure the families have
ucts were overwhelming. Story after
families but not for others. Some
easier access to low protein foods.
story recounted difficulties with the
families keep to the same low protein
traditional system. Prior to home de-
foods from month to month; but other
Interim measures
livery, 44 percent (n= 14 families) said
seek variety and like to try all the low
Over the last four years, patients
they had received gluten free foods
protein products available. However,
with amino acid disorders have been
instead of low protein foods and 22
many GP practices appear to dis-
able to obtain their protein substi-
percent (n=7 families) reported receiv-
like altering prescriptions from month
tutes via home delivery from one
ing out-of-date products.
to month. They may be unfamiliar
of two companies (SHS Homeward
On the new home delivery service,
with the low protein products, have
and Homecare) who between them
the median number of low protein
difficulty locating these on the com-
can supply all the protein substitutes
foods ordered was 5-10 items monthly;
puter systems and may have limited
on ACBS prescription available in
91 percent (n=29 families) said their
knowledge of the specialist condi-
the UK. This service has been greatly
deliveries came on time; 91 percent
tions. Sometimes gluten free foods are
appreciated by families who have
(n=29 families) said they received all
mistakenly issued instead of low pro-
chosen to use it. It has guaranteed
the products they had ordered; 100
tein foods. Sometimes families have
a consistent supply of these essential
percent (n=32 families) said it was
no issues with their GP practices but
products providing regular communi- easier to order both different and new
simply feel belittled and guilty request- cation with the home delivery team low protein foods. Many commented
ing special food on the ‘state.’ The is maintained. SHS Homeward have that they had been able to try differ-
system is far from dignified. Searching now extended their service to include ent low protein foods since this service
questions and careless comments can the delivery of low protein foods. They had been introduced; and some
NHDmag.com May ‘08 - issue 34 35
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