pku home support pku watch
commented their children were more involved in ordering
their own low protein foods because they could choose
from the picture order forms.
The median prescription request via the GP for non-SHS
by Eleanor Weetch
Loprofin home delivery special foods was once every eight
Dietitian advisor NSPKU
weeks (ranged two weeks to four months). Many said they
requested prescriptions less frequently but ordered larger
volumes of each item. Fifty nine per cent (n=19 families) How much do you weigh?
said they were less likely to use other companies low protein
foods because the new system was so much easier and
Last year the NSPKU ceased to produce a book of
without hassle; 40 percent (n=13) said they struggled to
manufactured food protein exchanges and intro-
obtain other companies products. All said they would like to
duced a protein ‘ready reckoner’ card. The reason
be able to obtain all low protein foods on home delivery.
for this change was that it was very time consuming
Nine percent (n=3) said their GP practice complained
(and therefore expensive) to research and write reci-
about the new home delivery service (they disliked having
pes. Protein values change continually and there are
to alter prescriptions from month to month; and disliked not
so many new foods in the shops it’s hard to keep up.
having direct contact with the carers/patients). Nineteen
However, more importantly, we wanted children and
percent (n=6) of families admitted to not returning their families to work things out for themselves.
order forms on time.
So the ‘ready reckoner’ card was introduced. However I
received a number of phone calls asking for the exchange
The conclusions
booklet and an explanation of how to use the card.
The new home delivery service for low protein foods was
Dr Anita MacDonald has been doing some work with families
very popular with families. It helped many vulnerable or
on weights of exchanges – for example asking them to guesti-
busy patients/families e.g. older people with learning dif-
mate the numbers of exchanges in food portions, calculating
ficulties living by themselves, pregnant women, and people
exchanges from protein values on packaging, and the results sug-
living in remote areas, and working families. Some profes-
gested that a practical session at a conference may be of value.
At the recent NSPKU conference we ran a competition called
sionals may regard this new service as unfair because
‘having a go’ where people were asked to: Guess the exchang-
patients do not have equal access to all products, but the
es of plates of; fat chips, thin chips, baked beans, breakfast
challenge is for other companies to provide an equivalent
cereal, ordinary rice, sweetcorn and potato waffle: Weigh out
service to ease the burden on these families. The current
one exchange of: chips, baked beans and breakfast cereal:Cal-
state system for obtaining low protein foods is clearly stress-
culate, using the ready reckoner card, the exchange value of;
ful and shrouded by red tape. Surely it is time for change,
tinned soup, pouch soup, curried sauce, vegetable pate, toffee
and we dietitians have an important role in helping cam-
sauce, pasta sauce, spaghetti shapes, yoghurt and white sauce.
paign for alternative modern day systems in order to help First of all adults and children alike really enjoyed doing a
our patients. practical session rather than listening and we have been asked
to include more of this sort of thing at conferences in the future.
Overall impression of service: extracted comments of
The children were astonishing and even those as young as four
patients and their carers
were doing the weighing and guessing. Parents who weighed
regularly at home had children who were willing to try and do
‘Excellent, very efficient - get everything I need.’
for themselves. Doing tasks like this may appear intimidating and
‘Easier to get hold of small quantities of new products. The GP
opens up the possibility of exposure and some adults spent a
receptionist does not know what you are talking about. Often long time hunting for spectacles!
told the foods are not on their system.’
Guessing exchanges is hard and some foods such as chips
‘We have never been short of foods since home delivery started.’
and baked beans are harder than others. For fat chips only two
chips was an exchange, baked beans as a single exchange is
‘Very good - saves time having to go to GP, collect prescription 2
a tiny amount. Calculating exchanges using the ready reckoner
days later and then have to take to chemist.’
was helpful. There was one trick entry – a white sauce which
‘Really good for us - out all day working. I can also be forgetful was actually ‘free’. So this kind of activity helped increase
about collecting products from chemist. This new system really variety and will encourage searching in the supermarket for
works.’
good exchange foods.There were queries about mls v grams. Is
‘The picture order form really helps. Gives child choice and
it the same thing when working out an exchange? Answer: yes
responsibility. Wish everything would go on this system. Must save
(except for ice cream.)*
receptionist time at the doctors. Don’t run out of low protein
foods.’
So what did we all learn?
1. It’s hard to guess accurately exchanges by eye-balling and
‘So busy; have two children with PKU. Anything that can be done
some foods are harder to guess than others.
to speed up PKU management is good.’
2. If only a small weight of a food is an exchange it is so easy to
‘Home delivery fantastic. Would love everything on home de-
underestimate the number of exchanges e.g. baked beans
livery. Doctors don’t treat foods as important as they are not a 3. The ready reckoner card is a big help (available from NSPKU)
medicine.’
and with a bit of practice can expand the choice of foods in
‘I always get hassle with the other prescriptions I order.’
the diet.
4. If parents weigh and encourage their child to do this too,
‘No wastage. Saves time; before had to go to GP and chemist
children will soon become confident and good at it and save
at the same time trying to tie up the prescriptions - I spent a lot of
the parent a job.
going backwards and forwards.’
5. It was fun and an easy little competition to set up.
‘Children can choose what they want. Much easier. Less wast-
* Ice cream nutrition information is often expressed as protein per 100ml. It is measured in
age. Go less to GP for prescriptions for other foods but does not volume rather than weight. To calculate the protein per 100g you have to double to protein
stop me getting things the children like.’
value per 100ml. So if it’s 2g protein per 100ml, it will be 4g protein per 100g. This is because
when melted ice cream loses volume (as measured by ml) and 100ml is approximately 50g.
36 NHDmag.com May ‘08 - issue 34
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