NSPKU News & Views...pdf

Spring 2011
Issue 134
Inside this issue...
Editor’s Report
Letters &
Special Thanks
Fate Recipe –
Machine Onion and
Herb Bread
Teen Zone
Ed's Recipes –
Cauliflower Risotto
Dietitian’s Report
Santa Visits
Whitethorn Winter
Wonderland
www.nspku.org Helpline: 0208 364 3010

In Touch
The Council of Management
Telephone Helpline: 0208 364 3010
Text Helpline number: 07983 688 664
Recorded Information Line: 0207 099 7431
Address: PO Box 26642, London N14 4ZF
E-Mail: info@nspku.org
Internet: www.nspku.org
Dave Stening
(Chair, MAP Chair &
Webmaster)
Merrywood, Green Road
Wivelsfield Green
West Sussex RH17 7QD
Tel: 01444 471270
Fax: 0845 004 8339
chair@nspku.org
Mike Bailey
(ESPKU Representative)
Scorton Hall Cottage
Scorton, Preston
Lancashire PR3 1AS
Email: merchandise@nspku.org
John McKenzie
(Vice Chair, ESPKU Rep,
MAP Rep)
45 Balmain Road, Kenton
Newcastle upon Tyne
NE3 3QQ
Tel: 0191 271 0464
vicechair@nspku.org
Peter Stockton
(Merchandising Officer)
30a Hillie Bunnies
Earls Colne, Nr Colchester
CO6 2RX
Tel: 01787 223875
nspku.com1@ukonline.co.uk
Anne Owens
(News & Views Editor)
23 Barnfield Cottages
Arundel Road, Fontwell,
West Sussex BN18 0SE
Tel: 01243 544446
Fax: 0845 004 8404
editor@nspku.org
Charlotte Tourgout
(Maternal PKU Support)
54 Goldcroft Avenue,
Weymouth, Dorset,
DT4 0ES
Tel: 01305 770631
charlottetourgout@
gmail.com
Mrs. Eleanor Weetch
(Society Dietitian)
Skiers Spring Lodge
Broad Carr Road, Hoyland
Nr. Barnsley S74 9BU
Tel: 01226 742494
Fax: 01226 742494
dietitian@nspku.org
Eric Lange
27 Western Road
Sutton, Surrey
SM1 2TE
Tel: 0208 643 1758
secretary@nspku.org
Chris Box
(Spring Draw)
13 Govett Avenue
Shepperton
Middlesex
TW17 8AA
Tel: 01932 230317
springdraw@nspku.org
Lucy Welch
(NSPKU Administrator)
PO Box 26642, London
N14 4ZF
Tel: 020 8364 3010
Fax: 0845 004 8341
info@nspku.org
John Skidmore
(Support Group
Co-ordinator)
4 Hall Croft
off High Street
Normanton
West Yorkshire
WF6 2DN
Tel: 01924 890991
supportgroups@nskpu.org
Iain Williamson
45 Cyprian Rust Way,
Soham,
Ely, Cambs.
CB7 5ZE
Tel: 01353 724912
iain@PKUteens.co.uk
Sarah Lawson
45 Balmain Road
Kenton
Newcastle upon Tyne
NE3 3QQ
Tel: 0191 271 0464
conference@nspku.org
Vicki King,
Tarkwa,
65 Cromwell Road,
Ribbleton,
Preston,
PR2 6YD
bookkeeper@nskpu.org
Julie Wilson
59 Coopers Green
Bicester, Oxfordshire
OX26 4XJ
Tel: 07830 452322
juliekaywilson
@googlemail.com
Local Contacts
Bristol & Bath
Katherine Senior,
20 Eastfield Avenue,
Weston, Bath
BA1 4HQ
Tel: 01225 469878
kathsenior@talktalk.net
East Anglia
Jo Savage
2 Snowdonia Way
Huntingdon
PE29 6XP
Tel: 01480 413221
London & Home
Counties
Chair - Caroline Greasby
15 High Oaks Road
Welwyn Garden City
Herts., AL8 7BJ
Email:
pkusupport@tiscali.co.uk
Newcastle
Ken Dodsworth,
7 Lingey Lane,
Wardley, Gateshead,
Tyne & Wear NE10 8BR.
Tel: 0191-469 3424
Portsmouth and District
Nigel Martin,
79 Strode Road,
Stamshaw,
Portsmouth,
Hants. PO2 8PX
Tel: 01705 644341
Reading and District
Nicola Cragg,
13 Blomfield Dale,
Binfield Bracknell,
Berkshire,
RG42 1FY
Tel: 01344 305312
Sheffield
Gillian Race,
Liaison Nursing Officer,
(Health Visiting),
Neonatal
Screening Laboratory,
The Childrens Hospital,
Sheffield S10 2TH
Tel: 0114 271 7415
South Wales
Ifona Rogers,
9 Pant Glas
Pentyrch,
Cardiff CF4 8TB
Tel: 029 20 890065
Helpline
number:
0208
364
3010
Sussex
Sue Greenhalgh,
48 Pinehurst, Burgess Hill,
West Sussex RH15 0DQ
Tel: 01444 242788
sue.greenhalgh
@airservicesuk.com
Yorkshire
John Skidmore
(Support Group
Co-ordinator)
4 Hall Croft
off High Street
Normanton
West Yorkshire
WF6 2DN
Tel: 01924 890991
supportgroups@nskpu.org

Contents
1 Editor’s Report
2 Letters & Special Thanks
5 Fate Special Foods
– Machine Onion and Herb
Bread
8 Whitethorn Winter
Wonderland
11 Ed's Recipes
– Cauliflower Risotto
12 Dietitian’s Report
6 Teen Zone
– Moaning Minnie
– Adult Outdoor Activity
Weekend
Editor’s Report...
Hi Everyone
This issue introduces “Moaning Minnie”, a delightful read in the TEEN ZONE – enjoy, I certainly did!!
We have received a lot of very generous donations recently for which we are extremely grateful. For future
reference though, could you please send cheques to Vicki King, our finance lady, rather than me as I don’t
have anything to do with money matters. You will find her address on the inside front cover of every
magazine.
I am sure you are all looking forward to another great conference in Liverpool in March. Unfortunately
due to work commitments, I won’t be able to join you there, so please send me loads of photos and other
interesting stuff for the next issue.
Regards
Ed
Please address all correspondence to the
Editor, “News & Views”,
23 Barnfield Cottages, Arundel Road
Fontwell, West Sussex BN18 0SE
Tel: 01243 544446
Email: editor@nspku.org
While every care is taken in the
preparation of “News & Views”, the
Society cannot be held responsible for
any information given or views
expressed.
All articles in “News & Views” are
copyright of the Society, and must not
be used without the Council of
Management’s authority.
The National Society for
Phenylketonuria
(United Kingdom) Limited,
PO Box 26642,
London N14 4ZF
Company No. 1256124.
Charity No 273 670.
Helpline: 0208 364 3010
Email: info@nspku.org
Web Site: www.nspku.org
Registered address:
‘Merrywood’ Green Road
Wivelsfield Green
West Sussex
RH17 7QD
Layout by The Keystroke Mill
www.keystrokemill.com
Tel: 01444 236035
Printed by action
Tel: 01444 236204
News & Views Issue 134 Spring 2011 1

Letters &
Special
Thanks
News & Views, 23 Barnfield Cottages, Arundel Road,
Fontwell, West Sussex BN18 0SE
Email: editor@nspku.org
Dear News and Views,
I will be forwarding a cheque for
£100.00. Back in July myself and
2 wonderful friends Sharon and
Jacquie decided to have a joint
40th birthday party! We each have
two daughters. We decided to ask
our friends not to bring gifts but
instead to donate to charities close
to our hearts. Everyone was very
generous, and I chose NSPKU for
my third of the donations. One of
my daughters Ella who is 11 has
PKU, she is doing very well. We
had a wonderful night and all
our girls surprised us with dance
they had made up for our party,
and took to the mic to thank
everyone for their donations!
Here is a photo of the girls in
their glad rags! from the left Anna (Ella’s sister )
Emily, Isobelle, Ella, Katie and Charlotte.
Many thanks for all your good work.
Yours sincerely
Wendy Roberts
Dear News and Views,
Thank you for the excellent Winter edition which I have
just read.
I am the mother of a lovely, sparky two year old boy with
PKU. Although we manage Alexander's diet well and
Alexander is thriving, I have always hoped that in the
future a medical treatment will be available which will
free him from the constraints of a PKU diet. I'd like to
think that one day he will be able to go to a restaurant
with friends without worrying about what he can eat,
have a couple of pints of beer, go travelling without a
suitcase full of supplements - and all the other things
that most people take for granted. I don't think these
freedoms are trivial to a person's quality of life.
However, from what I have read in recent News and
Views articles, I am concerned that there is a major
risk that Kuvan will not be properly funded through
the NHS and that future treatments will also not be
offered through the NHS due to cost restraints. With
the squeeze on public finances I am worried that the
outlook is not very rosy. Dr Vijay's article in News and
Views brought across this point very strongly. PKU is
such a rare disease that the cost of developing treatments
are very high. On the other hand, the low protein diet is
successful and cheap and the NHS may decide its a "good
enough" option for PKU patients and the high costs of
new treatments such as Kuvan are not worth paying
except in very rare cases.
Dr Vijay's article concluded that "Continued support
from clinical teams, sustained lobbying by patients and
the NSPKU will be crucial in ensuring that patients
with PKU in the UK benefit from new developments in
treatment". I want to make sure that our voice gets heard
- new treatments for PKU are WORTH PAYING FOR. A
lifelong, very restricted, low protein diet is NOT a good
enough option if other alternatives are available.
How is the NSPKU lobbying the NHS for proper funding
for Kuvan? I'm not an expert and I simply don't know.
Can we as individuals do anything to ensure Kuvan and
other treatments get funded? I'd really welcome more
focus on this issue in News and Views and from other
PKU patients/parents.
Many thanks
Kate Learoyd
News & Views response to the letter above:
The Medical Advisory Panel of the NSPKU, members
of which have been involved in trials of Kuvan, is doing
what is feasibly possible to obtain the drug for patients who
would benefit by meeting Government health officials and
advising on those patients who would gain most benefit. The
hospitals involved in those trials have not had success in
gaining funding for selected patients in spite of trying hard to
do so. In essence, the UK funding bodies are not convinced
by the long term scientific evidence to support the use of
Kuvan, and it is proving difficult to counteract this no matter
what is said or done.
In the current economic climate effects are being felt on
the funding of existing treatments; funding of diet for life;
appropriate and adequate protein substitute and low protein
foods; home delivery and choice of foods allowed and this
of great concern, and whilst the Society is doing what it
can to ensure all suitable and effective present and future
treatments are available to UK residents our work has to be
rationalised, prioritised and be realistic with the limited time
and resources the charity has at its disposal.
The NSPKU is a charity and is only as good as its
members. This means it is down to all of us, not just the
small committee and extremely pressured health care
professionals to bring PKU into the public domain. It is up
to the membership to get PKU known about and publicised
too. Contact with the media can play a part. It is a good
idea to actually write a story for the media (to ensure the
facts about PKU are correct). This kind of publicity is likely
to reach a wide audience and journalists are always good
at presenting a dramatic story but this, unfortunately, is at
risk of causing upset to individual families. Alternatively,
individuals can consider lobbying their own MP.
The NSPKU’s resources in time and money are small but
by collective effort a voice can be heard. The Society was
recently involved in a BBC1 programme about a family with
PKU children but we also need your help and involvement.
Most people remember the heel prick test which is a very
good starting point in raising awareness of the condition and
you can talk about what it means to have PKU. So don’t
leave it to someone else – what can you do to publicise PKU
and its effective and best treatment?
Your suggestions and actions are awaited.
2 News & Views Issue 134 Spring 2011

The treatment of phenylketonuria varies for each individual patient. No
patient should alter their own treatment as a result of reading how another
patient manages their diet without first consulting their doctor or dietitian.
Dear News and Views,
I have just read an article about PKU in a news letter
dated 2006. I have just read about Douglas Perry and
his holiday abroad. I remember Douglas from about 30
years ago when I was a student nurse on Lilacs ward,at
Borocourt hospital. I did a care study on him as part of
my training. I remember him so well and was really taken
in by him! a little angelic boy with a mother that was
totally devoted to him. I remember the daily diary she
kept on him and his special diet.
I would love to e-mail her or send her a letter to share my
memories. Do you know how I could contact her? I sure
she would not remember me though.
Thank you
June Lewis
Dear News and Views,
I am very pleased to enclose a cheque for £75 for the
NSPKU. This amount was raised from a raffle held at
the SW Family Update Day for PKU on Saturday 22
November 2010, organised by the Regional Metabolic
team. Many thanks to our sponsors who contributed the
wonderful prizes.
Yours Sincerely
Diana Webster
Dear News and Views,
I am delighted to enclose a cheque for £1000 from the
Co-operative Group to help the good work being carried
out by yourselves.
I personally asked for this consideration from the Cooperative
Group, for which I work, following on froma
charity fundraising evening held in London during
September, and as a result over 50 charities/good causes
have received a donation to assist them in making
peoples’ lives better in the future.
I trust you will be as pleased as I am that the group are
making this generous donation to your goodselves.
Kind regards
GD Beckett
Dear News and Views,
Please find enclosed a cheque for £300 for the NSPKU.
This sum of money was raised recently when my wife
and I decided to have a joint 65th birthday party. The
guests donated £145 to the charity, we also held a raffle
in which the guests bought along raffle prizes. This raised
another £79 bringing the total to £224.
A big thank you to the generosity of the guests.
We have made this up to £300 as our personal thank you
to the NSPKU who unbeknown to them have helped
us greatly over the past 35 years. This is because we live
on the Isle of Wight and feel so isolated as we do not
know any other people on the island with PKU due to a
confidentiality rule in the NHS.
So our PKU daughter has never had the opportunity to
share her experiences or even a meal with anyone with
PKU except when we have managed to go to a PKU
conference which was many years ago due to health
reasons. Our only contact with other PKU’s is by reading
the magazine, so thank you once again for keeping us
informed and making us realise that we are not alone.
Yours faithfully
Arthur and Shirley Jackman
Dear News and Views,
Please find enclosed a cheque for £75 which was donated
by my son’s class teacher, Mrs M Williams, Ysgol Gymraeg
Teilo Sant.
Both my children, Ifan (age 4) and Awen (age 2) have
the condition PKU. Instead of sending Christmas cards
recently, Mrs Williams wanted to support the NSPKU.
Many thanks for all your hard work.
Yours Faithfully
Wendy Davies
Dear News and Views,
I am writing to see if you might like some
happy baby news for News and Views.
I am 35 years old, with classical PKU and
gave birth in August to my lovely son - he
is healthy and well.
I am including a photograph of us, plus
a bit of information if you do want to
include it in a publication. I am also
happy to correspond with other pregnant patients to
share my experiences, via email which you may publish.
My name is Elizabeth Roper (born Elizabeth Parrott), and
this is me and my son, Laurie. I have classical PKU and
before and during my pregnancy my allowed exchanges
increased from just 3 grams of protein (when I never
wanted to see another sweet potato again), to 33 (when I
was able to enjoy yoghurts, grains and some cheese).
Laurie is a very bonny and happy baby and I wish to
send my heart felt thanks to my husband, Simon for his
creative cooking and to Suzanne Ford and Helena Kemp
at the Bristol PKU clinic for all of their advice and
support.
Hope that is of interest!
Best wishes to all at NSPKU
Elizabeth
News & Views Issue 134 Spring 2011 3

NEWS AND VIEWS REPORTS...
Eileen Green © ~ Fate Special Foods 2009
4 News & Views Issue 134 Spring 2011

Manufacturers HINTS & TIPS
Fate Special Foods recipes
Hello
Last year Panasonic changed the models of their bread machines again. I’m glad to say the programmes which
are used for Fate bread haven’t changed. The new models of machine are SD256 and SD257. If you need any
more information about the new machines, just contact me.
My recipe this time is a savoury bread which is easily done in the machine, but if you don’t have a bread
machine, you can make up the recipe by hand and prove and bake it in the oven.
The bread is very tasty and perfect for sandwiches or serving on its own simply spread with butter. It’s also
delicious eaten with any low protein soup.
For ease, I use canned fried ‘Eazy’ onion, available in large supermarkets. It gives the loaf a lovely flavour.
Note that you use less water and oil than usual in this recipe; it’s just because the canned onion contains a
little oil and adds moisture the bread.
FATE MACHINE ONION
AND HERB BREAD
Method
Take the bread pan out of the machine and place the kneading blade (paddle) onto
the shaft in the base of the pan. Warm the bread pan by filling it about half way
with hot, not boiling water. (from the warm tap is fine). Leave the pan to warm
while you collect and prepare the ingredients.
Plug the machine in and select the Basic, Bake Rapid programme. Also select the
XL size of loaf, and Medium or Dark crust. It should show 1:55 (for medium) or
2:00(for dark) on the display.
Empty the water from the bread pan. The pan should now be nice and warm.
Measure the oil in a baby’s bottle and pour it into the warm bread pan.
Measure the warm water and pour it onto the oil. Add a couple of drops of
browning if liked, to lightly colour. Add the ‘Eazy’ onion and the sage, thyme and
parsley. Next, add 2 tsp salt.
Empty the full pack of Fate All-Purpose Mix into the pan, and then pour the sachet
of yeast onto the top. Do not stir or mix in. Place the pan into the machine and
press start.
If necessary, use a non metal spatular to carefully scrape down the excess Fate All-
Purpose mix from the inside of the pan, to prevent a ring of uncooked mix being on
the outside of the loaf. Close the lid.
DO NOT LIFT THE LID.
When the machine bleeps at the end of the cooking time, switch off the machine. Using a cloth,
carefully take out the bread pan, and turn the loaf onto a wire rack to cool.
If the paddle is still inside the base of the loaf, leave it until
the bread is cold and remove it by just gripping it with your
fingers and pulling it out. Do not use
anything that will scratch the paddle.
When the loaf is cold, wrap it in foil, cling film, or place it
into a plastic bag or suitable container. It will stay fresh for
a couple of days. Alternatively, the loaf can be sliced or cut
into chunks and stored in the freezer.
Ingredients
500g Fate Low protein
All-Purpose Mix
Sachet yeast
(enclosed with the Fate Mix)
2 tsp salt
30mls oil
400mls warm water
2-3 drops suitable gravy browning
150g canned fried
‘Eazy’ onion
¼ tsp dried sage
¼ tsp dried thyme
1 tsp dried parsley

TEEN ZONE...
Hia!
These pages are for young people to have their say. Send us
your stories and we will give them Pride of place here!
My name is Minnie – Moaning Minnie to be exact. It’s not my real name, but I was ‘christened’
Minnie after my Dad said I moan too much. I don’t know where he gets that idea from, but I
thought I would put my moans to good use, and use this new section in the magazine to vent to
you all. If my Dad is right, I’m sure you will soon get annoyed with me, but here it goes!
Firstly, a bit about myself. I’m 17, have classical PKU. (I don’t really know the difference
between classical and not classical, but I’ve been told classical is what I am). I have 8
exchanges, which is good compared to a lot of other people with PKU (so I’m told), but
ruuuubbish when I want hash browns AND baked beans for breakfast. I love cooking, which I
suppose is a good thing, but also love eating which I suppose is not so good (for my levels, or my
waistline). I’m at college, I dance loads, and do the usual – listen to music, hang round with my
friends. My friends know about my PKU and aren’t bothered about it really, well, after they have got
the usual annoying and difficult questions out the way. (but I’ll save that moan for next time).
It was my best mates sweet 16 last weekend, sadly MTV wasn’t involved, just the usual cricket
club/labour club deal; rubbish DJ, the cha cha slide, the drunk dad dance, and buffet full of
chicken tikka sandwiches, sausage rolls and crab sticks. I go for my friend, of course, not for
the dads or high protein goodies. My parents were worried about what I would be eating so tried
to send me with a packed lunch – a low protein fairy cake, a low protein bread roll, and a pot of
vegetable ratatouille (!) I’m surprised they didn’t want me to take my scales too the way they
packed me up. I declined as politely as I could (in the circumstances), and promised them I would
make do. “there will be salad and pickles, and I’ve saved my exchanges for the crisps and potato
salad! Plus, I will look like a geek with a lunchbox, I can see it now ‘oh she looks nice tonight,
but that clutch bag doesn’t go with her outfit.. oh, wait, it’s not a clutch bag it’s a LUNCHBOX...
full of ratatouille!!’Slightly melodramatic, but you never know (maybe I should be Melodramatic
Minnie instead?). So, off I go, clutch bag, not lunchbox in hand, looking forward to a night of cha
cha slides and the Macarena. I gave the birthday girl her present, met up with friends, and had a
little boogie (putting the toddlers and dancing dads to shame of course). Just as I was admitting
to a friend “this DJ isn’t that bad actually”, the music stopped and a drum roll played, “ladies and
gentlemen, the buffet is nowwww open!”. The usual rush and push took place, and casually I
joined the back of the queue looking forward to potato salad and some carrot sticks. It didn’t
quite turn out that way, because of course my parents were right (why are parents always
right?!). There were no crisps, the only salad on the buffet was a cherry tomato garnish, and the
potato salad had been replaced by tuna pasta! ‘Oh sugar!’ (or words to that effect) I thought,
picked up 3 cherry tomatoes and sat down. They looked very lonely on my very big plate, and as
everybody else was tucking in, I couldn’t help but think of my low pro lunchbox at home. Note to
self: parents are always right, and lunchboxes beat near starvation any day.
Till next time,
Moaning Minnie
Minnie
xoxo
6 News & Views Issue 134 Spring 2011

TEEN ZONE...
Adult Outdoor Activity Weekend in Keswick
Dietetic Department
Royal Hospital for Sick Children
Dalnair Street
Glasgow G3 8SJ
(18 years and Over)
0141-201-0163
January 2011
sarah.adam@ggc.scot.nhs.uk
Hi
The trip to Keswick last year was another great success so we have booked another weekend with Derwent Hill Outdoor Education and
Training Centre for the 20th – 22nd May 2011.
If you have not been before, it is great fun as last years group will testify to. We have used the centre for many years and we are
confident about the safety of the activities and also that the accommodation and food is very good.
The cost per person is normally £175 but all we ask you to pay is £50. This covers 2 nights accommodation, all your meals, organised
outdoor activities and the travel to and from Keswick. There is en suite accommodation, twin bedded rooms with TV and coffee-making
facilities. All meals are included and are mainly low protein. There is a cosy lounge area and a small kitchen for our use. Alcohol is
available at an extra cost from the small bar.
The plan is:
• Stay at the centre Friday 20th May to Sunday 22nd
• Have 1 day of outdoor activities on the Saturday
• Sunday morning for team low protein cooking
• Opportunity for talks and group discussion about managing the diet
• Leave the centre around mid afternoon on the Sunday.
There is a range of activities including canoeing, kayaking, sailing, windsurfing, gorge descents, rock climbing, abseiling, hill walking, orienteering
and ropes course. All group and personal equipment will be included. See the centre website for more details: www.derwenthill.co.uk
The food will be prepared by the chef at the centre and all you would need to take would be the protein substitute you are currently on.
There will be dietitians and company representatives also at the weekend to offer support and advice.
Transport to and from Derwent Hill will be organised from Glasgow, Newcastle and Bradford. If you are not from either of these places
and you would like to join us we ask if you can organise your own transport to Penrith and we can collect you there.
If you would like to go please complete the enclosed slip and return to me at the above address as soon as possible. We have a
maximum of 20 spaces available and they will be offered on a first come first served basis.
Please do not hesitate to contact us if you wish any further information or to chat about the plans for the weekend.
Yours sincerely
Sarah Adam
Metabolic Dietitian
I would like to come to the weekend away at Keswick on 20th – 22nd May, 2011
Please find enclosed full and final payment of £50 - cheque made payable to: Metabolic Activities Fund – 776902
Name: .........................................................................................................................................................................................................
Address: ......................................................................................................................................................................................................
Tel:................................................................................................... Email: .................................................................................................
Name and contact details of your Dietitian: ...............................................................................................................................................
....................................................................................................................................................................................................................
News & Views Issue 134 Spring 2011 7

NEWS AND VIEWS REPORTS...
Whitethorn Winter Wonderland
Had my charity day Whitethorn Winter
Wonderland and am happy to say I raised 300
pounds for the charity . I am happy to write an
article if you are happy to accept it , I have also
enclosed a few pictures of the day. Cheque to
follow.
Hello everyone My name is Ally Johnston I am a
28 year old girl with PKU. As we all know having
PKU can be difficult to live with especially if you
are only allowed 4 1/2 exchanges a day like me. It
has affected my life significantly I remember when
I was younger having to go to birthday parties with
special buns and dont even get me talking about
the lovely supplement medication. Dont get me
wrong nowadays the medication tastes much better
but it did not always taste as good the dreaded
Albumaid was vile!!!!
Although having this condition affects our lives
we should never let it hold us back from doing
what we want to do in life. Infact having PKU
myself drove my inspiration to become a nurse.
My mum obviously looked after my diet etc very
closely when I was young and at this stage in life
strict diet and medication is crucial. I owe it to
my mum for the person I have become today love
you Mum. I have to admit when my mum handed
the responsibility to me of looking after my own
diet I didnt do such a good Job! I just got married
last year and am hoping to start a family of my
own soon so my diet is now well under control. I
have my levels checked twice weekly and take my
supplement medication religiously.
After high school I did my 'A' levels and then went
on to do nursing at Queens at which I achieved a
2:1 Honours degree in Adult Nursing. Currently I
am working as a staff nurse in a hospital close to
my home and really enjoy it, it has its bad days and
good days but overall its generally good. Through
my experience of working in the healthcare setting
I have realized that not a great deal of people
know much about PKU, therefore I decided to do
a small bit to change this, this is were the idea for
Whitethorn Winter Wonderland came about.
Whitethorn Winter
Wonderland is a charity
Santa's Grotto that I
decided to arrange
at my own home
to raise funding
and awareness
of this condition. Many
women remember their
child having the heel
prick test at birth but
never really asked
what it was for! This
event took place on
Sunday 12th December
52 children were meant
to attend in two different
time slots, however due
to sickness of some of the
kiddies only 42 were able to
attend. The day started off a bit
manic because all the children
were so eager and excited
8 News & Views Issue 134 Spring 2011

NEWS AND VIEWS REPORTS...
that they all arrived together bang on time for
each allocated slot. When they arrived they were
greeted by our friendly elf aka my stepson Bradley
who gave them a candycane each. The children
were then escorted into the gazebo for face
painting , Christmas nails and hair colouring.
The Gazebo was lit up with Christmas lights
and snowflakes designs, in here was cocoa cafe
where yummy mince pies, shortbread, hot
chocolate, tea and coffee were provided.
All these culinary delights were served
by Mrs Claus my mum. When santa
arrived it was time for all the children to
come out to the garden to see him in
his grotto. One by one they went
in, some happier than others
to see him. During this time
we had a snow machine
and Christmas music
on in the background.
Each child was given
the opportunity to tell
Santa what they wanted
from him and receive a
small gift. All children
were also given a bag of
candyfloss so you can guess
we had a bunch of hyper
kids but the atmosphere
was amazing I loved every
minute of it.
8pm the day went absolutely brilliantly and we
raised £300 pounds for NSPKU. To end the day
we lit a sky lantern and all the children sent a
Christmas wish to Santa.
Would like to just give a special mention to all
those who helped me arrange this day and make it
so special for the kids
Santa Claus: Raymond Wilson ( My Stepfather)
Mrs Claus: Kay Wilson (My Mum)
Nails: Glamour Nails by Gail Brennan
Face Painting: Ashleigh Gladwell
Hair: Joanna McCullough
Tickets and other donations: John Graham Printec
Candyfloss and Other donations: Ross Nicholl
Original Candyfloss Company
Snow machine: Kaleidoscope events
Also thank you to my husband and my stepson
for helping me get everything organized and to all
those who attended !!!
Yours Sincerely
Ally Johnston
Enclosed are a few Photos of the big day, enjoy!
All in all we had two time
slots 4pm-5:30pm and 6pm-
News & Views Issue 134 Spring 2011 9

Tasty Recipes with...
Savoury Biscuits
Ingredients
• 90g (3½ oz) Loprofin Low Protein Mix
• 1x 17g pkt cheese flavoured Quavers,
crushed
• 1.25mlsp (¼ tsp) Loprofin Egg Replacer
• 1.25mlsp (¼ tsp) paprika pepper
• 1.25mlsp (¼ tsp) salt
• 50g (2oz) hard margarine
• 2x 15mlsp (2tbsp) Loprofin PKU Drink
Oven temp: 200ºC/400ºF/Gas Mark 6
Sponge Cake
Ingredients
• 50g (2oz) hard margarine or economy
butter, at room temperature
• 50g (2oz) caster sugar
• 1x 5mlsp (1tsp) vanilla essence
• 115g (4½oz) Loprofin Low Protein Mix
• 1x 5mlsp (1tsp) Loprofin Egg Replacer
• 1x 5mlsp (1tsp) baking powder
• 100ml (3½floz) Loprofin PKU Milk Drink
Oven temp: 190°C/375°F/Gas Mark 5
Method
1. Combine all dry ingredients in large bowl. Cut margarine
into small pieces and rub into the dry ingredients, until
texture resembles breadcrumbs.
2. Stir in sufficient Loprofin PKU Drink, to attain soft
manageable dough.
3. Transfer dough to work surface dusted with Loprofin
Low Protein Mix and knead for 30 seconds, until
smooth
4. Roll out dough to 0.5 cm (¼ inch) thickness and cut into
rounds, using 6cm (2½ inch) cutter, liberally prick
surface of each biscuit with fork.
5. Place rounds on greased baking trays and bake in
preheated oven for approx 8 mins, until crisp and just
starting to brown. Cool on wire rack.
6. When cold store in airtight tin.
Makes 12 biscuits
Method
1. Lightly grease a 17.5cm (7”) round sandwich tin and line
with non stick/silicone paper
2. Place margarine, sugar and vanilla essence in large
bowl, beat for 1-2 mins until light in texture and
creamy coloured.
3. Thoroughly mix together Loprofin Mix, Loprofin Egg
Replacer and baking powder, stir into creamed mixture
alternately with Loprofin PKU Milk Drink, until soft
smooth batter is achieved. Do not overbeat.
4. Transfer mixture to prepared tin and level surface.
5. Bake cake in preheated oven for 15 mins, until wellrisen
and firm to touch. Cake will be very pale colour.
Cool in tin for 5 mins before cooling on wire rack.
6. When cold cake may be split and sandwiched with jam
or buttercream, top iced or dusted with icing sugar.
Makes 1 sandwich cake/4-6 portions
Additional Tips
Optional Flavourings to be added at stage 3:
1. Grated rind 1 small orange
2. Grated rind 1 small lemon or lime
3. 1x 5mlsp (1tsp) coffee granules,
dissolved in Loprofin PKU Milk Drink
4. 1x 2.5mlsp (½tsp) sweet spice
(mixed spice, nutmeg or cinnamon)
Loprofin... the best in Low Protein
visit www.lowproteinliving.co.uk for more information

NEWS AND VIEWS REPORTS...
Ed's Recipes
Cauliflower
Risotto
We love Jamie Oliver’s food in our house and were so pleased to find this
recipe. With a few changes, Kylie created a superb “free” meal for herself.
The recipe feeds 6 so there was plenty to freeze – and it froze really well!!
Whiz the bread in a food processor with a dash of olive oil and the chillies. Heat
a frying pan with a splash of oil and fry the flavoured breadcrumbs, stirring and
tossing constantly until golden brown.
Trim the coarse leaves off the cauliflower and cut out the stalk. Chop the nice
inner part of the stalk finely. Start making your risotto, adding the chopped
cauliflower stalk to the pan with the onion and celery and the cauliflower florets
to a pot of hot stock.
Cook the cauliflower florets, stalks and celery till quite soft. Add them and some
of the stock to the cooked rice in a pan, crushing them into the rice as you go.
Continue until all the vegetables have been added.
Ingredients
2 handfuls of stale low protein bread, torn into pieces
3 small dried red chillies
extra virgin olive oil
1 cauliflower
low protein rice cooked in vegetable stock
a handful of chopped fresh parsley
sea salt and freshly ground black pepper
1 onion chopped
2 stalks celery chopped
vegetable stock for boiling veg
knob of butter
fresh parsley chopped
Add the butter, stir in the parsley, taste and season. Sprinkle with the flavoured
toasted breadcrumbs and serve. So, so good!
News & Views Issue 134 Spring 2011 11

FROM YOUR DIETITIAN...
Dietitian’s Report
ALL THINGS
‘CHEESEY’
The idea to do something about cheese flavours
and substitutes came about from being contacted
by Redwood Foods about the launch of some new
flavours of their Cheezly. They are doing a special
offer of 20% off their postal service of obtaining
the Cheezly and details of the company are
included at the end of the article.
Cheezly can also be bought in supermarkets and
Health Food shops and if your local shop does
not stock it you can try asking them to do so.
Demand for a product is helpful to both seller and
consumer.
CHEEZLY
The melting slices come in 100g packs
The protein contents are all very similar except for
the Mature White Cheddar Style and the Mature
Red Cheddar Style which are a bit lower.
So Mozarella and slices, Cheddar and slices, Edam,
Pepper Jack and Blue Cheese
20g = 1 exchange
And Mature White Cheddar and Mature Red
Cheddar
30g = 1 exchange
What to do with the Cheezly?
There are now 7 flavours of Cheezly:
Edam Style
Mozarella Style
Cheddar Style
Mature White Cheddar Style
Mature Red Cheddar Style
Pepper Jack Style
Blue Cheese Style
They all come in 190g packs
There are also 2 styles which are produced in slices
and are ‘super melting’. These are:
Cheddar Style Slices
Mozarella Style Slices
You can use the Cheezly in low protein
sandwiches, baguettes, pitta bread, crackers, in
toasties on jacket potatoes, pizzas, vegetables
(broccoli, cauliflower, leeks, celery, fennel and
really any vegetable you like). You could dice the
Cheezly and use in a salad, melt into a home-made
low protein white sauce or a free one from the
shops eg Dolmio White lasagne Sauce, for use with
pasta or in lasagne, in savoury tartlets. The melting
varieties will probably work best in the cooked
dishes but try them and if you have a recipe or idea
please let me know so that we can share it.
Mail order from:
The Redwood Wholefood Company Ltd.,
Redwood House,
Burkitt Road,
Earlstrees Industrial Estate,
Corby,
Northants
NN17 4DT
12 News & Views Issue 134 Spring 2011

SHS Recipes
NEW YEAR,
NEW WEBSITE!
low protein
We are delighted to launch our new website:
www.lowproteinfood.co.uk
You will find many delicious yet
simple recipe ideas from ‘Everyday
Basic’, ‘Make It Tonight’ to ‘Puds
and Treats’- who said a low-protein
diet is boring? Find out more from
our ‘Recipe Page’.
Register with us online to be
entered into the FREE PRIZE DRAW.
Ten lucky winners will be
selected at random to receive a
£20 Marks and Spencer voucher.
(Terms and Conditions apply)*.
New!
Recipe Books…
We now have 2 fantastic recipe
booklets available to you! Just
New!
contact us to get your FREE copies.
Contact Us:
0800 783 1992 / 0151 432 5314
lowprotein@juvela.co.uk
www.lowproteinfood.co.uk
Juvela, 19 De Havilland Drive, Liverpool, L24 8RN
*TERMS AND CONDITIONS: The winners will be selected at random from the entries and entries must be received within 30 days of the publication of this
issue. If you have already registered, you will automatically be entered. Winners will be notified by email. Prizes are non-exchangable and non-refundable

Loprofin
the best in Low Protein
Great Range – Great Taste
For over 10 years, we have provided great choice and
variety with our wide selection of products to improve
the quantity and quality of low protein meals and snacks.
To view our entire Loprofin range, which includes bread,
mix, milk replacer, biscuits, pasta, crackers and cereals, or
to access some great tasting low protein recipes, please
visit www.lowproteinliving.co.uk
Don’t forget, all our Loprofin products can be delivered straight t
to your door by our home delivery service – SHS Homeward.
Call 08457 623 605 for further information.
To receive a free Low Protein basic starter pack
please call 08704 201423
Nutricia Ltd. Whitehorse Business Park, Trowbridge, Wiltshire BA14 0XQ tel: 01225 751 098

FROM YOUR DIETITIAN...
Dietitian’s Report
Cont...
Tel: 01536-400557
Email: info@redwoodfoods.co.uk
The company have offered a special price of £1.57
per pack (normal retail is £1.96). Ask for the
order form and delivery charges, as these vary on
amount ordered.
Free & Easy Dairy Free Cheese
Flavour Sauce Mix
make a really nice Macaroni ‘cheese’ this way.
1 small packet Quavers = ½ exchange
Cheese Flavoured Savoury
Sauce- Home made
Ingredients
250ml Prozero milk or Loprofin milk
25g Butter
15g Cornflour
1 x 17g Pkt Cheese flavoured Quavers
The whole recipe is ½ an exchange
Method
1. Put the low protein milk, cornflour and butter
into a saucepan and bring to a simmer whisking
all the time with a balloon whisk
2. Crush the Quavers as described above and add
the crumbs to the hot sauce.
This powder is available in supermarkets and
Heath Food shops too. You make it up with cold
water but you could also use your low protein
‘milk’ for a creamier sauce.
100g made up sauce= ½ exchange
Low Protein White Sauce
and Quavers
3. Beat well with your whisk until the Quavers
have dissolved into the sauce. Add some freshly
ground black pepper to season.
4. If the sauce is a bit too thick add a little more
low protein milk.
Bisto Cheese Sauce
This sauce mix has been around for a long time
and by all accounts from talking to dietitians
it is popular. It can be made up following the
directions on the pack and 50ml provides ½ an
exchange.
However, there is another recipe which makes
more and would be good for the macaroni cheese
or where you want more sauce.
Ingredients
150ml Prozero milk
2 tsp (10g) Cornflour
10g Butter
15g Bisto Cheese sauce powder (1 exchange)
You can make a white sauce following the recipe
below or you can use a jar of Dolmio white lasagne
Sauce. Take a packet of Quavers and open the top
a bit to let in the air then take your rolling pin or
anything fairly heavy and non-breakable and crush
the Quavers into little pieces. Stir this into the
heated sauce for a lovely cheese sauce. You can
Method
1. Put all the ingredients in a saucepan and whisk
with a balloon whisk.
2. Keep whisking as the sauce heats and bring to a
simmer when it will have thickened.
News & Views Issue 134 Spring 2011 15

FROM YOUR DIETITIAN...
Cheesy Feet Biscuits
I got this idea from Nigella Lawson. In one of
her cook books she talked about all the different
biscuit cutters she has – over 100 of them and what
took my attention was a cutter in the shape of a
foot. She used this to make cheese biscuits. What
fun. So I went to a good cook shop and asked if
they had feet cutters. They did, in both big and
small feet sizes. So I made some savoury biscuits
using SHS Loprofin flour – recipe below- to make
big and little feet cheese biscuits. I marked the
separation line for the toes with the back of a knife
as this makes them look even more like feet. They
were such a hit in clinic on Monday. It’s a bit of
fun and something a child might like to do and I
have to admit I loved making them and showing
them to the consultant working in my clinic. He
was really dismayed to discover I had given them
all away by the end of clinic. Sometimes it is little
fun things like this which can engage a child and
adults too!
and burn (little sun burnt feet- not good). Cool
on wire rack.
6. When cold store in airtight tin.
Makes about 20 little feet.
The whole recipe gives ½ exchange so provided
you don’t eat all 20 feet you do not have to count
them.
Pure ‘cheese spread’ and slices
This cheese substitute is available again in
supermarkets and Health Food shops. I found both
varieties in Morrisons.
The slices come in 10 slices per pack.
Ingredients
90g Loprofin Low Protein Mix
1 x 17g pkt cheese flavoured Quavers, crushed
finely
1.25mlsp (¼ tsp) Loprofin Egg Replacer
1.25mlsp (¼ tsp) Paprika pepper
1.25mlsp (¼ tsp) salt
50g (2oz) Hard Margarine
2x 15mlsp (2tbsp) Loprofin PKU Drink
Oven temp: 200°C/400°F/Gas Mark 6
Method
1. Combine all dry ingredients in large bowl.
Cut margarine into small pieces and rub into
the dry ingredients, until texture resembles
breadcrumbs.
1 slice = 1½ exchanges
The Pure Soft and Creamy Spread comes in tubs
of 200g
Spread 40g = ½ exchange
You could try melting it into hot pasta or a jacket
potato.
and for a really quick cheesy meal don’t forget
FirstPlay Dietary Foods ltd
Promin Pasta in Sauce:
Cheese and Broccoli Flavour
1 sachet = 1 exchange
2. Stir in sufficient Loprofin PKU Drink, to attain a
soft manageable dough.
3. Transfer dough to work surface dusted with
Loprofin Low protein Mix and knead for 30
seconds, until smooth.
4. Roll out dough to 0.5cm (¼ inch) thickness and
cut into feet, liberally prick surface of each foot
with a fork.
5. Place feet on greased baking trays and bake in
preheated oven for approx. 8 mins, until crisp
and just starting to brown. Be careful not to
leave them in too long or they will go too dark
16 News & Views Issue 134 Spring 2011

FROM YOUR DIETITIAN...
Dietary information Booklet
2011/12
The new diet information booklet is now printed
and there are a few things I need to tell you about.
We had some more foods analysed for
phenylalanine content recently. We can now add a
new vegetable to the ‘free’ list which is really nice
in a stir fry. Baby sweetcorn can be eaten without
counting as an exchange. Baby sweetcorn is the
little cob which is no bigger than a finger. It is
NOT sweetcorn kernals in tins or corn on the cob.
Sweetcorn kernals are 35g = 1 exchange and corn
on the cob is 55g or 4cms length. This is important
to know the difference – see the photo.
Kara Coconut ‘milk
This is not the tinned coconut milk used in cooking
for curries which is quite creamy but it is in the
long life milk section or the ‘free from’ section in
the supermarket. It is in 1 litre cartons. You can
use it in custards, cereals and for sweet sauces.
Kara Coconut milk 100ml = 1 exchange
Pearce Duff’s Chocolate
Blancmange Powder
Betty Crocker Rich and Creamy
Icing Chocolate Fudge & Betty
Crocker Buttercream Style Icing
Chocolate
We have always known the fruit and vanilla
flavours were very low in protein but our analysis
has shown that the chocolate flavour is ‘free’ too.
You can make a blancmange with low protein milk
or you can make some chocolate flavoured custard
with it too. Delicious on low protein sponges,
stewed fruit or tinned fruit (pears go very well) or
on its own.
Both of these icings should be counted as
100g = 1 exchange
This is quite a lot of icing and it takes about 150g
to 200g to cover a cake. Small amounts taken on
a slice of cake may not need to be counted but the
number of exchanges everyone is on is different so
you should check with your dietitian about how
you should count it.
News & Views Issue 134 Spring 2011 iii

//
mr promin’s
lunch box logistics
NOW
AVAILABLE ON
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Sum Total = more tha e ough s ax & cakes
to fill a week of lu ch boxes
are available in
four fantastic flavours
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