NSPKU News & Views...pdf

Spring 2012
Issue 138
Inside this issue...
Rachel’s Story
Editors Report
Letters
Fate Special Foods
NHS Screening
Put Something in
Your CV
E.S.PKU 2012
Conference
Blood-taking –
What a faff
“PKU is part of who I am
but it’s not who I am”
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
and Merchandise Officer)
2, Tarnacre View
Garstang
Preston
Lancashire
PR3 1QH
Tel: 01995-238180
Email: merchandise@nspku.org
News and Views Editors
Pete Bramley
51B High Street
Watton at Stone
Hertfordshire
SG14 3SX
Email: editor@nspku.org
Tel: 01920-830635
and
Caroline Bridges
30 Haydn Avenue
Purley
Surrey
CR8 4AE
Tel: 020-8645-0395
Email:
osbornecaroline@hotmail.com
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
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 Editors Report
2 Letters
5 Fate Special Foods
6 Edale Activity Weekend
7 Dietician's Article
9 Put Something on
Your CV
12 NHS Screening
Programmes
14 E.S.PKU 2012 Conference
16 Rachel's Story
17 Blood-Taking – what a faff
19 Thank Goodness for
Screening!
Donations (inside back cover)
Editors Report...
Hello and welcome to issue 138 of News and Views. For the first time in its illustrious literary history
the magazine has TWO Editors. Yes, count them, TWO. Sadly I am on the re-bound as this is my
second round of editing this mighty tome. My co-editor is Caroline Bridges, a lady with impeccable
breeding and a taste for the high-life. Whereas I am a scouser with impossible breeding and a taste for
West Life.
I have a now 18-year-old daughter who has PKU. She has her eyes fixed firmly on the goal of sailing
through her A-Levels and swanning off to Leeds University dragging sackfuls of our hard-earned cash
with her. It’s such a difficult age for them. She’ll be off inter-railing around Europe this Summer so
she’ll have to dust off her pen when she gets back and relay her frightful tale of travelling mayhem to
you when she gets back. When I was her age I got 1 O-Level, straight up the chimney (no remission),
got bail and for our holidays ,got to sit at the bottom of our garden with a melted ice-pop. How times
change.
Now she’s 18 she has full ownership of her diet – can’t wait to hear how that goes on as she
hoofs it around Europe but I’ll let her tell you that one in a later edition. Caroline, over to you,
maybe you can actually tell the readership about you and something that actually pertains to the
magazine……………………………………….Pete
and Editors Report (CB’s section)
Thanks Pete. Hmm, not sure about the breeding, but the high-life doesn't sound too bad! My PKU
credentials are that my middle daughter, aged 12 years, has PKU. She manages her diet very well
and her consultant gave her the nickname “Miss Perfect Pants”! Her passion is swimming and she's a
member of a club in Croydon. She manages to train for at least six hours per week and competes in
galas all over Surrey.
Which brings me on to one of the new features we are introducing to News & Views – our
“Celebration” section. I'm sure all our children and adult PKUs have achieved some incredible things
in spite of the diet and we'd love to hear about them. Let us know about your superstars, whether
they've just taken their first few steps or graduated with a first class honours degree in Viticulture and
Oenology! We'd love to share their inspirational stories with our readers.
Also in this issue look out for two important dates for your diary:- Edale in July and the E.S.PKU
conference in October. Plus there’s light-hearted look at blood taking and read about Rachel’s positive
approach to life with PKU – and lots more. Enjoy.
Caroline x
Please address all correspondence to the
Editor, “News & Views”,
51B High Street, Watton at Stone,
Hertfordshire SG14 3SX
Email: editor@nspku.org
Tel: 01920-830635
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 273670.
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 Prizmatic Solutions Ltd
http://www.prizmatic.co.uk/
Tel: 01444 236035
Printed by action
Tel: 01444 236204
News & Views Issue 138 Spring 2012 1

Letters &
Special
Thanks
News & Views, 51B High Street, Watton at Stone
Hertfordshire SG14 3SX
Email: editor@nspku.org
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
Further to my previous e-mail I can
confirm that the combined donations on
the two just giving sites has now reached
£2821.25 including gift aid.
Further to this our youngest Daughter
Bethan was Baptised on 20 November.
We requested NSPKU donations rather
than gifts and I am delighted to announce a
further £520 collected from generous family
and friends. These cheques have been posted
to Vicki King.
I've attached a photo from the happy day of
mum, dad (me), Bethan and her god parents.
Keep up the good work.
Andy Muncer
Dear News and Views,
My name is Ceri Wilkins and I am writing to
inform you about a recent event we did for your
charity. My friend Lisa Brough and I set up an 'Evil
Christmas Party' in aid of
NSPKU mainly to raise
awareness and help her son
Joshua Henderson who is
diagnosed with PKU.
Ceri
We applied for an
information pack a
few months ago and
the event was held
on a Saturday night
in Harrogate at the
Regency bar.
I enclose a cheque
for £218.01. We hope this
can help you!
Dear News and Views,
Please find attached a cheque for £100.00 which is
a donation from our company Tuck Shop profits.
My nephew James Huard and niece Charlotte
Leeson have PKU and this is in recognition of all
the support your Society has provided and does
provide in helping the families of those with
phenylketonuria.
Patricia Hak
Credit Controller,
SGS United Kingdom Ltd.
2 News & Views Issue 138 Spring 2012

‘Make Each Meal
An Opportunity’
low protein
…with our range of foods specially developed for your
patients following a Low Protein diet.
Our Sliced Loaf, Bread Rolls, All Purpose Flour Mix, Pizza Base and three different
flavoured Cookies are the ideal ingredients to incorporate into everyday meals.
MADE
FOR
MADE
FOR
MADE
FOR
MADE
FOR
Get the lowdown on our Low Protein recipes!
You can visit our website for up to date
news and delicious recipes or simply
request information and a recipe
booklet by email, phone or post!
0800 783 1992
lowprotein@juvela.co.uk
www.lowproteinfood.co.uk
Juvela, 19 De Havilland Drive, Liverpool, L24 8RN
www.lowproteinfood.co.uk

Eileen Green © ~ Fate Special Foods 2009

Manufacturers HINTS & TIPS
Fate Special Foods recipes
Hello
In this recipe I use a small packet of Walkers cheese flavour Quavers to give the scones a
lovely cheesy taste. The small pack Quavers are counted as 1/2 exchange, (check the label
or ask your dietitian if unsure) This recipe makes 10 small scones, so they do not have to be
counted, (unless you eat them all in one go!) They are lovely as a snack, or served in place of
bread with low protein soup or stew.
The sundried tomatoes that I use are the ones sold in a jar with oil. Just shake off the oil as
you take them from the jar, then snip into strips with scissors.
Method
Pre heat the oven Gas 7, 220°C 425°F
Place the Fate Low Protein All Purpose
Mix into a mixing bowl, and rub in the
margarine until the mixture resembles
fine breadcrumbs.
Fate Cheez 'n
Tomato Scones
Add the
packet
of Quavers and crush and
break them with your fingers
as you mix them in. They
do not have to be very finely
crushed, just make sure they
don’t have too many chunky
bits. Stir in the baking
powder, salt and pepper. Add the strips of sundried tomato.
Pour in the water and stir quickly with a metal spoon until
blended well. It should be a smooth and creamy mixture.
Leave to rest for 1 -2 mins.
Dust the work surface with a little extra Fate Low Protein
All Purpose Mix and scrape the scone mixture out of the
bowl onto it. Dust your hands with a little All Purpose
Mix and smooth and pat
the mixture down to about
3cms thick. Use a small
round cutter (4.5cms
diameter) and cut into
circles. You should get 10
out of this recipe.
Place them onto a greased
baking tray and bake for
12-15mins until risen and golden brown.
Remove to a wire rack to cool.
Serve warm or cold. Can be stored in the freezer, and
when needed defrost and warm through in the microwave.
Ingredients
200g Fate Low Protein All
Purpose Mix
50g block margarine
1 small packet cheese flavour
Quavers (1/2 exchange)
½ tsp salt
Generous grinding black pepper
1 good tsp baking powder
40g sundried tomatoes
(drained of oil and snipped
into strips)
130mls water

EDALE NEWS ACTIVITY AND VIEWS WEEKEND... REPORTS...
Edale Activity
Weekend
July 13th to 15th
2012
It’s that time of year again to be thinking about getting active. There is so much
in the press these days about getting children off the computer and running
around a bit more so what better way to get going than by doing some great
activities in beautiful Derbyshire surrounded by sheep.
The weekend is open to any child with PKU age 8 years to 11years and still in junior
school. All the PKU diet is provided (except the protein substitute) and the food is
great. The children are expected to weigh their exchanges but there will be professional
help on hand. Activities start at 3pm on the Friday but we like you there by 1pm or
thereabouts so that you can get your bed and room sorted out and have a
look around.
The cost is £85 which is half of the
actual cost as the NSPKU helps to
subsidise the weekend. Most children
who go want to go again which tells how much fun
they have. Unfortunately we have to give priority to
children who have not been before but if you do have a
child who wishes to attend again please contact me and
I can explain costs etc.
It’s a great way to make new friends, learn about the diet
and become independent so why not give it a try?
You can ring me (Eleanor Weetch) anytime for more details
on 01226-742494.
6 News & Views Issue 138 Spring 2012

FROM YOUR DIETITIAN...
Dietitian’s Report
ASPARTAME
The parent of a child with PKU contacted me recently about
Britvic’s J20 Apple and Mango Drink. This drink now has
aspartame in it. Her daughter drinks J20 regularly and previously
has been fine as it did not contain the sweetener. All other flavours
in the J20 range are aspartame free.
Britvic have told me that the aspartame will be removed sometime
in 2012 when there is to be further development of this range but
content of aspartame will always be indicated on the nutrition
information on the bottles.
Squashes and Dilutables contain between 45-60 mgs phenylalanine
per 100ml undiluted.
New Sweetener called Stevia
It sounds like someone’s name but this new sweetener is made
from a shrub-like plant from Paraguay. The leaves contain naturally
sweet-tasting substances called steviosides. This sweetener has
been used in Paraguayan cooking for centuries but it was only used
outside South America from the early 1970s. It is now used in
Australia, Japan, New Zealand, USA and at the end of last year
Europe gave it the green light to be used.
Stevia is phenylalanine free so is suitable in the PKU diet. It is
heat stable so can be used in cooking. It is also reported to have
a ‘natural feel’. It is in the shops now and I picked up several
different presentations of it. It will also be used in fromage frais,
custards, yoghurts and soft drinks.
There are 4 companies using it as far as I can see.
Pure Via
However, this comes as a timely reminder to always check the
labels of drinks, even well established ones that you have checked
in the past and which have been OK, as changes are frequently
made. One thing I have learnt as a parent is that children copy
Is presented as little sachets for drinks, cubes like sugar cubes and a
powder for sprinkling.
Silver Spoon – marketed under the name truvia
Presented as a sugar-type of grain in a tub and sachets for drinks.
what you do, both good and the not so good, so if they see you
checking they will learn to do that too. It’s a good habit to get into
and only takes a moment.
I am often asked how bad is it if a drink containing aspartame is
drunk so here is a guide to levels:
Carbonated ‘pop’ type drinks eg Diet Coke 33mgs Phenylalanine
in 100mls
So a regular can of 330mls of aspartame-sweetened diet drink
would provide approximately 2 exchanges
News & Views Issue 138 Spring 2012 7

FROM YOUR DIETITIAN...
Tate and Lyle
now,sadly, the protein is 1.7g per 100g. This means that it would be
60g of buttons for 1 exchange.
It’s just another reminder of the importance of checking labels for
protein content, things do keep changing and it’s important to be
vigilant.
OCADO
A parent has told us that Ocado products are labelled with the
misleading information of ‘phenylalanine free’ on their products.
This appears on foods which would not be classed as phenylalanine
free (or low) such as potato-based foods. I believe that what the
company mean is that the food does not have added phenylalanine
for example a yoghurt with aspartame added. Any food which you
would normally count as exchanges but which has this message
should be treated as you would usually do.
White sugar and Stevia blend. Comes as a white sugar type of
sweetener and brown also.
Hermesetas
Tiny tablets for sweetening drinks
So if you are watching your weight and need a bit of help then
you might like to try this new sweetener. My thanks to Dr Barbara
Broadbent who alerted me to this useful new line.
Tesco Snowies
Although I have asked Ocado about this I have not yet heard back
from them but felt that a warning to look out for this rather than
wait for a response was more important. I am continuing to pursue
the enquiry.
Fruit – Allowed without counting
There are some fruits in the current PINK booklet (2011/12)
which have been left off the list of those which can be taken
without counting in the diet. It is one whole row in the book which
was missed in the proof reading and I am so sorry about this. On
the other hand it’s good to see it has been noticed and queried.
Thank you for spotting this.
So the following should be included in the list of those you do not
need to count as exchanges:
Mangoes
Mangosteens
Melon (all types)
Medlars
Mulberries
Nectarines
These little white chocolate-flavour buttons used to contain only
0.3g protein per 100g and so could be allowed without counting
as exchanges in the diet. However, the recipe has changed and
8 News & Views Issue 138 Spring 2012

PUT YOUR NAME IN LIGHTS...
Put Something on Your
CV and Help Too! –
Get Your Name in Lights!!!
Sometimes it’s hard to build up a CV these
days. It’s impossible to put work experience on
a CV that you don’t have. So why not submit an
article to a Nationally published magazine and
have your name on the bottom of the article?
Imagine taking that to a prospective employer!
You will be fully supported by the editorial and
dietetic staff of the organisation – and we don’t
bite we’re just like you!
something or getting back on diet again?Tell us
the hardest thing about the diet and how you’ve
overcome it (or not) but persevered and the many
more things that you will experience, which will
be helpful to others. I always think if I’m struggling
with something or don’t understand an issue there
will be others out there too and that in itself makes
me feel better!
The new Editors and I are trying to pull together
the next News and Views but we need you to write
stuff. Although I write about new foods to try and
things about the diet which I hope is of help what
would be great is a range of articles about what
you are all doing. It doesn’t have to be very long.
Photos are really nice to attract the eye (make them
sharp and not blurred). If you have difficulties in
producing an article we will be there to help you
out – just phone (see Editors contact details in the
front inside cover of the magazine). We aren’t here
to let you down we are here to help.
So please don’t be shy. The magazine needs you
to succeed – so get those pens out and tell us what
you are up to – your experience and the way that
you have dealt with issues will help other people.
And it’s really nice to see your work in print too –
show it off to your friends and family!!
Pete Bramley and Eleanor Weetch
As is often the case it’s the everyday things which
are helpful and interesting to readers as well as
reports of hurdles overcome, achievements (and not
just academic) and what about the trials of making
News & Views Issue 138 Spring 2012 9

News & Views Issue 138 Spring 2012 11

NHS SCREENING
NHS
Screening Programmes
Celebrating 10 years
of the UK Newborn
Screening Programme
Centre
The UKNSPC
The UK Newborn Screening Programme
Centre (UKNSPC)turns 10years in April 2012,
and we are celebrating by looking back at the
Programme Centre’s achievements and thanking
those that have helped us along the way.
for parents. The pre-screening leaflet ‘Newborn
blood spot screening for your newborn baby’
was last updated in October 2010; this leaflet
answers the what, why, who, when and how for
all conditions screened. The ‘PKU is suspected’
leaflet was also updated in 2010; this leaflet looks
at PKU in more detail answering some of the more
frequent questions asked by parents. Midwives have
let us know that parents find the leaflets reassuring
The UKNSPC is responsible for the newborn blood
spot screening programme. Newborn screening
was introduced in 1969 for PKU, and today
newborn screening is one of the largest screening
programmes in the UK. Each year over 800,000
newborns are screened.Since the introduction
of screening for PKU, screening has been
implemented for four other conditions:congenital
hypothyroidism (CHT), sickle cell disease (SCD),
cystic fibrosis (CF) and medium-chain acyl-CoA
dehydrogenase deficiency (MCADD).
The historical success of the screening programme
has depended upon the diligence and dedication
of many health professionals. When PKU screening
began, there was some national guidance, but the
programme was predominantly sustained by local
enthusiasts, particularly the staff of the screening
laboratories.The introduction of the Programme
Centre has enabled greater collaboration between
screening professionals and has ensured delivery
of an expanding programme to a high standard.
Our 2010-11 annual report highlights some
recent milestones, including mandating the NHS
number on the blood spot card in England to
improve tracking of samples and piloting a ‘failsafe’
procedure that identifies babies that might have
missed screening (www.newbornbloodspot.
screening.nhs.uk/annualreports). Keep reading to
find out about some of the recent achievements in
the PKU programme.
PKU screening
In 2008 the UKNSPC brought together a group
of experts to review areas of the PKU programme.
In particular, they looked at the screening and
diagnostic pathways for PKU and recommended
guidelines for clinical referral of babies with
suspected PKU.A report was produced in 2010 for
the guidance to be implemented in April 2011.
PKU and parent communication
and have helped to answer their questions about
screening.
As well as producing parent information leaflets,
the Programme Centre works closely with parents
of children affected by the conditions. Below,
Caroline – parent of Hannah (PKU, 12 years) –
shares her thoughts on her PKU journey.
“It’s only routine, it won’t affect you.”
Those were the words our midwife used twelve years
ago when she took those precious four drops of blood
from our beautiful new baby girl. We weren’t given
any information about PKU. It was a parent’s worst
nightmare. Fortunately our experience is a thing of the
past thanks to the work of the UKNSPC.
I have been involved with the Programme Centre’s
work from the start as a parent representative.
Drawing on the knowledge and experience of parents,
midwives, GPs, labs, health visitors and metabolic
consultants who are living the screening process day
in, day out, the standards it has set are both credible
and achievable. I feel both proud and privileged to
have been involved in its amazing work.
Caroline – member of the MCADD-PKU
Screening Advisory Board and the PKU Expert
Group
The UKNSPC has produced a range of resources
12 News & Views Issue 138 Spring 2012

... NHS SCREENING
A couple of recent
achievements…
In March 2011, the UKNSPC produced a
handbook for laboratorieson how to implement the
new PKU guidance ensuring a secure care pathway
for the screening process from when the card
reaches the laboratory to the safe clinical referral.
The UKNSPC launched the ‘all screening results
belong to parents too’ campaign in 2010, to stop
theoutdated ‘no news is good news’ expectation
and propose that the Child Health Records
Departments in England send the results of the
screening test back to the parents in the form of
a letter. The main aim of the campaign was to
improve the communication of normal newborn
screening blood spot results to parents, for
recording in the Personal Child Health Record.
What next?
Our key objectives for 2012-13 are to monitor the
PKU care pathway to make sure babies are referred
to clinicians who are familiar with PKU, and
evaluate the PKU programme via data collection.
The Programme Centre also plans to review the
‘PKU is suspected’ leaflet and the clinical referral
guidelines and standards.
One of our most exciting
projects is the development
of a dedicated page on our
website on which parents can
share their experiences of
screening. If you are interested
in taking part, please feel free
to get in touch.
E-mail
uknewbornscreen@gosh.nhs.uk and visit our
website at
www.newbornbloodspot.screening.nhs.uk
News & Views Issue 138 Spring 2012 13

NEWS AND VIEWS CONFERENCE...
E.S.PKU 2012 Conference
Thursday 18th to Sunday 21st October 2012 – Britannia
Adelphi Hotel, Liverpool
Liverpool will provide the backdrop for this
very exciting event. The very name conjures
up images of a glorious maritime history,
world-beating musical heritage, two of the
Premiership’s biggest football teams and not
one, but two majestically different Cathedrals.
It is now bulging with fabulous new shops, buzzing
new restaurants, trendy wine bars, as well as a
world class cultural offering with more museums
and galleries anywhere outside of London. Not
forgetting its inhabitants, of course, who are
famously friendly and will welcome you with pride.
The mainline train station, Liverpool Lime Street, is
ideally located in the heart of the city centre. Virgin
Trains now offer a direct high-speed service from
the centre of London in a little over two hours.
Central Station is a few hundred yards in front
of the hotel and has direct links to John Lennon
(Liverpool) Airport.
Liverpool is a fantastic city break destination and
an ideal choice for this high profile event.
The Edwardian style Adelphi hotel is perfectly
situated on Ranelagh Place at the heart of
Liverpool City Centre. It's excellent location makes
it perfect for visitors to this thriving city and its
high ceilinged rooms carry on the air of a bygone
era when rich industrialists had the hotel built
adjacent to the lucrative transportation train lines
into London.
The 3 star hotel opened in 1914 and has been
a popular city centre destination ever since. It’s
friendly team, who strive to provide excellent
customer service, will greet our delegates upon
arrival and are available at all times to offer tips and
recommendations for your stay in Liverpool.
There are 402 bedrooms at the Britannia Adelphi
Hotel, each maintained to high standards and
reflecting the original Edwardian style of the
building. All rooms have en-suite facilities,
television and complimentary newspapers among
other amenities.
Rooms accessible for delegates with mobility
difficulties can be reserved and the majority of the
hotel is accessible for any delegate with reduced
mobility.
14 News & Views Issue 138 Spring 2012

NEWS AND VIEWS CONFERENCE...
The friendly surroundings of the bar are perfect for
unwinding after a productive conference each day.
As happy hour runs from 12 until 4 each afternoon
and the best sporting events are shown on the bar's
big screen, the atmosphere is always lively and
full of fun and the loyal local clientele are always
willing to chat with you.
Delegates preferring a more laid-back setting for
an evening drink can settle into the lounge or the
residents bar for a nightcap.
Staying active while at Britannia Adelphi Hotel
could not be easier! Spindles Health & Leisure
Club provides delegates with premier fitness
amenities including a heated indoor swimming
pool, fully equipped fitness suite and therapeutic
sauna. Entrance costs have been negotiated
already and it will be FREE to all E.S.PKU
conference delegates. Fleur Hair & Beauty offers
pampering treatments and tempting spa packages
to enhance your stay.
The E.S.PKU 2012 conference programme it-self
will be a balanced blend of both work and play.
High profile world-wide speakers will be sharing
the very latest news in research and developments
within PKU supported by moving stories about
personal PKU experiences and life journeys along
with the ever popular cookery demonstrations.
In addition, a full entertainment programme will
be available both inside and outside the hotel
including a wonderful cultural tour where you will
be able to sample the City’s rich cultural heritage.
For those who wish to
do so there will be a bus
service from the hotel
on the Saturday that
will transport you the
Albert Dock. Several
museums here are free
entry and there are
limited spaces for a city
tour with an unusual
twist! Organised
children’s and young
adult trips will also
ensure that parents can
focus on the speakers,
in the safe knowledge that they will be very safe
and well looked after. Fixtures permitting, Anfield
Stadium, the home of Liverpool FC is among
the likely children’s outings along with a trip to
Spaceport, a futuristic glimpse into the future.
Spaces will be limited and the trips are funded and
free of charge for delegates.
Hope this has whet your appetite and look out for
details of both costs and the programme which will
be featured in the next edition of News & Views.
Make sure that you keep these dates free! It is
going to be a great weekend.
Pete Bramley and Mike Bailey
E.S.PKU Conference Organisers 2012
News & Views Issue 138 Spring 2012 15

NEWS AND VIEWS REPORTS...
Rachel’s Story
“Just a 25 year-old Woman who can’t eat Protein”
When sharing with people that I have PKU and
fully explaining what it all actually means, the
response is usually one of utter amazement that
I’ve managed to grow up, and survive with such
difficulties. And while it’s very nice for people to
sympathise, their understanding of PKU is quite off
the mark.
I think the best way to tackle PKU is by
normalising the situation from the get go. My
parents treated me no differently than my older
sister, which is probably the best thing they could
have done. My sister doesn’t have PKU just like
everyone else in my family and nobody forced
her to have the same diet as me and she wasn’t
deprived either. From a very early age I understood
about my condition, that I couldn’t eat what
everyone else could because protein made me ill, it
was that simple.
Eating out, holidays, parties, family
get-together’s were no different.
We used to go on more camping
and caravan self catered holidays,
so my parents could have better
control over my diet. Going abroad
wasn’t really an option when I
was little but I was never made to
feel like I was any inconvenience
nor did we as a family feel like
we missed out. Dining out it was
a bit more difficult because back
then, vegetarian cuisine hadn’t
really taken off, so if we couldn’t
find anything on the menu then
my parents would just suggest
ordering a few side orders, and
asking for them to be put on one plate. No fuss
or awkwardness was ever presented it was all just,
normal.
Even though my family made everything as
ordinary as possible for me, it didn’t stop kids
noticing I was different, pointing out things about
how my food looked or why I had to eat something
completely different or just staring which I
found hard to deal with. It’s part of growing and
parents can’t hide that from you. I went through
a period in junior school where I wouldn’t eat my
sandwiches. This went on for a while, into high
school. The bread would crumble and I’d have
odd fillings in them which made me a target to be
picked on. I felt so uncomfortable so I just didn’t
bother with them; I’d eat them on the walk home
instead.
When I was in primary school and getting invited
to birthday parties and sleep over’s, I would go but
my mum would make party food that I could have
and explain to the parents what it was about, while
I went and had some fun. I was told I could take
the party bag no problem, but I knew I couldn’t
have the cake and would give to my sister or my
dad, who was more than happy to help me out!
When I reached my early teens I graduated to the
adult PKU clinic. Suddenly I could attend clinics
by myself, I was told that I could relax my diet; I
was informed about what kind of alcohol I could
drink. It was brilliant it was the first time I felt that
I could have a say in what I could eat. I was given a
lot more control in the way that I managed my diet
without the permission of doctors, dieticians and
my parents. Although, this brought up new hurdles,
I felt constantly guilty during clinics that hadn’t
been eating low protein prescribed foods, dieticians
said my diet could be relaxed as grew older but
they weren’t following suit, and I began to feel
like I was a failure if I didn’t try the specialized
low protein foods. The truth was that I’d spent my
whole life using these dietary products that I didn’t
particularly enjoy and made me feel different to
everyone else. I think its important
when you’re a teenager, growing up
and finding your feet that you’re
given room to experiment and try
different foods. I knew that I didn’t
want to completely come off my
diet because it worked for me, it
didn’t interfere with my lifestyle
and I was completely healthy. What
I wanted was to try and find a
middle ground where I could have
a low protein diet but not use the
dietary products, this was especially
important while going through
university. I found that not being
tied down to such a dependency
on prescribed food worked really
well for me in the real world, and I didn’t feel like I
stuck out like a sore thumb.
Now, I’m in at an age where I feel I want to try
more of the dietary foods. I’m confident with who
I am, my PKU and what I like and what I don’t.
The low protein food has a lot more variety now,
better tasting and more readily available. Previously
I would have such battles with GP’s that I gave up
trying but now with the new dietary order scheme
it’s far easier. It’s like picking things from a menu!
For me, PKU hasn’t been an ordeal and now as
young woman I rarely even think of myself as
having PKU. Yes It’s part of who I am but it is not
who I am, which is sometimes hard for doctors and
dieticians to understand, luckily I’ve grown up with
a lot of support from family, friends, doctors and
dieticians which have been a massive contributing
factor for my attitude towards PKU. That doesn’t
mean to say that I haven’t faced my fair share of
challenges, but in my eyes I’m just a 25 year old
woman who just can’t eat protein, it’s as simple as
that.
Rachel White
16 News & Views Issue 138 Spring 2012

NEWS AND VIEWS REPORTS...
This Issue: Blood-Taking – what a faff
I always remember the first time I had to take
blood from my new-born daughter. It’s indelibly
etched on my mind. My thought processes went
something like this…….”Right let’s do this (as a
surgeon must do as he moves on from the pretend
torso onto the real thing)”
You must understand, this was nearly eighteen
years ago and we didn’t have the lovely soft-touch
pens we have now and I’m sure that there are still
people who use old technology that we used then,
but Mama – it looked like something from the
French Revolution that Marie-Antoinette would
wear as a necklace, especially if you are stabbing
your new-born for the first time. You know that
feeling that when you look back everything seems
BIGGER!
This innocuous looking little device looked as
though it belonged in a babies nursery, until you
took the cap off to reveal a 1 metre wide blade
with the words “The Blood-taker” welded onto it by
some ex-shipbuiding welder from the North East
and I’m sure it was hot-riveted to the main body of
the device.
Coupled with the fact I wasn’t yet familiar with
actually holding a baby this was a major, major
pivotal point in all of our lives but it was me that
got first go. Now I kinda knew that there would be
more distress for my little girl if I held her by one
ankle upside down in my left hand and stabbed
her with my right (I am naturally right-handed
you see). I also knew that if I stabbed her too hard
I might shatter her tiny and fragile body. So I did
this………..phoned a friend, No I didn’t do that.
What I did was break into a sweat and started
shaking while my little girl slept.
for the greater good and will determine their future
well-being and shape the course of their lives.
Using this as justification you are now able to do
blood-tests facing away from the child with a thrust
under the left arm, over the shoulder and through
the legs with pin-point accuracy and a beaming
smile at your now newly acquired macabre skills.
And joy of joys we moved on from heels to fingers
and with our new sleek and gleaming “Soft-Touch
Pen” (patent pending) we now have a device that
looks like a scribe AND has no reference to blood
or puncturing anything. The marvels of modern
science – hats off.But we’ve moved on since those
days. Blood tests are no longer demonised. They
have become rarer as she migrates from difficulthood
into expensive-hood but guess what – I’m
still doing them. At 18 my daughter still has Daddy
doing her blood-tests. If you are reading this (and
you know who you are and I know where you
live) you are now aware of the trauma that I went
through having to hurt someone that I really love.
And still, still you give me so much more trauma
because I’ve just had the Barclaycard bill and
you’ve put your Easyjet flights on my flipping
Credit Card. Where’s that stabber.
Disgruntled of Hertfordshire
My wife held her in her arms, I gently took her
little booties off to reveal her beautifully formed
feet and lowered her left foot down onto the soft
cloth my knees and I whispered “sorry” to her
before pressing the device onto the soft wrinkled
heel. And pressed the plunger…………….much like
a navvy would dig a road up with a compressed-air
jack-hammer. All the finesse of a bull-dog trying
to win a darts match. And BOY, did she wake up.
I’m so glad she didn’t utter her first words then,
it would have been heart-rending if her first word
began with an F.
Like many things, the first time was the hardest
both physically and emotionally. However once
you’ve got the hang of it and you can deal with the
sight of your own babies blood (which has got to
be THE most unnatural thing in the world) you
become accustomed to the pain that you inflict on
your little mite as it is short-lived and very much
News & Views Issue 138 Spring 2012 17

PROZERO
a great tasting protein free
milk replacement drink
ZERO PROTEIN
ZERO AMINO ACIDS
=
More freedom
and choice
PRO
ZERO
Available in two great options:
‘ON THE GO’
250ml carton with a straw.
‘HOME’
1 litre carton with a screw cap.
Why not try try some delicious Prozero recipes.
These recipes have kindly been developed and
perfected by Eileen Green, Fate Special Foods.
Prozero can be used to make the following recipes
that are all allowed freely in a low protein diet:
CREAMS 1
Single Cream, Whipping Cream, Double Cream and
Extra Thick Double Cream 1
DESSERT AND CAKE IDEAS 3
Vanilla Ice Cream 3
Strawberry Crush Ice Cream 4
Other Ice Creams 5
Quick ’n’ easy Ice Cream Syrup 6
Hot Chocolate Sauce 7
Sweet Lemon Cream 8
Fruit and Lemon Cream Sundae 9
Pouring Custard and Thick Custard 10
Blancmange 11
Classic Cheesecake 12
Fate Chocolate Brownies 14
Fate Traditional Trifle 15
Panna Cotta with crushed Strawberries and Mango 17
SAVOURY SAUCES 18
Savoury White Sauce and Parsley Sauce 18
Curry Sauce 19
Sour Cream & Chive Dip, Sour Cream & Garlic Dip 20
Peppercorn Sauce 21
Chesie Sauce 22
DRINKS 23
Coke Float 23
Orange Float 23
Frothy Milk 24
Cappuccino 25
Thick Milkshake and Quick ’n’ easy Milkshake 26
Fresh Fruity Milkshakes 27
Please ask your dietitian if you are unsure about using any
ingredients in these recipes.
Recipes developed by Eileen Green, Fate Special Foods.
Don’t forget, there’s so
much more you can do
with PROZERO...
• Simply as a drink on its own
• Pour over permitted cereal
• In tea or coffee
• Flavour PROZERO with
permitted flavourings
www.vitafloweb.com

NEWS AND VIEWS REPORTS...
Thank Goodness for
Screening!
From Birmingham Children’s Hospital
Our annual Christmas party was held this year
on the 8th of January. Please believe me Santa
Claus is busier after Christmas than before. The
party is now 24 years old but each year there
are surprises and very sadly always one or two
children (without PKU) who never make it to
another Christmas party.
Children also enjoyed dancing competitions, games
and each received a mega gift bag stuffed full of
Christmas presents.
All our children have to endure arduous treatments
and anything we can do to bring a little sparkle into
their lives is so worthwhile.
The party is held for 120 children with many
different Inherited Metabolic conditions not just
PKU. Like PKU, all are treated with some kind of
special diet. Although all are born with metabolic
conditions, unlike PKU, for many of the conditions
there is no newborn screening programme, so
many have to wait for symptoms to develop before
treatment is started. All of the conditions are very
serious affecting the brain or other important
organs in the body. Some may be life limiting.
Christmas is a time when food is luxurised/
emphasised – the traditional Christmas dinner
is picture perfect in the magazines and everyone
is allowed a ‘treat’ and it is a time for small
indulgencies. For many of our children the
traditional Christmas meal is totally unsuitable.
Therefore, the Christmas party is a ‘mega’ event. It
is the only party that the children can eat anything
on their allocated table. The food is magical,
children with the same condition sit together
making friends. Both families and children learn
that there are other people with similar conditions.
Of the 120 children who attend the party the most
able and capable are the children who have been
screened early in life to prevent the devastation
of untreated metabolic disorders. In the 24 years
the party has been going there have been gigantic
improvements in the low protein substitutes and
the low protein food is eaten by everybody and
more is wanted.
On reflection let’s be thankful for screening,
thankful for the researchers who have improved
the look, taste and appearance of low protein foods
and protein substitutes. Year on year it gets better,
just like the Christmas party.
A huge thank you to all our sponsors and helpers.
We could not manage without you.
Turn over for a picture of Ben Wilby meets Daniel
This year our theme was Glamour and Glitz, and
we had a special guest appearance from Ben Wilby.
Ben starred in the hit Christmas film Nativity with
Martin Freeman and Marc Wootton when he was
6 years old. Ben entertained the children by doing
a series of dances with his dance partner Sophie
Moseley. The children all loved the music and the
dancing and wanted to join in. Other acts also
followed on:
X Factor Boot Camp finalist, Amy Morris, Body
Beat Dance School and the winners of the 2010
Metabolics Got Talent contest, Sara Ahern and
Roisin McGrath, also all performed for the patients.
News & Views Issue 138 Spring 2012 19

NEWS AND VIEWS REPORTS...
Ben Wilby meets Daniel Booker age 7
20 News & Views Issue 138 Spring 2012

DONATIOMS...
NSPKU
Donations of over £30 for inclusion into News and Views Magazine
Mik Squire & Alister Fraser Joint 50th Barn Birthday Party 40.00
Malcolm Thompson matched funding 250.00
Bridget Flynn 30.00
Anne Owens in memory of Derrick Nicolson 80.00
Linda Spence in memory of Robert Spence 100.00
Mrs Louise Tinley & family 322.22
Andy Muncer and family - Bethan's baptism 520.00
Hannah Bailey - in memory of Eric Tilstone 103.50
Kate Williams - Tanzania walk 1,047.40
(to date via JustGiving £2796.63)
Alison and Mark Sheridan - in memory of Alistair McQuarrie 220.00
Yorkshire Building Society - Small Change, Big Difference 100.00
£