PKU Highs and Lows, the Kellies'

Autumn 2008 – Issue 125
Inside this issue...
Editor’s Report
PKU Pronto!
Dietitian’s Report
PKU Highs and Lows,
the Kellies’ Story
In Touch
The Council of Management
Telephone Helpline: 0208 364 3010
Recorded Information Line: 0207 099 7431
Address: PO Box 26642, London N14 4ZF
Editor’s Report
PKU Pronto!
Bookkeeper’s Report
Fate Christmas Pudding Recipes
11 Dietitian’s Report
PKU is not always easy...
ive Myths about Breastfeeding
and PKU
Editor’s Report...
Mmm, not sure the Thomas’s will be holidaying in the UK next year. Credit crunch and global warming be
damned, we’re getting some sun next July! PKU wise however, it’s easier to stay near home and travelling
anywhere with PKU involves some complicated packing and I must admit I found that a bit of a strain this
summer. Wouldn’t it be nice to just go on holiday and not have to bring your own bread...and cereal...
and milk...and biscuits and, well you know the score. I know I’m being negative but as Viki Kellie points
out in her article this issue, PKU really is a pain in the neck some times and there’s no point pretending
Of course this issue isn’t only about the bad times! Eleanor has discovered yet more lovely food suitable
for the PKU diet and Eileen Green never lets us down with her ideas either! We’ve blasted some myths
about breastfeeding and PKU and there’s yet more recipes to try dotted throughout the magazine.
Next issue however, we’d love to hear from some adults with PKU and we’re hoping to have a story about
PKU in America. It’s fascinating how the exact same condition is handled so differently over there and
there may well be ideas for us in their approach. If any readers have any other thoughts or ideas that are in
any way related to PKU, we’d love to hear from you!
Kiri Thomas,
Please address all correspondence to the
Editor, “News & Views”,
10 Silverdale Road
Chorlton M21 0SH
Tel: 0161 4462396
While every care is taken in the
preparation of “News & Views”, the
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any information given or views
All articles in “News & Views” are
copyright of the Society, and must not
be used without the Council of
Management’s authority.
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News & Views Issue 125
Bookkeeper’s Report...
My first report for News and Views as the
society’s Certified Bookkeeper – very nerve
When I look back over the last three years that
I’ve been involved with the NSPKU, I can see
how the role has changed and grown – from the
first tranche of work to the first meeting with
all the COM members, then the first visit to
Conference, and so on until now I’m handling a
lot of the work that Julia has done for the past
eight years or so – quite a daunting task to have
such a responsibility.
From knowing nothing about PKU previously,
I’ve already learned lots from talking to COM
members, lovely people who I’ve met at
Conferences and reading the News and Views
magazine. I’ve also found out that one of my
ex-neighbours, now a clinical psychologist in
Canada is very much involved with a PKU group
out there, and then I find out that a friend of a
friend’s son has PKU – it’s a small world!
Vicki King
Certified Bookeeper
My grateful thanks to Julia for all the support she
has given me over my ‘settling in period’, it’s very
comforting to know she’s been on the other end
of email!
Vicki King, Tarkwa, 65 Cromwell Road, Ribbleton, Preston, PR2 6YD
Donations over £30
Margaret Burns and Pat Fordham Charity Group
W Bro Ben Aspinall, W Master, Lodge of Remembrance 3787
Colleagues of AM Jeyes, mother of Alicia Jeyes
In Memory of Winnie Dart
In memory of Julia Reynolds
In memory of Angela Kerswill
In memory of Hannah Lawrenson
Simon and Vicky Holman - in celebration of their marriage
Lorissa, Phil, Michaela and Natasha Clemo - Bodmin Ten Tors Walk
Hannah Rycroft - Nan and Grandpa’s party donations
News & Views Issue 125
50.00 150.00 150.00 385.00 50.00 61.55 175.00 203.69 285.00 450.00
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
News & Views, 10 Silverdale Road, Chorlton M21 0SH
Dear News and Views,
Our second son Chester James was born on January 30th 2008 and was diagnosed with PKU 10 days later.
So far he has managed his formula very well and he is still being breastfed.
The Norfolk & Norwich University Hospital have been so supportive and Rachel their dietitian is always
available should we have any issues, particularly now Chester is about to be weaned.
Chester was christened on the 4th May and we decided to hold a raffle for all our family and friends.
Carla, Auntie and Godmother to Chester, kindly arranged a splendid prize from her employers, Warner
Leisure. This was a luxury 4 day spa break in one of their hotels.
We raised £400 which we have great pleasure in enclosing. We are also arranging a
fundraising buffet/dance for October 3rd so hopefully another cheque will be on the
way later in the year.
Though we are still learning how to manage Chester’s diet, we would like to thank
the NSPKU for the guidance and support we have received.
Yours sincerely,
Keven and Kelly Archer.
Chester and his big brother
Dear News and Views,
Please find enclosed cheques (posted today)
totalling £847.25 raised as a result of
completing the three peaks challenge on the
11th and 12th of July this year. The challenge
was actually organised by the Meningitis trust
so the majority of the sponsorship rightly
went to them. It is only due to the kindness
of friends, family and my colleagues and the students at the
John Bentley School, Calne that the remaining sponsorship allocated to the N.S.P.K.U. was so
I have attached two photos, one of me on top of Ben Nevis as evidence
that the sponsorship money was genuinely earned! The second is of my
daughter Ella,9, who has P.K.U. She was the reason for my temporary loss
of sanity as I dragged myself up three mountains without any sleep!
Yours faithfully
News & Views Issue 125
PKU is not always easy...
Many of us with a ‘few years’ experience’ under our belts, manage to feel positive about the phenomenon
that is PKU. Either having PKU ourselves or as parents helping our kids manage the condition, we often
find that life is not only tolerable but indeed very close to “normal”. That's great and the NSPKU exists
solely to assist the PKU community in achieving that stability.
It would be dishonest, not to mention unhelpful however, were we not to talk about the bad times. Not
every family finds it easy. In fact, the truth is that PKU is not “normal” and living with it can be painful
and difficult. I don't think any of us would choose the condition for ourselves or our children. But there
it is, we accept it and work hard to make life with PKU the best we can. Often, we are very successful
and live very happy lives despite the condition. Sometimes though, it's important to acknowledge the
strains and Vicki Kellie wrote to News and Views because she wanted to share her stressful experience
of PKU. Vicki and her husband Roger adore their gorgeous boys but would love to set them free from
PKU. I think we can all relate to that. Here, is the Kellies' story.
Reece and Xander were born at 32 weeks, both
weighing under 4lbs. Their births were stressful
as I was shipped from hospital to hospital and
eventually had to have an emergency caesarean
section in Margate, miles from where we live in
Rye. Not an easy start!
After 3 weeks, the boys were sent to a hospital, still
in Special Care as they were not gaining weight.
This is where I was told – alone – that they had
PKU. Not only this, but I was informed that my
babies were likely to have brain damage because of
this diagnosis. The rest is a blur and to this day it is
unclear to what extent the boys' PKU has hindered
their brain development, especially since, as I'll
explain, their eating was so erratic in their first year.
The boys came home on New Year's Day 2004.
Because of having been fed through N.G tubes,
they had real difficulty feeding and very little
sucking reflex. Trying to get through their
supplement was a struggle and the N.G. tubes were
re-introduced. Then, they developed severe reflux
up to
15 times a day each. They
started falling behind on
the growth charts which
was really worrying so
the tubes had to go. At
this point, the boys
would drink liquids and
eat pureed fruit and
vegetables but this was
shortlived. Feeding
became a real strain
as Roger and I would
spend up to 12 hours
a day trying to get
Reece, Roger and Xander , babies age 11 months
News & Views Issue 125
them to take their supplement. It was taking over
our lives.
By New Year '05 they weren't eating and
hardly drinking. They didn't talk, had very
little understanding and had only just started
walking. Convinced something wasn't right, lots
of assessments were started and at 2 ½ they were
both diagnosed with ADHD and Autism, the
severity of which was unknown until they became
older. They were given placements at a Special
Needs Nursery which would prove to be amazingly
benefical for them both.
However, by now, feeding was once again a big
issue and after much consideration, it was decided
that they would have gastronomy tubes inserted.
So, in July '07, this went ahead. We were worried
that reflux would return as with the N.G. tubes and
while it does now and then, not to the level it did
Reece and Xander have gained weight and got
taller. More importantly, their heads have grown
too. Their behaviour is, however, a problem. Their
lack of understanding means they don't know they
have PKU or understand they should eat. Every
now and then, they'll have a chip or a crisp, but
only one. They are not toilet trained and have a
very set routine which if changed causes real upset.
I can't take them out together as it's physically
impossible. Other than when they're at at nursery
or with respite (every other Saturday for 3 hours),
we have no childcare.
Not a day goes by when I don't think it's my fault
they have all these “difficulties”. We find it hard
talking to PKU families due to the ADHD and
AUTISM and are not in touch with any families
who have Special Needs children. We feel we have
been treated awfully by the system from when I
was pregnant until now although the dietitians,
specialist doctors and nurses we now work with
are very supportive. We've had to fight to get
respite and fight against other peoples' views about
The boys are bright, funny and extremely
handsome! People always say you'd never know
there was anything wrong with them but put them
with other 4 ½ year olds and it is obvious.
This is just a short insight into our family life,
believe me when I say we could write a book!
Reece, Roger and Xander , boys aged 4 1/2
News & Views Issue 125 5
Five Myths about
Breastfeeding and PKU
1. You can't
Breastfeed a Baby
with PKU
Sure, exclusively breastfeeding is not possible
with a PKU baby, but partial breast feeding is
possible and is encouraged. It is ready made, at the
right temperature and contains important special
substances (immunoglobins) which help protect
against bacteria and viruses. Breast feeding helps to
bond mother and baby which can be particularly helpful
following diagnosis.
2. Mixing breast
and bottle
feeding is just too
At first, you will be giving your baby a bottle about
every 4 hours and breastfeeding after the bottle
feed and also whenever the baby wants. This sounds
complicated but really doesn't take long to master.
Very quickly, babies can go hours between feeds and
you can get more sleep! Remember too that dads
can help with the bottle feeding so mothers don't
have to do it all!
3. Babies get nipple/
teat confusion if
you breast and
bottle feed
The beauty of human babies is that they are flexible
in almost every way you can think. Babies born in
a bi-lingual home just learn two languages instead
of one. They can sleep in wooden cribs or on their
mothers' chests, they thrive on breastmilk from
mothers eating a highly spiced diet in India and from
mums in France dining on snails and pate de fois
gras! PKU, in this country, is diagnosed very early
in a baby's life and before they've had a chance to
complain, babies with the condition are being offered
breast and bottle at every meal. No problem!
4. B
means you can
never leave your
baby with anyone
Well, at first you probably won't want to leave your
baby with anyone else, it's likely you'll be tired and
a bit overwhelmed and having a PKU diagnosis
will knock any parent initially. However, the silver
lining comes when you realise that your PKU baby
is absolutely fine with a bottle. This means you can
leave a babysitter with some expressed breastmilk or
even normal formula along with your baby's special
PKU formula. Nana or Grandpa can be confident
that your baby, if she or he wakes, will happily take a
bottle as they do normally every mealtime!
5. B
means eating bland
food and never
having a glass of
First, the bland food issue. Asian food is rarely bland
but do you think generations of women there, for
example, had special diets when they breastfed? Of
course not! Healthy women have, for thousands
of years, eaten a varied diet based around what was
available and what was culturally normal for them
and they didn't stop when they breastfed! But like
any physical activity, if you want to do it well, eating
chips and pies exclusively won't help your cause!
This ties into the old alcohol question. There's
no evidence that the occasional drink will harm
your baby while you breastfeed but going out on
the razzle dazzle probably isn't a good idea whilst
in charge of a baby! So, if you fancy a takeaway
and a small beer now and again, you can enjoy it!
(Remember however, that it's dangerous to sleep in
the same bed as a baby, especially if you've been
I’d just like to thank Caroline Hughes here who worked very hard at breastfeeding her PKU baby Sean and
who very kindly gave us her time in writing about her experiences. She pointed out lots of the information
and tips included above and reminded us how important it is to encourage mothers of PKU babies to give
breastfeeding a go! Thanks Caroline!
News & Views Issue 125
PKU Pronto!
Carrot soup
This soup is so delicious that everyone will enjoy it, PKU or not. It takes a little over 30 mins and after
that you have something fresh and fabulous that will keep for a few days in the fridge or better still, in the
freezer. With fresh low-protein bread, it’s a gorgeous lunch and you could even take it in a flask to work
or school. Here’s the recipe:
For 4 (although I would double this and freeze half)
75g butter
225 carrots peeled and sliced
1 medium onion, finely chopped
Salt and pepper
25g low-protein rice
1 sprig of thyme (if you have it lovely otherwise don't fret!)
700ml water
1. Melt 50g of the butter and stir in the carrots and onions.
2. Season with salt and pepper, cover and cook over a very low heat for 10 minutes. You need to keep an
eye here as butter can burn quite easily although the salt should help prevent this.
3. Add rice and thyme and pour in the water. Bring up to the boil then simmer gently for 30 minutes.
4. Remove the thyme and liquidize the soup – I use a stick immersion blender here straight into the
saucepan and can recommend that as the easiest and safest way to make soup.
5. Adjust the seasoning and stir in the remaining butter if you'd like an even richer taste.
6. A sprinkle of fresh parsley or chervil would look and taste great on top if you have them.
News & Views Issue 125 7
Manufacturers HINTS & TIPS
Fate Special Foods recipes
I didn’t really want to call this recipe Christmas Pudding, because it is too good to eat only
once a year!
It is very easy to make, using Fate Low Protein Cake Mix, and unlike traditional puddings
doesn’t take hours to cook, It can be made and eaten straight away, or made and stored in
the freezer. Just re~heat them in the microwave or oven when you fancy one.
So why keep them just for Christmas?
The pudding basins I use are bought in Tesco, and hold about 250mls.
100g finely chopped apple, preferably Cox’s orange pippin
200g currants
150g mixed dried fruit
1 tsp ground mixed spice
2 tsp ground cinnamon
2-3 large oranges
1-2 lemons
250g (1 packet) Fate Low Protein Cake Mix
50g suitable soft margarine
few drops gravy browning
Pre~heat the oven Gas 5, 190°C 375°F
Place the finely chopped apple, currants, dried fruit, mixed spice and
cinnamon into a mixing bowl. Grate the rind from 2 of the oranges and 1 of
the lemons. Add this to the bowl. Squeeze the juice from the oranges, and
measure 150 mls of juice. Then squeeze the lemons and measure 50mls of
juice. Add this to the bowl. Stir to blend well. Leave to rest for 5 mins.
Add the soft margarine and then add the
packet of Fate cake mix. Stir well for about
1 minute until the mixture is all well
blended together. Stir in a few drops of
browning to give a rich dark colour.
Leave for another 5 mins to rest.
Meanwhile, grease 6 individual pudding
basins about 250 mls capacity.
Stir the pudding again, and make a wish. Then place the mixture into the
pudding basins. Set them into a deep roasting tin. Pour enough boiling
water into the roasting tin to come about a third up the sides of the basins.
Bake in a pre~heated oven for about 35 mins for individual ones. When
cooked, they should be risen and firm.
Eileen Green © ~ Fate Special Foods 2008
Promin burgers are now available in two flavours, Original and Lamb & Mint
and Promin sausages in three flavours, Original, Apple & Sage, and Tomato and Basil
so all the family can enjoy the barbeque
Firstplay Dietary Foods was formed in 1993 to
Lasagna Sheets. By talking with PKU patients,
meatballs or even dinosaurs for the kids! -
produce Promin Low Protein products from a
parents and Dietitians a great range of tasty
they taste great with chips or mixed with
small factory in Stockport, where we only
products have been developed.
some of our pasta. Finish with Rice pudding - 3
produce low protein products which is great
Hot Breakfast - Original, Apple and Cinnamon,
flavours available or a Chocolate and banana
for people on a restricted diet as it minimises
Chocolate, and tasty Banana flavours.
dessert, there’s a strawberry and vanilla one
the risk of contamination. Our original low
For lunch or an evening meal: Pasta Shells in
too. Please call us or visit the website for
protein and gluten free pasta range, includes
Tomato, Pepper and Herb sauce, or Pasta
more information and keep sending your
Promin Pasta and Promin Tri-Colour Pasta,
elbows in Cheese and Brocolli sauce and now
recipe and meal suggestions.
now a well established brand and are available
Spirals in a spicy Moroccan sauce
Firstplay Dietary Foods produce low protein
on prescription. The range also includes
A recent addition is our great tasting Burger
foods especially for your diet.
Imitation Rice, Pasta meal, Cous Cous and
Mix, you can easily shape it into burgers,
Always consult your dietitian before trying something new.
To order telephone or fax: 0161 474 7576, E-MAIL: WEB:
News & Views Issue 125
Dietitian’s Report
What’s for afters?
These individual jellies contain no sugar and are
sweetened with just fruit juice.
This month I’ve been looking at what’s around
in jelly puddings on the supermarket shelves. In
the past most jellies were made using gelatine as
the setting agent. Gelatine is high in protein and
therefore not suitable in the PKU diet.
They come in the following flavours:
But things have changed and recently there have
been some lovely new jelly puddings which are set
with gums e.g gellan, carob, xantham and locust
bean gums and carrageenan. These are all very low
in protein so that’s good news for us.
I am featuring a few of these but do have a
look in the shops yourself. You do not need to
automatically discount jelly in the shops. Check the
labels of jellies for protein content and anything
with a protein of 0.3g protein per 100g is suitable.
As a double check look to see what the gelling
agent is.
Marks and Spencer
These jelly bricks found in the chilled section
contain fresh fruits – pineapple, mango, cherries
and blackcurrants and make a very attractive
pudding. You could serve it in slices with some
sorbet or some of the new SHS dessert ice cream
or fresh or tinned fruit. The jelly is free.
Apple in Blackcurrant Jelly
Pears in Strawberry Jelly
Mandarins in Orange Jelly
Peaches in Raspberry Jelly
They cost £1.28 for 4 little pots. You can find
them on the shelves (not in the chilled section).
They are free.
Asda also do some jelly crystals in orange and
Strawberry flavour. You simply add a sachet to
500ml of boiled water, stir and leave the jelly to set
in 2 hours. I added some tinned peaches to little
dishes to make individual jellies. It made 6 pots of
jelly so good value at 28p for 2 sachets. That’s only
about 2p per jelly.
For a party you could make the 2 flavours and set
in layers. Make them using slightly less water so
that it is a little firmer and add some fruit. Let that
set and then make the second colour and pour over
the first when it has cooled a bit. Two-toned jelly
looks lovely and very clever! They are free.
Fruity Jelly- Flavours are:
Individual Jellies
Also in Marks are individual Raspberry and cherry
Jelly with fruits. Good for the lunch box or as a
special treat. They are also free.
Do individual jellies on the shelves (not in the
chilled section) and the flavours are Peach and
Pear in Tropical flavour jelly and Diced peach in
Strawberry flavour jelly. They are free.
Mandarin segments in mandarin jelly
Peach in strawberry jelly
Pineapple in pineapple jelly
Also Just Jelly in little tubs
Orange Flavour
Great Stuff Jellies
– no added sugar.
News & Views Issue 125
Dietitian’s Report
(Under Other Jelly things!)
Dole also do individual jellies and a Fruit Parfait.
These are free.
Also do a Fruit sorbet which you freeze at home.
You can find these with the jellies and little tubs
of fruits on the shelves, not the freezer, and the
flavours are mango, Strawberry and Mandarin.
Hartley’s are well known for their individual jellies
(but make sure you don’t pick up the sugar free
ones). They are free.
Greens do an Orange and Red Quick Jel. This is
good in a low protein pastry case with some fruit.
These are free.
Other Useful Little
Barbara McGovern told me about some little
mousses in Marks and Spencer. These come in 2
Strawberry and Raspberry 1 pot = 1 Exchange
Lemon 1 pot = 1½ Exchanges
Barbara also told me about a good store cupboard
pudding which is easy to make.
Fruit n’ Jelly Splits are just what they say they are,
jelly on the bottom and fruit on the top. Flavours
Angel Delight
1 packet Angel Delight powder
Peach in layered
Mango and
Pineapple Jelly
Mandarin in
layered Pineapple
and Orange Jelly
Pear in layered
Apple and
Raspberry Jelly
News & Views Issue 125
180ml Rice Milk or low protein milk
Pour chilled milk into a bowl and whisk in the
Angel Delight until light and creamy.
Put in the fridge to thicken for 2 to 3 hours.
80g of this pudding = ½ Exchange
Asda’s Great Stuff. Irresistible Flavour Delight (all
except Chocolate) (You may need a little more
particularly with vanilla flavour)
1 packet of Great Stuff
300ml of cold Rice Milk or Low Protein Milk.
(You may need a little more particularly with
vanilla flavour)
Pour the cold milk inot a bowl. Add the packet of
Great Stuff powder.
ACBS Prescribed Foods
There have been a number of new foods passed for
prescription and many have been re-packaged. The
guide includes all of these new and ‘changed look’
foods. You can see at a glance what’s available.
Make use of them in your diet to add variety and
Whisk thoroughly for 1 minute until light and
creamy. Put in the fridge to set for 10 minutes.
90g of this pudding = ½ Exchange
Branded Foods containing
all free ingredients
Jo Jamieson, mother of a little boy with PKU found
a tinned soup at a local organic food fair which
was very low in protein. It was a Suma Carrot and
Coriander soup.
Listed Ingredients:
Water, carrots, onions, sunflower oil, coriander leaf,
garlic, sea salt,black pepper.
All of the ingredients are free so this soup could be
taken without counting as an exchange.
This applies to other foods like tinned tomatoes
with herbs and onions.
If you are unsure about the listed ingredients take
the food along to your dietitian to ask or you can
send the wrapper to me. The added advantage
of sending the wrapper to me is that I can then
feature the food in News and Views and everyone
can look out for your find!
Coming Soon!
Up-date sections of the Pictorial Guide
Many of you will have copies of the pictorial guide
to the PKU diet. Photographs are so much help
when choosing the correct foods and are useful to
show the pharmacist, grandparents, schools and
Two sections have been up-dated:
News & Views Issue 125
Crisp and Snack
This has been totally re-vamped too.
There is a vast choice of crisps and
snacks and many come in handy packs
providing one exchange. There are
also included some free crisps and
snacks made from cassava or tapioca.
The ones which are free only contain
free ingredients so if you find a cassava
or tapioca crisp which contains Whey
powder or egg or prawn for example it
will not be free.
You will also see from the guide which
are good value for giving the most for
your exchange.
Look out on our web site for the launch of these 2 sections or ask your dietitian who will be alerted to
YES WE availability.
Page 1
Yes We Cook
Specialist Dietary Foods
Freshly prepared PKU ready meals
Available near you*
Would you like…
To open the fridge to a freshly cooked PKU meal, labelled
with the ingredients and exchanges waiting for you?
Yes We Cook That!
To open the freezer and find Spaghetti 'Meat'balls
and Fishless Fingers and Chickless Nuggets,
all with 0 exchanges?
Yes We Cook That!
Yes We Cook That!
To have all this at Supermarket prices?
Yes… it is!
To know that we really understand PKU, really
understand your diet and really know what
exchanges are?
Yes… we do!
To have a birthday cake and know that you can eat it all?
Working closely with PKU dietitians and PKU patients Leanora
Munn and Pauline Young of Yes We Cook now have a
menu of 180 ready meals and snacks all suitable for PKU diets.
All meals are clearly labelled with the ingredients and any
exchanges and are made using only prescriptive flours, egg
replacers, milks and pastas.
Phone Leanora or Pauline on 07773 342594
Our menus are available through your dietician in some
parts of the country or directly from Yes We Cook
Our aim is to supply all PKU people with the opportunity to
purchase ready made meals, breads, cakes and sweet and
savoury snacks at supermarket prices.
*Available now in most of the UK and Ireland.
24 hour answering machine 01290 332 949
Yes We
News & Views
125, 39 Leggate, New Cumnock, Ayrshire, KA18 4NG
NSPKU 36 Annual Family Weekend & Conference 2009
The Rainbow Hotel Torquay
Friday 20th March to Sunday 22nd March 2009
This year’s NSPKU annual family conference and holiday weekend
will be held at the Rainbow Hotel, Torquay. This hotel provides us
with a delightful location to hold our annual event. Our conference
is slightly later this year and the weather on the ‘English Riviera’ by
late March is usually very mild and extremely pleasant.
The hotel is located just 5 minutes walk from the sea front and 10
minutes from the town and harbour.
All rooms are en suite, with TV and hospitality trays. Many have
trouser press / ironing board and hairdryers. There are a variety of
bedrooms at the Rainbow, including family rooms for up to 5
people. Some family rooms have a door leading on to a private
terrace, overlooking the outdoor pool and garden area. Please bear
in mind the rooms that are available will be allocated on a ‘first
come, first served’ basis so early booking is recommended! If
interconnecting rooms are required, please state whilst booking.
Also please let us know if you have any special requirements (other
than the PKU diet).
Supervision of Children:
Whilst the children will be supervised in the crèche, the kids’ club
and outings, it is not possible for the Society or hotel staff to
supervise or be in any way responsible for the children at other
times or places. It is the responsibility of parents to supervise their
Keep fit in the indoor health club, swim in the heated pool, make
use of the mini-gym or relax in the steam room. The evening
entertainment takes place in Club Rainbow, which is the hotel’s very
own nightclub, and available exclusively for the NSPKU.
Meals are served in the attractive Garden Restaurant overlooking
the adjacent park and garden.
PKU Diet:
You will need to bring your own protein substitutes, vitamins and
minerals. The diet will otherwise be catered for. A limited number
of baby foods will be available. If however, your infant prefers
certain foods we would ask you to bring these along with you. The
PKU diet will be catered for from Friday evening to Sunday
lunchtime inclusively. It will not be available for any additional
Torquay is located 30 minutes from the end of the M5 and is well
served by public transport. The station with regular trains from
Birmingham and London is just 5 minutes walk away. National
Express coaches run a regular service to Torquay. Plymouth and
Exeter airports are also within easy reach.
Assisted Places:
There is restricted funding available for those who require financial
assistance with conference fees. Please enquire in the first instance
to the conference organiser who will help you with your enquiry.
All applications will be dealt with in the strictest confidence.
Family Weekend / Conference Fees:
Non-PKU Adult (17 yrs and over) £170.00
PKU Adult (17 yrs and over)
Non PKU Child (5 - 16)
PKU Child (5 - 16)
All under 5’s
Day Visitor Fees:
Non PKU Adults (17 yrs & over) £35.00
PKU Adults (17 yrs & over)
Children (0-16)
Additional Nights:
If you wish to stay an extra night before or after the conference,
please contact the hotel & book direct. We have negotiated a
special rate of £25 per adult (£12.50 child) for Thursday night
and £15 per adult (£7.50 child) for Sunday night including
cabaret. Rates include breakfast.
The NSPKU Conference Organiser is Dave Stening Tel 0207 099 7431
News & Views Issue 125 15
Page 1
NSPKU will be selling two NEW
designs of Christmas cards this year.
Each packet contains 10 cards with envelopes and will retail for £3.00 per packet.
This message inside reads:
With Best Wishes for Christmas
and the New Year
For more information please contact Mike Bailey, see inside front cover for contact details.
News & Views Issue 125
Fruit Tart
Makes 1 portion
115g (4oz) Loprofin Mix
Preparation time: 10 minutes
60g (2oz) Butter
Cooking Time: 15-20 minutes
25g (1 oz) Icing Sugar
Xchange FREE
30ml (2 tbsp) Water
45ml ( 3tbsp) Bramley apple sauce
Serving suggestions:
6-8 segments canned mandarin oranges
This tart can either be served on it own
Or slices of fresh orange
or with a portion of cream or yoghurt.
1 x 4 Yorkshire pudding tin
Chef’ Tip:
emaining pastry can be frozen and used as casing for an
assortment of fillings.
1) Preheat the oven 200º / Gas mark 6.
2)To make the pastry: In a medium bowl rub the fat into flour until it resembles breadcrumbs, make a well in the centre and add the
water, mix with your hands to combine together.
3)Sprinkle the work surface with Loprofin mix, and place on the pastry, kneed for 1 minute. Divide into 4 and roll out each portion
to fit the Yorkshire pudding section in the tin. Slightly prick the base and bake blind in the preheated oven for 5 minutes before
removing to a cooling tray.
4) Spoon the apple sauce into the pastry case.
5) Decorate with mandarin orange segments or slices of fresh orange.
For more great tasting recipes, visit