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East Cornwall & West Devon Network
SUMMER 2020
Photo caption
Have you done MY WALK IT? If so we’d love to hear from you
Back in May, Dani and Shas decided to sign up for My WALK IT. As we always volunteer on the day of WALK IT Plymouth, we don’t normally get to do the walk, so this year we walked roughly the same route as for the 5km with a little bit of a detour on to part of the 10km. Luckily we had great weather on the day and completed 6.69 km which was more than enough for a medal, along with our fundraising of £260.
If you’ve also done My WALK IT we’d love to hear from you so we can share your story and photos. Just email us at [email protected]. And if you haven’t done it yet there’s still time to register at www.crohnsandcolitis.org.uk
/mywalkit.
Crohn’s & Colitis UK East Cornwall & West Devon Network Newsletter SUMMER 2020 Page 2
PLYMOUTH’S PERMANENT PIU
On June 10th, the long-awaited permanent new Planned Investigation Unit (PIU) at Derriford was opened, much to the delight of all those who need regular infusions. The new unit has 8 beds and staff can treat around 70 patients per week. It is light and airy, thanks to features such as the skylight, and is a vast improvement on the cramped and temporary facilities that patients and staff have put up with for the past few years.
Clare from our volunteer team had an Infusion in early July and was very impressed. “I felt totally safe on the ward, all nurses wore full PPE. All Derriford patients are having a pre-assessment Covid Swab Test before attending (I had this on Monday morning at a separate drive through appointment). The new ward is lovely, a permanent place for both staff and patients after years of moving around”.
If you’ve had an infusion at the new PIU and have some feedback, favourable or otherwise, please let us know by emailing us at [email protected]. We’ll be happy to pass your views on to the hospital.
Crohn’s & Colitis UK East Cornwall & West Devon Network Newsletter SUMMER 2020 Page 3
If you have a story to tell about raising funds or awareness locally
then please get in touch at
WE BEARDY GUTS!
‘THE BIGGEST BOOK OF YES’ - TOM’S STORY
We were delighted to hear from our old friend and former volunteer team member Chris Cribbett who has moved back into the area and created a great new blog and Facebook page! Chris describes himself as “a Crohn’s veteran with over 12 years experience of the twists and turns of Crohn’s disease”. And he writes about those twists and turns with terrific humour and a big dollop of self-deprecation! Like a lot of young adults when first diagnosed he made mistakes – “going out on the lash again landed me straight back in hospital” – but he has learned from them and is willing to share for the benefit of others. Whether you’re newly-diagnosed or a Crohn’s veteran like Chris, there’s something for everyone on the Beardy Guts blog! Go check it out now!
Tom Hough, aka The Chronic Adventurer, was thrilled to join 48 other authors in writing a chapter in ‘The Biggest Book of Yes’, a book to inspire others to say “yes” to new opportunities. Tom’s chapter focuses on his Crohn’s Disease and how he turned to adventure to deal with the physical and mental impact of being diagnosed with Crohn’s. Royalties from The Biggest Book of Yes - which has been created entirely by a team of volunteers - will go directly to the Teddington Trust, a charity that offers support to children with Xeroderma Pigmentosum, a rare skin condition characterised by an extreme aversion to sunlight. You can get hold of the book in print and e-book format on Amazon.
Crohn’s & Colitis UK East Cornwall & West Devon Network Newsletter SUMMER 2020 Page 4
LETTERBOXING
ON DARTMOOR
CELEBRATING
THE MAYFLOWER
We’re still selling our letterboxing clue sheets for only £2.50 – have you got yours yet? Our letterboxing stamps this year are based on the 400th anniversary of the Mayflower’s sailing to America. There are 11 stamps to locate and you get 1 with the clues.
You will get to enjoy amazing views like these and you have until March 31st 2021 to complete the walk, an extension agreed by the Dartmoor National Park Authority due to the coronavirus pandemic. To go letterboxing you’ll need a map and a compass, as well as an inkpad and a pad of paper to stamp your finds in. A picnic is an optional extra but recommended! Dartmoor covers 368 square miles so there are no problems with social distancing. Nevertheless, in the current climate, it would be sensible to take hand sanitiser
with you so you can clean your hands after replacing the plastic boxes back in their hiding places. If you’d like an inexpensive day out for the whole family, look no further! Contact us by email at [email protected].
For more information about letterboxing, check out this Dartmoor National Park Authority page.
JACK’S FUNDRAISING UPDATE
You all remember Jack Craigie who has taken on a variety of fundraising activities over the years. In the last newsletter we told you about his 26 Hour Cycle Challenge which he persuaded his Dad, Mike, and Mum, Rachael to join too. Since then both Jack’s parents applied for matched funding through their employers and we’re delighted that Lloyds Bank Foundation has matched all £850, bringing the overall total, including gift aid, to over £1,850!
A HUGE THANK YOU ONCE AGAIN TO THE CRAIGIES!
Crohn’s & Colitis UK East Cornwall & West Devon Network Newsletter SUMMER 2020 Page 5
QUIZ CORNER 50 sets of letters and colours which make up a kind of code. The code represents a well-known phrase, film or book title, song, or something similar. So, for example, Pink P = Pink Panther, and The M Blues = The Moody Blues. If you’re struggling to complete the Colour Quiz, you’ll find some clues underneath. When you’ve finished you can check your answers on the back page.
In our Spring/Summer newsletter we introduced you to
the Number Quiz. This time we have the Colour Quiz,
COLOUR QUIZ CLUES 1. Elton John song
2. Bird
3. Rarely
4. Delighted
5. Procul Harem song
6. Children’s TV programme
7. Dr Suess book
8. Brothers Grimm story
9. 1990 submarine spy film
10. Tongue twister
11. 1939 novel & 1941 film
12. Phrase meaning wealthy
13. Max Bygraves song
14. Puppet TV show
15. US comedy drama
16. 007 film
17. Tom Jones song
18. UK flag on boat
19. Book by Attica Locke
20. Children’s story
21. Rolling Stones song
22. Tom Hanks prison film
23. Roald Dahl book
24. Pudding
25. Jimi Hendrix song
26. Bird or Brownie leader
27. TV series & song
28. Classic children’s novel 29. 1998 US war film
30. Stop motion puppet show
31. 1986 David Lynch film
32. Christmas animal
33. US police TV drama
34. Used to kill a werewolf
35. Breakfast
36. US sitcom
37. Good luck & Alice’s friend
38. 1971 Kubrick crime film
39. Optimistic perception
40. 60’s song by Moody Blues
41. Van Morrison song
42. English heavy rock band
43. Elvis song
44. Rug for someone famous
45. Phone book
46. Santana song
47. 1991 US comedy drama film
48. ELO song
49. San Francisco construction
50. English prog rock band
COLOUR QUIZ 1. G Yellow BR
2. Red R
3. O in a Blue M
4. T Pink
5. A Whiter S of P
6. Blue P
7. Green E and H
8. S White and the SD
9. The H for Red O
10. Red LYL
11. H Green WMV
12. B with a SILVER S in OM
13. Y a Pink T
14. C Scarlet & the M
15. Orange is the NB
16. The M with the Golden G
17. Green Green G of H
18. Red E
19. Black WR
20. The L Red H
21. Brown S
22. The Green M
23. J and the G Peach
24. Lemon MP
25. Purple H
26. Brown O
27. B of Gold
28. A of Green G
29. The T Red L
30. C Green
31. Blue V
32. R the Red-NR
33. HS Blues
34. Silver B
35. FE with Black P
36. The Golden G
37. White R
38. AC Orange
39. Rose TG
40. N in White S
41. Brown EG
42. D Purple
43. Blue SS
44. R out the Red C
45. Yellow P
46. Black MW
47. F Green T
48. M Blue S
49. Golden GB
50. Pink F
Crohn’s & Colitis UK East Cornwall & West Devon Network Newsletter SUMMER 2020 Page 6
ENDOSCOPY
VIDEO
Did you know we have a host of videos on our YouTube channel? Along with lots of our past Facebook livestreams with IBD Nurse Kathy Webb, we have several fun lockdown quizzes with Dani, and a special video made for anyone who wants to learn more about having an Endoscopy at Derriford Hospital. All have subtitles so why not check them out?
WIN £25,000!
Join the Crohn’s & Colitis UK Weekly Lottery for your chance to win the £25,000 jackpot! Each entry costs just £1 and the draw takes place every Friday. For more details and to sign up go to the Crohn’s & Colitis UK website.
Crohn’s & Colitis UK East Cornwall & West Devon Network Newsletter SUMMER 2020 Page 7
HIDDEN DISABILITIES &
SUNFLOWER LANYARDS
Have you heard of the Hidden Disabilities Sunflower Lanyard scheme? If not, read on as you could benefit from it!
If you’re living with Crohn’s Disease or Ulcerative Colitis, travelling and shopping can be quitestressful. People can’t tell that you have a hidden disability and you may feel awkward about asking for help.
The sunflower lanyard is a simple accessory which alerts people around you to the fact that you may need extra support. Those who understand its significance may even have a quiet word with you to see if there’s anything you need.
The scheme is supported by an ever-growing list of businesses including major travel hubs, like Heathrow Airport, and supermarkets like Tesco, Sainsbury’s and Morrisons.
You can find out more about the scheme and buy a lanyard at the Hidden Disabilities website or you can pick one up for free from participating businesses (details on the website).
Researchers and patients from across the UK are invited to take part in Crohn's & Colitis UK's first Virtual Patient and Public Involvement in Research Day on Saturday 17th October 2020.
6 exciting inflammatory bowel disease (IBD) research projects will be presented 10am - 2pm over Zoom. Researchers will be engaging in an open dialogue with patients and the public about their work.
An attendee from the 2019 event commented “It feltempowering for the professionals to be listening to my thoughts and opinions on my care, and to know they would act on the feedback I gave”.
Sign up for your chance to get involved on the Crohn’s & Colitis UK website.
RESEARCH NEWS
Crohn’s & Colitis UK East Cornwall & West Devon Network Newsletter SUMMER 2020 Page 8
1 GOODBYE YELLOW BRICK ROAD
2 RED ROBIN
3 ONCE IN A BLUE MOON
4 TICKLED PINK
5 A WHITER SHADE OF PALE
6 BLUE PETER
7 GREEN EGGS AND HAM
8 SNOW WHITE AND THE SEVEN DWARFS
9 THE HUNT FOR RED OCTOBER
10 RED LEATHER YELLOW LEATHER
11 HOW GREEN WAS MY VALLEY
12 BORN WITH A SILVER SPOON IN ONE’S MOUTH
13 YOU’RE A PINK TOOTHBRUSH
14 CAPTAIN SCARLET & THE MYSTERONS
15 ORANGE IS THE NEW BLACK
16 THE MAN WITH THE GOLDEN GUN
17 GREEN GREEN GRASS OF HOME
18 RED ENSIGN
19 BLACK WATER RISING
20 THE LITTLE RED HEN
21 BROWN SUGAR
22 THE GREEN MILE
23 JAMES AND THE GIANT PEACH
24 LEMON MERINGUE PIE
25 PURPLE HAZE
26 BROWN OWL
27 BAND OF GOLD
28 ANNE OF GREEN GABLES
29 THE THIN RED LINE
30 CAMBERWICK GREEN
31 BLUE VELVET
32 RUDOLPH THE RED-NOSED REINDEER
33 HILL STREET BLUES
34 SILVER BULLET
35 FULL ENGLISH WITH BLACK PUDDING
36 THE GOLDEN GIRLS
37 WHITE RABBIT
38 A CLOCKWORK ORANGE
39 ROSE TINTED GLASSES
40 NIGHTS IN WHITE SATIN
41 BROWN EYED GIRL
42 DEEP PURPLE
43 BLUE SUEDE SHOES
44 ROLL OUT THE RED CARPET
45 YELLOW PAGES
46 BLACK MAGIC WOMAN
47 FRIED GREEN TOMATOES
48 MR BLUE SKY
49 GOLDEN GATE BRIDGE
50 PINK FLOYD
The East Cornwall & West Devon Network has made every reasonable effort to ensure the content of this
newsletter is accurate but accepts no responsibility for any errors or omission. The views of the contributors
do not necessarily reflect the views or policies of Crohn’s & Colitis UK and no reference in this newsletter to
any product or service is intended as a recommendation.
CONTACT US EAST CORNWALL & WEST DEVON NETWORK
Leads: Shas Chilcott and Dani Hooper-Bennett
0300 222 5700 (via Helpline Service)
Website: www.crohnsandcolitis.org.uk/ecwd
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CONTACT FOR LOCAL IBD NURSES
Derriford Hospital, Plymouth
01752 439224 [email protected]
********************************************************
HEAD OFFICE CONTACTS
1 Bishop Square, Hatfield, AL10 9NE
Website:www.crohnsandcolitis.org.uk
HELPLINES 0300 222 5700
Mon-Fri & 9am-5pm (except English bank holidays).
Answer phone service outside these hours.
Charity registered in England Number 1117148
Charity registered in Scotland Number SC038632
A company limited by guarantee in England: 5973370
crohnscolitisuk.ecwd @CrohnsColitisECWD
COLOUR QUIZ ANSWERS
Since coronavirus has hit the UK, our community has needed our support and guidance more than ever. Calls to our helpline have risen by 400% and visits to our website have increased by 600%. If you are in a position to be able to donate,
please donate what you can now.