north west midlands cystic fibrosis centre autumn/winter...
TRANSCRIPT
1
North West Midlands Cystic Fibrosis Centre
The Team have been busy over the Summer months promoting the North West Midlands
Centre service and fundraising and it looks as though you have all been busy too! As a Centre
we are encouraging you to become part of the development of the service and you can be
involved in as much or as little as you like. The Centre is developing a website and we are
welcoming your thoughts on the content: http://northwestmidlandscfcentre.btck.co.uk
If you would like to contribute to the next edition, please contact Erin Hodgetts, Cystic
Fibrosis Coordinator on telephone 01782 675105 or email [email protected].
Autumn/Winter 2014/15
Page:
2. Your Team News
3. Hospital Integration
New Children’s Centre in Shropshire
4. Special Recognition Award
European CF Conference
MPs Visit Specialist Centre
Raising Awareness
5. Clinic Audit
We Need You!
Did You Know?
6. Nebuliser Servicing
Please Bring You iNeb to Clinic
Do You Need Your Nebuliser?
EpiPen Reminder
Have You Had Your ‘Flu Jab
7. High Cost Drugs
Festive Foods
8. Future Events
11. Christmas Fundraiser
Fantastic Fundraisers!
12. Contact Information
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Most of you will have noticed that our Cystic
Fibrosis Coordinator has a different surname! Erin
got married in July to Bobbie Hodgetts and we
wish them all the best for the future!
Omi Narayan secured a
a position within the
R respiratory and Cystic
Fib Fibrosis Department at
Bir Birmingham Children’s
H Hospital.
• Bernard Cheng is taking
up a Pharmacy position in London.
• Sue Hope has
left the Trust
on a career
break, the CF
Service will
always be
grateful for
her hard work
and support.
Dr. Senthil Kumar Sethuraman has recently joined the children’s CF team
at Shropshire. He has had tertiary respiratory experience in Birmingham
Children’s Hospital and experience in a New Cross Hospital managing 50
children with Cystic Fibrosis and difficult asthma.
Dr. Ang Ho has recently joined the Children’s CF Team at Stoke. He
started as a respiratory grid trainee for the Yorkshire Deanery and finished
his training in 2007. His experience in CF includes working at the Regional
CF Unit at St James's Hospital (now in Leeds General Infirmary) and also at
the Children's Hospital in Westmead in Sydney, Australia. Ang was
appointed as Consultant in Paediatrics at Macclesfield Hospital and led
the respiratory and CF services there from 2007 to 2014 as well as a
Clinical Director for East Cheshire NHS Trust. His special interests include
general respiratory conditions, bronchoscopy, sleep-related disorders and
allergy. Research and published papers include subjects on
Pseudomonas eradication and induced sputum in CF. Ang is married and
has 2 girls aged 7 and 10 years old. His hobbies include photography,
cycling and now has repaired knees hopefully a return to racket sports
and football.
3
On 2 November 2014 the University Hospital of North Staffordshire
will be named University Hospitals of North Midlands NHS Trust. It
will be a single Trust with two hospitals of equal importance - one
in Stafford and one in Stoke-on-Trent.
It will incorporate the activities of the current University Hospital of
North Staffordshire NHS Trust (UHNS) and most of the activities of
the Mid Staffordshire NHS Foundation Trust (MSFT). Some of the
services provided by MSFT will transfer to the Royal
Wolverhampton NHS Trust.
The Trust will include services and teams at Stafford and City
General (in Stoke) hospitals, with the hospitals renaming to
become the County Hospital (Stafford) and the Royal Stoke
University Hospital (City General). Your Cystic Fibrosis Teams will
stay the same and the site you attend will also stay the same.
Email contacts will also change and you will be notified of the
new addresses in due course.
On 29 September 2014, saw the opening of the new Children’s
Services in Shropshire, which will bring huge benefits for children
and families with cystic fibrosis. Whilst the children’s ward in the
Royal Shrewsbury Hospital has now closed to overnight
admissions, the new children’s ward at the Princess Royal
Hospital, Telford, has state of the art new facilities. There are
fabulous large en-suite rooms for all and much better clinical
rooms, play and education facilities. From September 29th, any child requiring an overnight
stay will be cared for in this ward. The new Children’s Out-patient Department and the
Children’s Assessment Unit at the Princess Royal Hospital are now right next door to the new
Children’s Ward.
Although we are sorry to say “goodbye” to the Children’s Ward at
the Royal Shrewsbury Hospital, we will say “hello” to a greatly
improved Outpatients Clinic, housed in the old Children’s Ward,
and a new Children’s Assessment Unit in the main hospital (on
Ward 21 – follow the signs from the main entrance!). So children
from Shrewsbury and the West of Shropshire and Powys will still
come to clinics at The Royal Shrewsbury Hospital, and be able to
start IV courses there.
Any questions about what this all means for you just speak to any of the CF Team.
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Midlands Children of Courage 2014 Winner Ewan Smith is a 16 year old
young man who was diagnosed with Cystic Fibrosis at an early age. In 2012
he underwent a double lung transplant due to severe lung disease caused
by Cystic Fibrosis. Against all the odds, Ewan completed his GCSEs this year
and has achieved six C grades and 3 D grades. The school have described
Ewan as an inspiration and recognised his commitment to his education,
even when he was unwell. Ewan has also competed in the British
Transplant Games in Bolton this Summer where he won 4 bronze medals in
swimming and bowling. Ewan also regularly fundraises for the CF Trust and the Freeman
Hospital. To find out more about Ewan and the Midlands Children of Courage awards, please
visit http://www.midlandschildren.co.uk/winners2014.php
Professor Warren Lenney, Dr Fran Gilchrist, Dr Omi Narayan, Dr Sushil Agarwal,
Siobhan Davies, Ana Ireland and Wendy Dale attend the 37th European
Cystic Fibrosis Conference in Gothenburg, Sweden.
Siobhan, Dr Narayan and Dr Gilchrist presented a poster on the Paediatric
Hand Held Record for which patients from the Centre were involved in the
development of the record. The record has received interest from around
the world .
MP Mr Tristam Hunt, Stoke Central Labour, (pictured left with
Professor Warren Lenney, Clinical Director) and MP Ms Joan
Walley, Stoke North Labour (pictured right with Lauren Sewell,
Technical Officer) visited the Specialist Cystic Fibrosis Centre at
Stoke. The Team educated the MPs in relation to what CF is and
walked through the patient pathway
as an outpatient and inpatient. The
MPs also met and talked to both adult and paediatric patients.
Mr Hunt and Ms Walley heard about the Centre’s developments
and challenges and they are supportive for the cause. The
Centre’s profile was also raised in the local paper, The Sentinel.
Members of the CF Team occupied a stand at the
InTu Potteries Shopping Centre, Hanley to promote
the service as well as fundraising via the tombola.
Shoppers from Stoke-on-Trent were interested to
find out more about CF and the service which has
helped boost charity funds and support.
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Erin Hodgetts is looking at ways to improve the clinic experience for patients
who attend their routine CF appointments at the University Hospital of North
Staffordshire. She is looking at clinic start times and waiting times between
each professional. Patients have been sent an audit sheet with their clinic
appointment letters and Erin would be grateful if they could complete the form
and hand it in to a CF team member after your clinic appointment.
The North West Midlands Cystic Fibrosis Centre
is committed to developing a first class service.
We would benefit from patient involvement to
help us shape the services we provide. We
would like a group of enthusiastic patients and
family members who are willing to take a little
time to review patient and public information
documents/leaflets, website material, help
with fundraising events and public speaking.
Your involvement is vital to service development and can be rewarding for you. You may
benefit from gaining new skills such as editing, presentation skills, general communication skills
making people more employable too.
You may need to attend the hospital once in a while and access to a telephone and email
would be essential. Travel expenses will be reimbursed for attendance at meetings/giving
presentations.
If you are interested in being involved in any aspect of the service developments or would like
further information, please contact Erin Hodgetts, CF Coordinator, on either:
• Phone: 01782 675105
• Email: [email protected]
…is the amount it costs if you have missed an appointment and failed to
notify us. The CF service would have also lost a clinic slot which another
patient could have used.
…is the cost of one Tobramycin syringe driver. If you forget to bring
the syringe driver back to the hospital after you have finished your IVs,
it is delaying the start of another patients’ treatment. We do not have
the funds to be able to buy replacement equipment if they do not get
returned.
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If you use an iNeb, please remember to bring your device to your routine clinic
appointment so that the data can be downloaded.
If you have a nebuliser that you no longer require or have more than one that you
are not using, please could you return them?
Please remember to make sure if you have an EpiPen, that it is in
date. An EpiPen is vital for when you are on IV antibiotics. If you
need another, please ask your GP to prescribe.
Patients with CF need the ‘Flu jab every year. Contact your GP in to book
an appointment. The Pnuemmoccocal Vaccine is needed every 5 years.
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Please contact the Cystic Fibrosis Office on 01782 675105 or email
[email protected] at least 1 WEEK before your routine clinic appointment in
order for the prescription to be prepared and ready for collection on the day of
your appointment. The high cost drugs are: - Tobramycin – Promxin – Colistin –
Aztreonam - DNAse/Pulmozyme
Here are a few ideas of the nutritional content of some of our favourite
festive foods. This may help you and your family keep a healthy weight
during the festive period. The photos show examples of high and low
calorie meals for starters, main meals, desserts and snacks at Christmas.
The nutritional information may also help you to look at the fat content of
the foods to allow you to adjust the number of Pancreatic enzymes (e.g. Creon) you may
need for these foods.
Starters
The difference between these is
221kcals and 11g fat.
The difference between both the meals is
133kcals and 11g fat.
Main Course
The difference between these meals is 367kcals and 29g fat
Desserts
The difference between these meals is
586kcals and 25g fat.
The difference between these is 490kcal and
28g fat.
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Snacks
The difference between these is 220kcals
and 17g fat.
The difference between these is 184kcals
and 26g fat.
RECIPES WANTED!!!!!
As you know we are building a website and I would like to get some good
tried and tested high calorie recipes on there for everyone to see. So
please if you have any recipes for e.g. super smoothies then please send
them to the CF TEAM! [email protected]
Date Event Location Contact
5th until 7th
December
Open from
10.00am - till
6.00pm Friday
and Saturday.
Sunday from
11.30am -
6.00pm.
Christmas Tree Festival
Get into the Christmas Spirit
and join us to see the wonderful
Christmas trees on display.
Entrance fee is £1 for adults
and children and disabled is
free.
Saturday (6th December) will
be a Christmas Fayre and
Santa's Grotto will be open
from 11.00am and 1.00pm and
on Sunday between 3.00pm-
4.00pm there will also be an
organ recital in the church hall.
Holy Trinity
Church, High
Street,
Wordsley,
Stourbridge,
West
Midlands,
DY8 5RU
For more
information
call David on
07810 462616
6 December
7.30pm til late
Charity Night
Join us for a night to remember!
Disco, raffle, bingo and
tombola stall
Food available
Tickets cost £5 and are
available from the club
If anyone has items to donate
for raffle or tombola prizes
please contact Denis.
Hay Mills
Social Club,
1191
Coventry
Road,
Birmingham,
B25 8DF
For more
information
or to book
your ticket
call Denis on
07946 000822
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Date Event Location Contact
13 December
4pm – 5pm
Christmas Concert
Join us for a Christmassy
concert and sing-a-long to
Christmas carols old and new.
Show your support for the
Cystic Fibrosis Trust and Hamar
Centre, Shrewsbury.
Admission is £4 adults - young
people £2 and accompanied
children are free (tickets
available on the door)
St. Alkmund's
Church, St.
Alkmund's
Square,
Shrewsbury,
SY1 1UH
For more
information
call Richard
on
01743 872701
26 December
7.30pm till late
Family Night
Tickets cost £5 adults, under 1's
free and over 1's are £3 and
available on the door.
Join us for a disco, raffle, bar
and plenty of fun
Wem Sports
& Social
Club, Butler
Sports
Centre,
Bowen's
Field, Wem,
Shropshire,
SY4 5AP
For more
information
or to book
your tickets
call Amanda
on 07891
635579
9 May 2015
Rat Race Dirty Weekend 2015
Worlds longest,
muddiest assault course of 20
miles and 200 obstacles to
challenge the toughest of
people.
Burghley
House
Stamford
Lincolnshire
PE9 3JY
For more
information
or to sponsor
the team
running for
the Cystic
Fibrosis Trust
call Chris on
07977 453
141.
21 June 2015
2pm – 6pm
Sophia's 65 Roses Family Day
Join us for a wonderful
afternoon of fun for all the
family.
Ice cream, bouncy castle,
cake sale, children's activities
and much more.
More information to follow.
Compton
Scorpion
Farm
Compton
Scorpion
Illmington
Shipston on
Stour
Warwickshire
CV36 4PJ
To book your
tickets call
Patricia on
01608 682
552
25 July 2015
7pm till late
Masquerade Ball
Tickets cost £10 each and
includes a cold buffet.
Disco, bar and raffle available.
Kingshurst
Labour Club
51 Clopton
Crescent
Birmingham
B37 6QU
For more
information
or to book
your place
call
Charmaine
on 07961 255
030.
10
Date Event Location Contact
10 September
2015
Swing For a Cure Golf Day
Full English Breakfast 10-
10.30am
18 holes of golf, team prizes
and individual prizes for
champion golfer, nearest the
pin, beat the pro, longest drive
and a putting competition.
The evening will consist of a
three-course meal with after-
dinner speaker.
Auction and raffle.
All this for a fabulous price of
£75 per golfer; if attending the
dinner only, £30.
Single golfers who don't mind
being teamed up are
welcome.
Sponsorship packages of holes,
prizes, putting competition etc
are welcome.
Aston Wood
Golf Club
Blake Street
Sutton
Coldfield B74
4EU
For more
information
or to book
your
place/team
call Paul
Shelley on
07966 013
885.
Regional Fundraising
Manager for
The CF Trust
Martine Grainger
0300 373 1027
Treasurer of the Cystic Fibrosis
Trust (North Staffs Branch)
Fran Foster
01270 842 984
Hospital Charitable Funds
The hospitals at Stoke, Shrewsbury, Telford and Burton all have their own
Charities dedicated to raising funds for patients with Cystic Fibrosis. You can
raise money for the charities by contacting Erin Hodgetts on 01782 675105 or
For up-to-date information on events and events in other regions please visit:
www.cysticfibrosis.org.uk
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Please come and support your Team at the Royal Stoke University Hospital on
Wednesday 3rd December! It is the official launch of Christmas at the hospital
where there will be entertainment, tombola, raffle, cake and gift stalls in the
Main Atrium raising money for the North West Midlands Cystic Fibrosis Centre. If
you like to bake, why not bring a cake along to sell on our stall! Contact Erin
Hodgetts for more details on 01782 675105 or [email protected]
Members of the Cystic Fibrosis Team climbed Snowdon in
July and raised £800 for the CF Funds at the University
Hospital of North Staffordshire. The money raised will help
to buy a Lung Function machine. Team members (and
partners!) were Sadie Clayton, Bobbie Hodgetts, Claire
Collinge, Andy Williamson, Wendy Dale, Erin Hodgetts,
Martin McGowan and Dr Angela Thomas. As well as the
team mascots, Mickey and Peppa the beagles ☺
17 family and friends of Chelsea Griffiths completed a walk
up the Wrekin for the Cystic Fibrosis Trust the 18th May.
Chelsea raised an amazing amount of £1600!
The Cystic Fibrosis Team raised over £500 for the CF Funds
at the University Hospital of North Staffordshire by holding a
Raffle, Tombola and Cake Stall on the 3rd September 2014.
The day doubled up as a CF awareness event providing
patients, visitors and staff at the City General with
information about the North West Midlands CF Centre.
The Bloxwich Golf Club have been amazing and raised a massive £6100
over the previous 12 months. The money will help buy medication fridges
and cool bags for patients who have intravenous antibiotics at home. A
special mention and a thank you needs to be made for Peter Ball and
Maureen Bennett who have been the captains this year supporting the
UHNS Charity.
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Department Address Contact Contact Details
Stoke-on-Trent (regional centre)
City
General
Cystic Fibrosis, Children’s
Outpatients, Main
Building, Newcastle
Road, Stoke on Trent ST4
6QG
Paediatric and adult
services
Telephone:
01782 675105
Facsimile:
0844 244 8307
E-mail: [email protected]
Psychology
Service
The Boat House, 1 Canal
Arm, Festival Park, Stoke
on Trent ST1 5UR
Michelle Edinburgh
(adults) and Dr Ruth
Fishwick (paediatrics)
01782 408354/9
Shropshire
Royal
Shrewsbury
Hospital
Paediatric CF Service,
Mytton Oak Road,
Shrewsbury SY3 8XQ
Rachel Lugg and Tash
Grocott, Community
Nurse
01743 450855
Christine Law,
Physiotherapist
01743 450800
Dr Clair May, Paediatric
Clinical Psychologist
01743 282373
Hannah Joscelyne,
Dietician (on maternity
leave)
01743 261462
Adult CF Service,
Mytton Oak Road,
Shrewsbury SY3 8XQ
Dr Jim Moorcroft,
Respiratory Consultant;
Ana Ireland, Clinical
Nurse Specialist
01743 261240
07837 096755
Princess
Royal
Hospital
Paediatric CF Service,
Apley Castle, Telford TF1
6TF
Dr Martyn Rees,
Consultant
Paediatrician Dr. Senthil
Kumar Sethuraman
01952 565985
Paediatric Team same
as above plus:
Belinda Gower,
Paediatric Respiratory
Nurse Specialist
01952 641222
Burton-on-Trent
Community
Children’s
Nursing
Team
56 High Street, Burton-
on-Trent DE14 1JS
Angie Malkin
(Community)
01283 504 867
On call 07817 756 336
Cystic Fibrosis Trust
Cystic
Fibrosis
Trust
11 London Road,
Bromley, Kent BR1 1BY
Dominic Kavanagh,
Clinical Care Adviser
0300 373 1057
dominic.kavanagh@cysticfibrosis.
org.uk