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 cf.team@uhns.nhs.uk.

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

2

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: cf.team@uhns.nhs.uk

…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.

6

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

cf.team@uhns.nhs.uk 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! cf.team@uhns.nhs.uk

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

9

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

martine.grainger@cysticfibrosis.org.uk

0300 373 1027

Treasurer of the Cystic Fibrosis

Trust (North Staffs Branch)

Fran Foster

francina2002@hotmail.com

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

cf.team@uhns.nhs.uk.

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 cf.team@uhns.nhs.uk

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: cf.team@uhns.nhs.uk

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