CF in Guernsey
The treatment of all CF patients, whether that be paediatric or adult services, are controlled by off-island CF teams, as the specialist care required is not available in the Channel Islands. Paediatric protocols allow for ‘shared care,’ reducing time spent off Island receiving routine treatment however, regular visits to a CF team are still essential.
The transition to adult care (between the ages of 16 to 18) means all but emergency care and support is handed over to a UK CF team. For most of us that means CF adult services at Southampton General Hospital.
Contact information for CF services available at the Southampton General Hospital are available in the ‘Help & Advice’ section below.
Help & Advice
For a friendly local voice call parents:
Mike on 07911 747747
Richard on 07781 113183
Courtney on 07781 120408
Medical Specialist Group
Kelly Dunning PA to Dr Clare Betteridge (paediatric care) 01481 238565 Ext 2410
Kirsty Robert PA to Dr Wasif Anees (adult respiratory consultant) 01481 238565 Ext 2256
The Guernsey Therapy Group (GTG)
The Group do not have a specialist CF service but both adult and children physiotherapy services offer local support with Southampton’s specialist guidance. In general, anyone with a long-term condition such as CF who is under a care of a consultant have open access to GTG’s secondary care physiotherapy (including self-referrals and GP referrals) to avoid unnecessary delays in getting help.
GTG St Martins 01481 232900, Paediatric services Le Rondin School 213600 and the PEH 725241 ext 4040
Respiratory Clinical Nurse Specialist – Adult Community Services
Kate Kemsley 01481 725241 Ext 4900
Social Security Health Benefits Team – 01481 732402
If you need help with any urgent travel bookings, outside of office hours, please phone travel consultants at Hogg Robinson Group (HRG) on 0203 948 6829.
Go to the following link to download all the information you need for off island travel https://www.gov.gg/offislandtreatment
Outstanding local organisations providing a wide variety of support for teenagers, families, siblings and carers include
The Youth Commission
The Youth Commission (formally The Hub) have recently merged to expand the range of services offered. They still provide a safe and confidential space for children and young people to access one-to-one emotional support. They support young people to develop coping skills and strategies so they can build resilience, manage their feelings and overcome any barriers they may be facing. In addition to one-to-one support they run groups through out the year focussing on, managing emotions, self-esteem, anxiety, child sexual exploitation, children of prisoners, bereavement, exam stress, young carers, LGBTQ+ and confidence.
Anyone can refer children and young people to their services by calling the Youth Commission (old Hub building) on 01481 724421 or emailing them on firstname.lastname@example.org.
Wigwam Support Group
“Wigwam Support Group is based in Guernsey and offers friendship, support and advice to local parents, families and friends who have, or are involved with, children and young people with a special need.”
States’ Champion for Disabled People
Deputy Sarah Hansmann Rouxel – if you need help resolving an issue with the States (relating to disability) or to help Sarah represent the views of disabled islanders and carers in States debates.
Tel: 07911 765863
Southampton General Hospital Channel Island Liaison Team
The Southampton General Hospital Island Liaison Team are a great contact point for any problems for all patients coming across from the Channel Islands.
For admin queries (or leave a message) Debbie Moffat 023 8120 4515
For clinical queries (08.00 – 18.00 Monday – Friday)
Jane Taylor – mobile 07771 344939
or call 023 8077 7222 option 1, ask for bleep 1357
The team work across the wards and within radiotherapy.
Radiotherapy Operations Team – 023 8120 1269
Radiotherapy Bookings – 023 8120 8851
For taxi travel to and from Southampton airport and the Hospitals.
Handicabs – 02380 615222
Southampton General Hospital – Information
Meet the children CF Team
Childrens out patient contact information.
Contact the adult CF Team.
CF Trust – Support for all
Off Island treatment leaflet
a simple guide to having your off island travel approved and booked.
Guernsey Disability Alliance
Living with CF in the Channel Islands presents a wide range of additional challenges not faced by those living with the condition in the UK.
Having watched my daughter struggle through her teenage years at school, battling ill health, depression and more recently the daunting task of finding employment, with a little known and understood ‘hidden’ disability, I decided that action was required, not only to help Courtney but the youngsters who would be treading in Courtney’s footsteps. CF, particularly in the Channel Islands, can be a very isolating condition when it doesn’t need to be.
With the assistance of another Dad (who’s teenage daughter also suffers from CF) we set up Cystic Fibrosis Guernsey, becoming a registered member of the Guernsey Disability Alliance and more recently the first locally registered CF charity.
Our initial focus is bringing the Channel Island CF community together. Other aims include;
1. Providing a medium through which the Channel Islands CF community can interact, support, identify and discuss CF needs within the Islands and focus attention on them.
2. To work closely with other local charities to find common ground to raise funds for medical or other equipment.
3. Support the wider CF community by raising funds for medical research.
To have CF, you need to have inherited two faulty copies of the gene (one from each parent), and as there are many different gene mutations that cause cystic fibrosis, each person with the condition can have very different symptoms depending on the two genes they carry. While people with CF often look healthy on the outside, each individual is battling their own range of symptoms on a daily basis.
As a parent of a child with a life limiting condition I know how incredibly difficult it can be to know how to help your child, teenager or young adult through each phase of their life. No one teaches you how to explain to a defiant 9,10,11 year old, the long term importance of each and every set of medication and treatments or implications of their condition.
Follow the link to listen to Courtney and dad Mike, Emily and dad Richard, talk about their lives with CF, diagnosis, treatment regimes and the future. Our Factsheet is also available to download from here.
Tel: 07911 747747
Tel: 07781 113183
Tel: 07781 120408