Bristol Adult Cystic Fibrosis Centre
Ciara blogs about life with CF
BACFC patient Ciara has made a short film about living with
Watch it on YouTube
now! We think it's brilliant!
Inaugural Transition Parents' Evening
BACFC held their inaugural parents evening in April for all
parents of children with CF aged 14yrs and up who might
transitioning and transferring to BACFC. This was very much like a
school Open Evening, and was a chance for people to meet the BACFC
team, get to know us a bit and discuss some differences (and
similarities) between the adult service (generally and here in
Bristol). There was also an opportunity to explore a bit
about how to help your child prepare during the transition
process. There was also a chance to chat and plenty of tea,
coffee and cake! It was a really successful evening; we were
delighted to be joined by many from the Paediatric teams and well
as lots of parents from across the region. It was fabulous to
meet so many parents and hear your views. Thank you to all
that attended and for the fantastic feedback; we have looked at all
the comments and will take the suggestions forward for next year!
Kerry McCarthy MP visits BACFC and leads House of Commons
BACFC had a visit from Kerry McCarthy, MP for
Bristol East. Kerry, who has a niece with CF, spent some time
visiting the centre finding out more about CF. The following week,
she led an adjournment debate about cystic fibrosis in the House of
Commons, summarising the challenges of living with and treating CF,
including the growing numbers of adults with CF, the burden of
treatment, transition from paediatric to adult care, prescription
charges, and balancing treatments with work and life. She talked
about the vital role of multidisciplinary care in CF, emphasising
the contribution of social workers and psychologists, and went on
to discuss the issues around lung transplantation in CF, the need
for measures to increase organ donation and the DEVELOP-UK study which aims maximise the number
of lungs available for transplant.
New BRI Ward Block
Many of you will have noticed the new
building going up within the BRI and there is some discussion about
whether there may be beds allocated for CF within the new build. At
present, these discussions are on-going and various options are
being looked at. We need to expand our bed base, if it all
possible, and so are in negotiations with the Trust as to how best
to make this happen. This might mean moving across in to the
new build and keeping some beds in the current hospital buildings
or keeping ward 54 cubicles and using other beds in addition.
We also need to factor in the importance of having trained staff on
the wards that we are on, so we are keen to ensure we work with the
Trust to get the best solution.
In short, we don't yet know for definite if will be moving from
Ward 54 and 10 but are working on finding the best solution and
will let you know as soon as we can!
If you have any queries, please feel free to ask us. You can
find out more about the building and other BRI redevelopment
Welcome (back) Dr Leahy
Dr Leahy qualified from London University in 2003, gaining
MMedSci with distinction in 2012. Abbey was Specialist Registrar in
Cystic Fibrosis at the Bristol Royal Infirmary in 2010, and
returned as Locum Consultant Physician in Adult CF and
Respiratory Medicine in February 2014.
January 2014 - Monday afternoon clinics and monthly CF diabetic
We're happy to announce that we are now running a third weekly
consultant clinic - on Monday afternoons. It's in clinic
10 on level 4 in the Queens
Building (not level 2). Tuesday morning and Thursday
afternoon clinics continue on level 2 as before.
We're also now running CF Diabetes clinics
(jointly with Dr Natasha Thorogood, Consultant in Diabetes
and Endocrinology) monthly rather than on alternate
August 2013 - Hello Kate
Clara did a brilliant job and we wish her every success in her
career as a GP and has been replaced as CF Fellow by Dr
Kate Greenhalgh. Kate qualified in Manchester and
completed core medical training in hospitals in Gloucester and
Bristol. Kate is taking on the Fungal Biomarker study - about which
more to come soon.
April 2013 - Goodbye Charlie and Hello Clara
The team are all very sad to say goodbye (or au revoir?) to
Dr Charlie Addy who has been the Cystic Fibrosis
Fellow at BACFC for the past year, and who has done a brilliant job
- on the wards, in the clinics, and behind the scenes. We wish her
all the best for the future and hope she'll return to the BRI some
Charlie is replaced by Dr Clara Lunt who
trained in Leeds and has recently returned from a period of time
working in South Africa.
December 2012 - Kalydeco (ivacaftor)
|We're really happy that Kalydeco™ (ivacaftor), a
twice daily tablet treatment which is licensed in the UK for people with CF with at
least one copy of the G551D genetic 'mutation', has now been funded
by the NHS from January 2013. We're contacting all those who have
this 'genotype' by letter. If we don't contact you, it means
Kalydeco won't be helpful for you - but there are more drugs in the
pipeline to address the genetic cause for cystic fibrosis. We're
aware of all of them - and we'll let you know it there is anything
available to you which you might benefit from. Drop us a line or
ask us in clinic if you have any questions.
BACFC Twitter microsite launched
November 2012 - Planning for Parenthood CF Pregnancy
Information website online
We've just released our new website, Planning for
Parenthood, available at http://cfinfo.org, which is full of
useful information about the pregnancy in cystic fibrosis. It
includes the following sections:
- Can we have a baby?
- CF and birth control
- Could our baby have CF?
- Should we have a baby?
- Planning for a safe pregnancy
- How does it feel to go through fertility treatment?
- What is it like to be a parent?
There's informed content and video blogs from CF patients with
real experience. Check it out at http://cfinfo.org
October 2012 - WiFi now available for CF patients on Ward
||We're thrilled to announce that CF patients on Ward 54 now have
access to WiFi internet access. All you need to do is register with
the Ward Clerk and you'll be given access for the next seven