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Bristol Adult Cystic Fibrosis Centre

Bristol Adult Cystic Fibrosis Centre (BACFC) is an adult CF specialist centre providing high quality multidisciplinary care to adults with cystic fibrosis in the Severn region. We always put our patients first.

Follow us on Twitter at @BristolAdultCF

If you like what we do please consider making a donation via above_and_beyond_logo.gif

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Ciara blogs about life with CF

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BACFC patient Ciara has made a short film about living with Cystic Fibrosis.

Watch it on YouTube now! We think it's brilliant!

 

 

Inaugural Transition Parents' Evening

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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 debate

2014-mccarthy-visit.jpg2014-mccarthy-debate.jpgBACFC 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

2014-new-block.jpgMany 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 projects here.

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.

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January 2014 - Monday afternoon clinics and monthly CF diabetic clinics begin

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 months.

August 2013 - Hello Kate

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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

Charlie AddyHello Dr Clara Lunt

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 day.

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.

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BACFC Twitter microsite launched

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Follow the Bristol Adult CF Centre on Twitter

Find us at http://twitter.com/BristolAdultCF

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

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 October 2012 - WiFi now available for CF patients on Ward 54

wifi-logo.gif 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 days.