Agreement reached between Build4Life and HSE on dedicated Cystic Fibrosis facilities at CUH

Agreement reached between Build4Life and HSE on dedicated Cystic Fibrosis facilities at CUH

28 February 2014

Agreement has finally been reached between Build4Life and HSE/ CUH Management on the provision of specific Cystic Fibrosis (CF) facilities at Cork University Hospital (CUH).

Build4Life, formed in 2007, has to date raised €3.5 million in funds to develop lifesaving inpatient and outpatient facilities for people with Cystic Fibrosis (PWCF) at CUH, which cares for 25% of Ireland’s CF population. Build4Life, which is run voluntarily by PWCF, their family and friends, was the first charity in Ireland to raise funds for CF facilities in any Irish hospital.

Thanks to the improvements in facilities and treatments, PWCF are living longer. In 2005, CUH cared for 85 CF adults; this has increased to 160 in 2013; and is estimated to reach 250 by 2020. Even though PWCF are living longer, one statistic remains the same - over 90% of PWCF die from respiratory issues, which is why the development of a state of the art Respiratory Ward (Ward 5B) is essential to extend the lives of PWCF using the CUH facilities.

Ward 5B was proposed as a new, high tech respiratory ward; however Build4Life was informed that CUH had no funds to develop this ward. Taking a proactive approach and thanks to the generosity of the general public, family and friends of PWCF, Build4Life raised €2.3 million to fund the ward. This money was raised with the understanding that 10 beds out of the 20 would be ring-fenced for CF patients and an additional one bed unit in the Renal Ward for CF patients with infections like cepacia, who couldn’t be treated in the CF ward. During the design stage these 10 beds were reduced to 8 beds, with 2 beds being located in the renal ward.

For the past 3 years Build4Life has been requesting a contract from CUH agreeing to this allocation, with no success; however Build4Life is pleased to announce that an agreement has finally been reached between the charity and the HSE, thanks to the support of Junior Minister Kathleen Lynch and Gerry O'Dwyer, Regional Director for Performance & Integration with the HSE.

The agreement will deliver 10 designated single inpatient rooms for Adults with CF – 8 CF specific single en-suite rooms on ward 5B and 2 CF specific single en-suite rooms in the newly built Cardiac Renal Centre. These 10 rooms will be formally “designated Adult CF beds” and the rooms will be identified on the doors as Cystic Fibrosis rooms.

Four of these single en-suite inpatient rooms will be ring-fenced for adult CF patients on Ward 5B. In the event that all four ring-fenced CF single en-suite inpatient rooms are filled by CF patients, an emergency CF bed policy will come into force, whereby another of the CF designated beds on Ward 5B will be kept empty and prepared for any CF emergency admission. If necessary this will entail moving a non-CF patient out of a designated CF-bed immediately in order to ensure there is always one CF-bed on stand-by for emergency CF admissions. If the number of CF inpatients continues to increase, this emergency CF-bed policy will continue in line with the number of CF inpatients until the point where all 10 designated CF-beds are being utilised by CF inpatients. Any failure on the part of CUH to honour the contract will see all the 8 beds ring-fenced for CF patients.

Based on this agreement, Build4Life has agreed to sign over the agreed funding of €2.3m, of which circa €1.8m are construction costs and circa 500k are equipment costs.  Post construction contract award, the HSE will be contractually committed to pay the contractor on a monthly basis, and Build4Life will contribute the costs on the basis of one fifth of the construction costs per month.

Under the new agreement, the HSE has committed to providing extra staff to fill the shortfall in the CF paediatric unit, namely one new full-time nurse and a new half-time physiotherapist in-house, and access to a half-time psychologist service on an out-patient basis under Junior Minister Kathleen Lynch’s new mental health provisions. CUH will also ensure Wifi is available in all 10 CF-designated inpatient rooms and the adult outpatient clinic.

Commenting on the news, Joe Browne, Chairman, Build4Life said “Build4Life had a moral and legal obligation to CF adults and to the public who helped raise the funds to develop these lifesaving facilities, and to ensure beds are ring-fenced. We are very pleased with the agreement that has been reached with the HSE, and our sincere thanks goes to Minister Kathleen Lynch and Gerry O'Dwyer of the HSE for their invaluable support and influence.”

He added “The day we hand over the funds for the Adult Respiratory Ward will be a major milestone for Build4Life. It is something we have all been working so hard, for so many years to achieve and our focus remains developing life-saving inpatient and outpatient facilities for PWCF. The contribution of Build4Life towards the refurbishment of Ward 5B, and in particular the provision of adult CF inpatient facilities will be acknowledged with a plaque in 5B, in order to thank the supporters and to ensure continued support for fundraising efforts in the future.”

Work is expected to commence in the coming weeks as soon as a contractor is appointed. There will be an official opening of the CF inpatient facilities within a month of completion, with details of the opening to be agreed by the HSE and Build4Life.

For further information on the work of Build4Life, visit www.build4life.net.