CUH deal ensures beds are ring-fenced for cystic fibrosis patients

A row between Cork University Hospital and Cystic Fibrosis charity Build4Life over the ring-fencing of beds threatened the building of a new €2.3m ward. Build4Life founder Joe Browne is happy to draw a line under the saga as agreement is finally reached

IT WAS with great relief that a contract between the Build4Life charity and the HSE was finally agreed last Wednesday.

This contract will see the largest philanthropic donation ever made to Cork University Hospital (CUH) in the form of a cheque for €2.3 million which will be used to develop a ward that will be the primary respiratory inpatient facility for Munster.

The 20 bed ward (Ward 5B) will cater for adults with chronic respiratory illnesses, including Cystic Fibrosis (CF). The need for inpatient isolation rooms for adults with CF is paramount to their well being and will lead to better health and life expectancy by reducing the risk of cross infection in the hospital environment.

Build4Life was formed in 2007 after the death in CUH of CF patient Mary Hand from Dingle, Co Kerry, who was unable to have a lung transplant due to infections she contracted.

Mary’s death highlighted the need for isolation facilities for people with this cruel, incurable, disease.

While the lack of specialist facilities for people with CF was glaringly obvious to families affected by it, nothing had been done to rectify the situation, despite the best efforts of campaigning parents.

It became clear that the only way to bring about any change was to raise the funds ourselves. It was against this backdrop that Build4Life became the first charity in Ireland to raise funds specifically for CF isolation ensuite rooms.

In doing so, we created a road map for other CF charities to follow.

Build4Life, which is run by volunteers, has raised €3.5m since it was formed. We funded the adult CF clinic which opened in CUH in 2011 at a cost of circa €350,000. We have €800,000 of the €1m needed to develop inpatient and outpatient facilities for children with CF attending CUH. This year we hope to raise the additional €200,000.

We have made other donations to CUH, including the purchase of medical equipment which will allow the paediatric CF team to treat children in single rooms until the new children’s unit is developed.

Smaller items like iPads were recently purchased by our charity for use by children with CF while inpatients in CUH.

Through our recent negotiations with Minister Kathleen Lynch and Gerry O’Dwyer (HSE) we have secured a full-time nurse, a half-time physiotherapist and a half-time psychologist for the children’s CF department. And the wifi we paid for at the adult CF clinic will finally be made available to adult patients, albeit after a three-year delay.

We are now at the point of handing over €2.3m to pay for a new 20-bed adult respiratory ward. This level of fundraising is a significant achievement when you consider that we are a charity that operates without any paid staff. I think it also fair to say that in all our dealings with CUH over the years we have never refused requests for further funds.

When the adult CF clinic was completed and opened Build4Life was asked for a further €150,000. It appeared the hospital had entered into a contract with the builder without having sufficient funds. We were told if we made this further contribution, management at CUH would ‘look favourably’ on developing the adult inpatient facilities. And so we handed over the money required.

Given our willingness to cough up funds at every request, we did not consider it unreasonable to ask that a contract be put in place before we handed over our biggest donation of all — €2.3m for the much-needed adult respiratory ward.

We felt the contract was necessary to protect our investment and essential to guarantee that CF patients would have access to beds. This was why we agreed to fund the ward in the first place — in the belief that out of 20 beds, 10 would be ring-fenced for CF patients.

While the hospital initially agreed that 10 beds would be protected for CF patients, they subsequently changed their minds. Eventually all they could offer was “priority access”. Having witnessed what happened in St Vincent’s in Dublin — when CF patients were unable to access supposedly ring-fenced beds — we felt we had no option but not to release the funds. We had asked people to donate to our cause on the understanding that the money would fund dedicated CF beds, but the hospital had moved the goalposts.

However, CUH refused to put a contract in place guaranteeing what we had sought. This led to a stand-off. Several Build4Life meetings were convened and all who attended felt no funds should be handed over without the required contract being in place.

Our legal team advised the contract was necessary to protect our investment. The hospital refused to budge.

It took the intervention of junior Health Minister Kathleen Lynch and the involvement of HSE official Gerry O’Dwyer to negotiate a deal. A draft agreement was hammered out this week. Once signed, Build4Life is happy to hand over the funds.

To the adults who have been in CUH in sub-standard rooms, we sincerely apologise for the four-month delay in getting the project underway. But at the end of the day I believe that without the marathon efforts of Build4Life, families (like mine) that are affected by CF would have to wait another 30 years for a development like the one we are funding.

The contract now in place will guarantee the ring-fencing of four CF beds with an emergency bed always available. And to prevent any abuse of this agreement, if CUH fails to protect these four beds, we have inserted an additional clause in the contract that will require them to double the number of ring-fenced beds to eight. We believe this penalty will act as a sufficient incentive to make sure they honour the agreement.

Finally, we would like to thank all who have supported Build4Life over this difficult time. We look forward to your continued support as we fund the children’s CF facilities in CUH.

* Build4Life is a registered charity and is not affiliated with any other CF charity.

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