Broken promises: CF patients left in limbo at CUH

Build4Life raised millions with the aim of opening an adult in-patient ward at CUH for CF patients. Legal issues and disagreements have left it in limbo, reports Catherine Shanahan.

IN 2011, a Chilean winemaker honoured a down-to-earth Kerryman for his tireless devotion to fundraising for the sake of improving services for patients with cystic fibrosis (CF) at Cork University Hospital.

For his efforts, Castleisland native Joe Browne was deemed winner of the Local Hero of the Year Award and received a €10,000 cheque to fund a project of his choice, courtesy of the makers of Santa Rita wines. Joe’s efforts were described by the judges as “inspirational”.

The project to benefit from Joe’s endeavours was of course Build4Life, the charity he founded in 2007.

Joe’s motivation in setting up Build4Life was no different to the reason most people engage in fundraising — it was a cause close to his heart. His 13-year-old son Pádraig has CF and the untimely death in 2006 of a friend who had CF, Mary Hand, from Dingle, spurred him into action.

“Mary was just 23 when she died,” says Joe.

“She was like the daughter I never had. It was through visiting Mary in CUH that I became aware of the lack of facilities for CF patients at the hospital. She picked up every bug known to man while she was in there and I swore if my son was going to succumb to his condition, he wasn’t going to die in one of those bedrooms.”

He set up Build4Life with the initial goal of raising €1m for an adult in-patient unit for CF patients. “I’d been listening to other parents saying they’d been lobbying for improvements for 10 to 15 years and I was damned if I’d be saying the same to the next generation. I knew the only way to do it, was to do it ourselves.”

Joe modestly says “ourselves” but the reality is the project began with, and is primarily driven by, him. Yet despite international recognition of his efforts, despite raising €3.5m towards CF services at CUH, and despite the fact his name is synonymous with fundraising for CF services, Joe now finds himself locked in an increasingly bitter battle with the HSE, specifically management at CUH, about future plans for beds in a ward his Build4Life charity funded.

Build4Life fundraised to pay the entire €2.3m cost of refurbishing a 20-bed ward (ward 5B) at CUH for respiratory patients (patients with a variety of lung disease) in the belief that eight of these beds would be ringfenced for CF patients.

This commitment was enshrined by the hospital from the outset in a statement of need dating back to Jan 2012. Now, almost two years later, the project has ground to a halt because the hospital has backtracked on this commitment, offering instead “priority access” for CF patients to beds.

Gone is any promise of dedicated beds. And despite repeated requests from Build4Life for a contract protecting its investment vis-à-vis the promised beds, the hospital has failed to offer this legal guarantee.

“Basically, the hospital let us pay for the entire ward and now they won’t even promise us less than half of those beds. It’s like buying a new car and the garage telling you, ‘you can use it during the week, but you must bring it in to us at the weekend’,” says Joe.

The upshot of the row is that €2.3m destined for the new respiratory ward remains in an escrow account and solicitors for both sides have been firing off missives in an effort to get the project back on track.

Joe is adamant Build4Life cannot hand over money unless the bed pledge is signed off via contract. He points out that the hospital commitment to provide these beds goes back to the very first meeting of the project group set up to drive the development of ward 5B.

At that meeting on Dec 7, 2011, respiratory consultant Dr Barry Plant, head of the adult unit for CF at CUH, outlined how the ward would have 22 beds, 10 of which would go to the respiratory service (for patients with lung disease other than CF) and 10 to the CF service.

Joe says Build4Life was told from day one that they would have to come up with the entire cost of the ward refit. “The hospital told us the only way forward was if Build4Life came up with €2.3m. That was our situation: ‘Come up with it and you have an adult in-patient unit; don’t, and you have nothing’.”

The final draft of the statement of need which Joe received from hospital management on Jan 16, 2012, appeared to copperfasten the promise of dedicated CF beds. Under the general description of the project, it said the CUH executive management board was committed to developing an adult CF unit, which would be incorporated into a respiratory ward.

Crucially it said there was a need to increase the number of dedicated “ringfenced” single side rooms for adult CF patients “who require admission and isolation”. The statement specifically referred to 10 adult CF single rooms. This was in line with the European CF Society document on standards of care and CUH’s own statement of need. It was also against a backdrop of a rapidly increasing adult CF population (in 2005, there were 85 adult CF patients attending the hospital, rising to 145 by 2011). In fact, Dr Plant, according to the statement, had “identified a need for 11 single side rooms to provide appropriate inpatient accommodation”.

The statement pointed out that current expert opinion “recommends a minimum of 10 protected single room isolation beds per 100 adult CF patients” and that patient numbers at CUH “would support the development of at least 10 inpatient isolation rooms”.

FAST-FORWARD to now and the attitude towards what is now needed for CF patients at CUH seems to have shifted considerably.

In 2012, the hospital was talking about national and international guidelines highlighting “the absolute need” for single room accommodation for CF inpatients to minimise the risk of cross-infection. Now, it seems “priority access” is good enough.

Mention of “priority access” instead of ringfenced rooms first surfaced in communications between solicitors for Build4Life and CUH on Oct 24 after the row had gone legal. A letter from CUH solicitors Comyn Kelleher Tobin to Build4Life said the hospital “acknowledges” the concerns raised by those involved in fundraising for CF facilities. But it offers no more than “priority access” to eight en suite rooms on ward 5B.

The same letter was accompanied by a draft legal agreement which Build4Life rejected because it failed to provide any assurances on dedicated CF rooms. Joe says he had been asking for a legal agreement protecting their investment “for years” but that it failed to materialise.

“We had always told the hospital a contract had to be in place to protect our investment, to guarantee the beds would be there for the patients we had fundraised for. I repeatedly asked for a contract. As late as last June or July, I asked the business manager.”

The position of CUH management in relation to a contract was that the minutes of a meeting held on Sept 4 could act as the legal guarantee that Joe required. The minutes stated that there was “agreement in principle” that the CF bed complement would be 8 + 2 beds, with eight based on ward 5B and two elsewhere for seriously ill CF patients who needed to be separated from other CF patients to minimise the risk of cross-infection.

Joe says that as far as he was concerned, there was no “agreement in principle” as he did not accept the minutes had the same legal standing as a contract. Without this contract, there would be no transfer of funds.

He put this position to a meeting of the Build4Life group on Sept 11 and there was unanimous agreement that the matter needed to be referred to a solicitor, he says. He informed CUH management, including chief executive Tony McNamara, that the matter was now in its solicitor’s hands.

On Sept 16, Mr McNamara wrote to Joe saying he was “very surprised” the matter had gone legal. He complained this approach would lead to additional legal costs. “I fail to see why Build4Life or the HSE should have to incur additional and unnecessary costs when we have already agreed on how we are to proceed,” he wrote. Joe says Build4Life had reached no such agreement.

Mr McNamara went on to argue that agreement had been reached at the Sept 4 meeting and that the minutes were sufficient to allow the transfer of €1.8m to the HSE to allow it to engage a contractor for the respiratory ward project.

Mr McNamara said the project was “a priority for CUH” but warned that if he did not have confirmation from Build4Life of its decision to transfer monies by Sept 20, he would “have to meet with the CF community and advise them of the position”.

Joe took this as a threat and believed the hospital intended to put pressure on Build4Life to release the money by shoring up support for the hospital’s position among members of the CF community. He says he received five phonecalls that evening from concerned parents asking why Build4Life was hanging on to funds.

“Each person I spoke to, I explained that Build4Life would be giving over the money but not without a contract to protect it. They accepted my explanation, but I felt as if someone had put a gun to my head,” Joe says.

Within 24 hours, he had resigned as head of the CUH Charity, a body he was headhunted to run because of his success with Build4Life. He had been in the job 18 months but said his position had become untenable. “I couldn’t walk down the hospital corridors, I felt I had no choice but to go.”

From Joe’s viewpoint, the changing position of the hospital vis-à-vis what CF patients need has not helped in the row now threatening the entire respiratory ward project. A letter of Sept 23 from CUH solicitors to Build4Life advised that it was “difficult to frame a legal agreement to reflect a dynamic or evolving service”.

It said the hospital had “sought to point out the dynamic and evolving nature of medical science which hopefully will lessen the need in the future for the very services for which the project is envisaged”.

Build4Life’s solicitors said while they appreciated the “dynamic and evolving nature of medical science”, Build4Life members were dealing with the “present situation that presents itself to them as a concerned groups of parents, funding life-saving facilities for their children and families”.

“Our client requires an agreement to be signed prior to the handing over of funds... This agreement will have to confirm the ringfencing of the eight beds for CF patients, clarify and confirm the location and use of the “plus two” beds, and confirm that adequate staffing will be provided to staff the ward,” the solicitors wrote.

The Build4Life solicitors stated: “The need for this agreement has been discussed for a number of years... indeed we had correspondence in 2010 regarding same.”

A need to identify the number of staff that would run the ward had also been discussed for two years, Joe says, with a hospital staff member sitting on the project group for that specific purpose. All that came out of it was that the new ward would be staffed “at existing levels”. No figure was ever given, Joe says. Neither was progress made in identifying the specific location of the two CF beds for seriously ill patients who won’t be in ward 5B.

SO what now for the plans for 5B? It’s well behind schedule — building work would have been completed before Christmas had the project remained on track. It won’t budge until Build4Life gets the guarantee it needs.

“It’s seven years since I founded Build4Life and three years since I asked for a contract to protect our investment,” says Joe.

“Yet they don’t come to me looking for money until the 11th hour and I’m expected to hand over a couple of million at the drop of a hat? We’ve compromised every step of the way but I won’t do it when comes to hard-raised funds. If they told us seven years ago that after fundraising for the entire cost of the respiratory ward that we still could not have the CF beds ringfenced for CF patients then I would have said ‘good luck’.”

Joe says the fight has broken him. “I’m at this 10 years. We’ve been going to the public, cap in hand, and raised €3.5m. Build4Life has no staff, just volunteers. Can you tell me of another charity that has to pay for 100% of its own facilities? I feel like we’re an encumbrance at this stage. I’m broken from it.”


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