THE Clare branch of a new regional group spearheading a dramatic improvement in facilities for adult cystic fibrosis sufferers was officially launched by All-Ireland winning U-21 hurling manager, John Minogue in the Queens Hotel, Ennis on Friday night.
Over 250 guests were in attendance for the Clare launch of TLC4CF including the winning All- Ireland Clare hurling U21 squad and members of the Clare All- Ireland Ladies Football team.
Also lending their support were Clare senior hurlers, Gerry Quinn and Gerry O’Grady, Clare’s only football All-Star Seamus Clancy and the four Clare TDs.
The Clare branch of a new regional group spearheading a dramatic improvement in facilities for adult cystic fibrosis sufferers hope to raise in the region of €90,000 by the end of next April.
This new regional group has been established to raise up to €3.5 million for an inpatient and outpatient specialised unit for cystic fibrosis sufferers in the Mid-West and have started a campaign to raise the necessary funds and are doing joint fund raisers.
It is expected in the region of €100,000 will be raised in Limerick and about €50,000 in North Tipperary by the end of April.
The new group, which has been in negotiation with officials in the Mid-West HSE since last November, want to provide a new state-of-the art facility similar to the one in St Vincent’s Hospital, Dublin.
Initially, the group organised fundraising events in each county but have now decided to run joint fundraising events as well with the aim of raising as much money as quickly as possible.
Clare branch spokeswoman, Linda Drennan appealed to community groups, organisations, schools, business, clubs and anyone interested in raising money for charity to consider making donations to TLC4CF.
“€3.5 million is a huge sum of money to raise for this vital facility for CF sufferers in the region. The sooner this money is provided, the sooner the unit will be built and become operational for CF patients.”
Cystic fibrosis is Ireland’s most common life-threatening genetically inherited disease and Ireland has the highest proportion of CF people in the world.
About one in 19 people are carriers of the CF gene and where two carriers are a parent a child together, there is a one-in-four chance of the baby being born with CF.
CF doesn’t have to be in a family. Children with CF can be born into families without any previous family history of the illness. A person carrying the CF gene would have no idea that they are a carrier until they have a child with the condition and then discover than both parents are carriers.
A simple blood test can be carried out to detect the presence of the CF gene. CF affects the glands, damaging many organs including the lungs, the pancreas, the digestive tract and reproductive system.
This means that CF sufferers are prone to constant chest infections and malnutrition.
CF patients in Northern Ireland live until the age of between 30 and 33 compared to the average life expectancy of 19 to 20 in the Republic of Ireland.
According to the Pollock Report, CF sufferer live longer when they are kept in isolated rooms in hospital and have high standards of hygiene to avoid cross infection. Treatment clinics also need to have segregation and infection control in place as CF patients are a risk to each other and can transmit associated bugs from patient to patient. Regular monthly check-ups are essential in a well-equipped outpatients clinic.
In an information leaflet explaining the background to their campaign, the group claimed that the health of adult patients attending the Mid-Western Regional Hospital, Limerick are at risk because of the inadequate staffing levels for cystic fibrosis sufferers, an overloaded, overworked CF team and totally inadequate facilities.
There are 78 CF paediatric patients attending the Limerick paediatric clinic and about 40 adult patients. These numbers can vary from year to year and the number of adult patients is steadily increasing all the time as CF sufferers are surviving longer.
When a CF patient reaches the age of 16, they must transfer to the adult service in Limerick, which is poor and doesn’t have an outpatient clinic.
Linda Drennan claimed that placing a CF sufferer in an ordinary outpatients chest clinic was very dangerous as he or she was at risk of picking up infections from other non-CF patients who had various different chest complaints.
Ms Drennan explained that the committee aim to provide, in association with the HSE, five en-suite treatment rooms in a specialised cystic fibrosis outpatients’ unit at the regional hospital.
This would include gym facilities for physiotherapy to improve their lung capacity, a meeting room for the CF team and an air filtration system to clear any possible bugs from the unit. Three possible sites have been identified on the hospital campus for the unit, which is estimated to cost in the region of €2.5 million.
The committee are also aiming for eight or nine highly specialised in-patient en-suite rooms dedicated to CF sufferers costing an estimated €1million to reduce the risk of acquiring unnecessary life-threatening infections.
Bigger than the standard room, it would include a treadmill to help patients improve their lung function, an air ventilation system and other specialised equipment for CF patients.
The TLC4CF committee are also determined to ensure that previous commitments concerning staffing for this unit will be honoured.
Back in 2006, two consultant CF whole time equivalent (WTE) posts, 2.5 CF nurses, .5 physiotherapy, .5 dietician posts were approved, but never delivered.
A new CF consultant is due to start next January as well as a paediatric CF consultant. The committee was promised that two CF nurses would be appointed but it now appears that only one will be appointed shortly.
A locum respiratory consultant is due to retire at the end of the year and the committee want him to be replaced with a CF specialist consultant in addition to having 2.5 WTE CF nurses in the service.
The group ideally want two adult CF consultants and two paediatric consultants for the CF patients who attend Mid-Western Regional Hospital Limerick to ensure that adequate cover is available at all times.
Donations can be made directly through any AIB branch or on-line banking. TLC4CF Clare Bank Account: Allied Irish Bank, A/C No: 24017048 Sort code 93-10-71.
For further information on TLC4CF go to www.tlc4cf.com or e-mail firstname.lastname@example.org.