E-Bulletin from Cystic Fibrosis Association of Ireland

e-Bulletin from Cystic Fibrosis Association of Ireland

Issue 12, June 2010

Dear All,

Welcome to the 12thissue of our monthly e-Bulletin ‘Spectrum’.

This month’s issue is once again jam packed with news and recent developments from CF centres around the country, not to mention information on all the latest excellent fundraising initiatives that have been taking place.

We also have the latest news from the CEO of St Vincent’s UniversityHospital on building progress for the new ward block, and would like to reassure our members that this remains a priority for the CFAI. Wewill continue to monitor subsequent progress closely in conjunction with senior hospital management at St Vincent’s and shall communicate any further developments with you as they arise.

Finally, congratulations to all who completed the Cork Marathon and the Flora Women’sMini-Marathon in Dublinover the bank holiday weekend. Despite the bad weather, record numbers of people turned out to demonstrate their commitment and support to the CFAI and local branches. Also, a special thank you to all involved in the hugely successful ‘1 in 1000’ initiative for all their Trojan work over the past couple of months.

If you have any suggestions or ideas for what you would like to see included in future editions of Spectrum please contact us at CF house or email .

Kind Regards,

Philip Watt (CEO)

Alica May (Editor)

• Key Developments •

Update on New Ward Block at St Vincent’s University Hospital

Latest news from the CEO of St Vincent’s UniversityHospital (3rdJune 2010) is that the site for the new building (which will include the CF Unit) has been cleared and the Hospital are poised to award the contract for building. There has been a delay in the past few weeks because they are awaiting confirmation from the preferred contractor that they will be able to fulfil all the criteria of the contract, in particular the absorption of costs until the end of the project in 2011, which is a unique feature of this project. We understand that if the first preferred contractor cannot obtain the necessary bank guarantees, the second preferred tender will come into the frame. A decision on this issue will be made within the next few days. CFAI has acknowledged the ongoing efforts of hospital management to resolve these issues and has urged that the tender is awarded as soon as possible. We understand that building work on the whole project will take approximately 14 months and is still due to be completed at the end of 2011. CFAI will continue to monitor progress closely, including liaising with the senior management in St Vincent’s UniversityHospital on a regular basis. Further updates on all subsequent developments will be posted in future issues of Spectrum.

Cleared site at St Vincent’sUniversityHospitalwhere the new ward block is to be built

Description of Project

Beds will be accommodated in 5 in-patient ward units. Each of these units will consist of 16 single ensuite and 4 isolation ensuite rooms to give a total of 20 beds per ward unit. The CF in-patient unit will be accommodated in one of these wards. In addition to the 5 in-patient ward units, the Cystic Fibrosis Day Care unit will comprise an additional 10 single en-suite rooms to give a total bed complement of 110 for the new ward block.A day room, seminar/interview room and a treatment room are also planned at each level.

Artists impression of the New Ward Block at St Vincent’sUniversity Hospital

Long-term Illness Card Concerns for PWCF

Many of ourmembers have recentlycalled expressing theirconcerns that certain CF-relatedmedications and drugs are no longer being covered under the Long-Term Illness (LTI) card scheme.The CFAI would like to reassure its members that any such confusion is due tothe implementation of a system change by the HSE, which isaimed to improve efficiency with Pharmacies nationwideand to establish proper statistics in relation to drugs and items required for all illnesses listedon the LTI book.

In summary, alldrugs/medicines relating to CF treatment and care must be listed on the PWCF LTI book in order for a pharmacist to dispense the item(s). If there are items currently missing on your LTI book, then you must go to your Local Health Office (LHO - list available on HSE website under ‘Find a Health Service’ tab at top of homepage and then select ‘Local Health Office’ tab on left hand side of page) to getthe items added to your list.

Shouldyour pharmacist inform you that an item is not listed or covered, you then have up to four calendar months to go to your LHO and get your LTI book updated. If you do not do this, then the item will not be covered by the HSE on future prescriptions (after the four-month period expires). Please note that a PWCF should speak to the LTI clerical staff at their LHO first and if they are not familiar with a particularitem or cannot sign off, then it will be referred to either the HSE Community Pharmacist or Senior Area Medical Officer (this varies for different areas and regions, can be either/or). However, in general the clerical officer should be able to sign off and ensure the items are listed under your LTI number on the HSE system.

Again, please note that these steps may have to be taken purely to accommodate a revised method of reporting drugs claimed under the LTI Scheme. It will allow the HSE to more accurately capture drugs approved for each LTI Client and help avoid unnecessary rejection of claims. The HSE has not stated that they will no longer pay for drugs and medicines needed for the treatment of specified conditions.

EU Directive on Organ Donation and Transplantation

The CFAI welcomes news that the EU Parliament has voted in favour of legislation aimed to help increase the supply of organ donors across the EU, enhance the efficiency and accessibility of transplantation systems and ensure the quality and safety of procedures.

Why do we need an EU Directive on Organ Donation and Transplantation?

The number of organ donations and transplantations has grown steadily across the EU and thousands of lives are saved every year through this medical procedure. For end-stage failure of organs, such as the liver, lung and heart, it is the only available treatment.

Currently, there are wide variations in quality and safety requirements between Member States. A national approach could not ensure a minimum standard of quality and safety for the organs that are exchanged between EU countries each year. A Directive is needed to ensure a high level of health protection throughout the EU by establishing common standards of quality and safety of human organs intended for transplantation.

How will this Directive address these problems?

The Directive will ensure that the necessary quality and safety structures are put in place across the EU for the donation and transplantation of organs. This will also facilitate the exchange of organs and expand the pool of organs available, ensuring a better match between donor and recipient. It will do so via several means:

• A competent authority will be appointed in each MemberState, where one does not already exist, to make sure that the quality and safety standards of the Directive are complied with;
• A system for the authorisation of organ procurement and transplantation will be established, based on common quality and safety criteria;
• National quality programmes will be introduced to ensure continuous monitoring of performance, leading to learning and improvement;
• Member States will put in place organ traceability systems and systems for the reporting of serious adverse events and reactions;
• Transplant teams in all Member States will be reassured that they will receive the appropriate and complete information required regardless of the country of origin of the organ;

These standards will help to reassure the public that human organs procured all over the EU will carry the same basic quality and safety guarantees, regardless of the country.

EU member states now have the responsibilityof implementing the measures set out in the Directive, including setting up a system for monitoring organ procurement, by passing or changing national laws. Countries have up to two years to pass the relevant legislation

News from CF Centres

Waterford: Waterford Regional Hospital is in urgent need for a unit to allow the recently appointed CF Consultant to work with adults with CF. The key components identified for developing a limited adult service in the short-term are provision of a registrar and day ward/ drop-in ward. Single en-suite rooms are needed both for adult and paediatric PWCF. The CFAI is committed to working closely with the CF team and hospital management in WRH to create more visibility to these issues and to develop a strategy to overcome the current limitations in services for PWCF in this region.

Galway: Key issuesthat emerged from a positive meeting between management in Galway University Hospital, the Galway CFAI Branch and CF House included the replacement of staff on leave; guidance on the use of new CF isolation rooms, and the ongoing delay in the appointment of an adult CF Consultant. CFAI wishes to acknowledge and thank Jarlath Feeney who has stepped down after 11 years as Chair of the Galway Branch. His role has been filled by the very capable hands of Mary-Lane Heneghan.

Galway CFAI Branch committee members, Mary Lane Heneghan and Jarlath Feeney make a presentation toBrigid Howley, General Manager, Galway Hospitals in recognition of her supportof CF services in Galway on the occasion of her retirement from her post of General Manager on 30 September 2009.

Drogheda:The CFAI and the Drogheda Branch (represented by its Chairperson Cyril Gillen) recently met with the vendor of a property located on Windmill Roadto discuss its’ purchase. Our intention is to establish this property as an out-patient facility for children with CF. In, principle, this plan has been agreed. When completed, it will be the first time that a dedicated out-patient facility will be available for parents of children with CF in the North-East Region. More information to follow in future issues of Spectrum.

Limerick: TLC4CF held a meeting with Minister Mary Harney, TD in relation to the proposed new CF facilities in Limerick. Issues raised included resources for the new units from the HSE for capital and staff costs and for the decanting costs arsing from a canteen.

The possible delay in/non-replacement of the Physiotherapist for CF Children in Limerick is a matter of strong concern. This issue has been raised with the hospital CEO and senior HSE officials in the region.

After the meeting between TLC4CF and Minister for Health and Children, Mary Harney, TD on CF plans for LimerickHospital. L-R Timmy Dooley, TD, Clare; Liam O’Kelly, TLC4CF; Dr Michael Mahoney, Mid-West Hospital, Limerick; Linda Drennan, TLC4CF; Owen Kirby, TLC4CF; Caitriona McDonagh, TLC4CF; Marcella Clancy, TLC4CF; Philip Watt, CFAI; Tony Killeen, TD, Clare and Minister of Defence

South-West Regional Meeting

A Regional Meeting for everyone concerned about CF in the South-West Region, in particular Cork and Kerry, and those attending Cork University Hospital (CUH), will be taking place on Thursday 1st July in the Oriel House Hotel, Ballincollig, Co Cork.

The meeting will not only allow you the opportunity to meet other parents, but also to keep informed on recent progress in this area and key issues surrounding services available in Cork University Hospital, and nationally.

A Registration form must be completed to confirm attendance; please contact Suzanne Brock at CF House by calling 01 496 2433or email for more information.

NB:Please note cross infection guidelines apply for PWCF.

Newborn Screening for Children with CF

The screening of newborn children for CF has been a long cherished ambition of the CFAI. The benefits of early detection and management of CF has been supported by recent research in Ireland(Delayed cystic fibrosis presentation in children in the absence of newborn screening, Irish Medical Journal, 2010 Apr;103(4):113-6).

The CFAI is actively involved in the HSE steering group established to co-ordinate this initiative, which will be introduced in the final quarter of 2010. The CFAI is planning to organise an information seminar on newborn screening in October 2010, so watch this space for details. When introduced, CF will be the most common disorder that is screened for as part of the ‘heel prick test’. An initial positive test will result in a ‘sweat test’ to confirm whether a baby has CF. More details will become available in the Autumn of 2010.

Newborn babies are presently screened for:

• Pheylketonuria
• Congenital Hypothyroidism
• Maple Syrup Urine Disease
• Classical Galactosaemia
• Homosystinuria

Travel Insurance Update

As schools close for the summer, the holiday season is in full swing. PWCF and their families are packing their suitcases and heading off all over the world. The issue of travel insurance has come to light this year as many families are finding it difficult to get cover for CF. The vast majority of travel insurance sold in Irelanddoes not cover pre-existing medical conditions such as Cystic Fibrosis. In addition, some companies that claim to cover pre-existing conditions may decline to insure you if you have recently received hospital treatment. You may therefore have to approach several different companies and shop around before you find a suitable policy for the duration and location of your holiday.Below are some points that you should take into consideration when thinking about travel insurance.

Where in the world

Travel insurance can be broken down in to three main worldwide geographical areas; Europe, Worldwide including the US and Canada, and Worldwide excluding US and Canada. Travel insurance is not valid in Ireland and most policies only commence once you have booked a return tripfrom Ireland. If you are travelling in Europe and require only emergency medical cover you can get covered on the European Health Insurance Card, which is a medical card that entitles PWCF to free health cover when visiting a member state if they become ill there. The European Health Insurance card will not cover the cost of air ambulance home or any extra costs as a result of a prolonged stay abroad.

Length of time away

The length of time you can take out travel insurance for ranges from 24 hrs to over one year, for PWCF it can be more difficult to get travel insurance for more than 30 days. You can take worldwide multi-trip policies( that can cover you up to 60 days if you have Vhi. Vhi also have a policy called Vhi Global–this is an International Private Health Insurance for Irish residents who are moving, travelling or studying abroad for more than 6 months and who intend to return to live in Ireland at a future date; however, you must be a Vhi member for over five years to avail of this policy to cover your CF. You can buy this travel policy via Fortis insurance brokers in the UK; they offer policies up to 18 months for a single trip. You can contact Fortis directly at 00448445577942 and you should ask for Fiona.

Irish travel insurance companies

The vast majority of travel insurance sold in Ireland does not cover pre-existing medical conditions such as Cystic Fibrosis. ACE insurance who covered PWCF in the past are now only quoting PWCF via AIB travel Insurance at 1850 404 204. They will cover PWCFs and all you need is a letter from your doctor dated 5 days prior to travel and answer the set of questions in relation to your condition.

Private travel health insurance

Vhi: Vhi have a Multi-Trip cover especially designed to complement the Assist cover on your Vhi Healthcare Hospital Plan. Therefore, you must hold a private health insurance policy with Vhi to avail of it. If you discontinue your Vhi Healthcare Hospital Plan, your Multi-Trip policy is automatically cancelled too. There are no refunds of any premiums paid on Your Travel Policy.

Unlike most other travel insurance plans on the market, multi-trip from Vhi Healthcare includes cover for pre-existing conditions up to the full limit of your medical cover.

• Quinn and Hibernian Aviva: Quinn and Hibernian Aviva insurance is underwritten by ACE insurance so contact your insurer to see if they will cover CF before you buy any travel insurance from them.

UK Travel Insurance

The travel insurance industry is much larger in the UK and, as in Ireland, many travel insurance policies do not cover pre-existing medical conditions. Also, many of the insurance companies do not cover persons who are not resident in the UK so the majority of policies are out of reach of PWCF resident in Ireland.