Spectrum: Autumn Issue

Head Count

Record number of participants take part in the annual Head 2 Head Walk

LATEST NEWS:

New Organ Donation Consent will improve the chance of a ‘Gift of Life’

As TDs get set to return from the summer recess, and in wake of RTE’s excellent documentary on Orla Tinsley’s transplant, CFI renewed its call on Government for the introduction of presumed consent organ donation legislation – also known as soft opt-out organ donation – to improve transplant rates in Ireland.

The call comes against a backdrop of most recent figures showing 600 people waiting for potentially life-changing organ transplants in Ireland in 2017. Ireland lies in 15th place out of 28 European Union countries when it comes to organ donation, despite very high levels of public support.

International evidence has confirmed the positive impact of opt-out consent on deceased organ donor rates. Over a three-year period, after making the change to an opt-out system, Belgium saw its rate of organ donation increase by 100 per cent. The recent experience in Wales with soft opt-out has also been very positive. The countries with the best rates of organ donation in Europe have some form of soft opt-out system, combined with sufficient infrastructure.

Introducing a soft opt-out organ donor consent system will undoubtedly save more lives and help to ensure our organ donor system is fit for the 21st century.

Ireland is one of the last countries in Europe, along with Scotland, Northern Ireland and England, not to have presumed consent when it comes to organ donation. The number of people awaiting life-saving organ transplants in Ireland is more than double the operations carried out.

Bringing in this new legislation will also bridge the gap between people’s intentions and their behaviour. 85 per cent of people in Ireland are willing to donate organs but only one third of us carry an organ donor card and many of us do not inform our next of kin of our intentions to donate or otherwise.

Organ donation will always be a ‘gift of life’. With this proposed new system, next of kin will continue to be consulted so no family will be forced to donate the organs of a loved one should they not wish to do so. There will also be an online register for opting out of organ donation.

We are delighted to let you know that Minister Simon Harris recently tweeted his commitment to implementing new legislation.

SPOTLIGHT:

Education

The recent Independent Living Report produced by Cystic Fibrosis Ireland highlighted that education is still an area where people with cystic fibrosis (PWCF) face enormous challenges due to their chronic illness. The report showed that there has been a significant increase in PWCF obtaining third level qualifications. However, cystic fibrosis continues to cause significant periods of absenteeism from school or college which causes an associated impact on the ability to perform.

For this Spotlight segment we hear from members of the CF community at different stages of education who tell us the impact CF has on their education and how they manage study and treatment.

The FIrst Day of School from a Dad’s Perspective.

Our first born, Caoimhe, started ‘big’ school in Gaeilscoil Uí Fhiach on the 29th August. She looked so young and small in her oversized uniform, but she was beaming from ear to ear to see all her friends again.

Caoimhe had attended the Naoinra pre-school for two years prior to beginning primary school and she already knew a number of other children beginning their first year along with her. This, for us as parents, was a huge relief as my wife Grainne already knew so many of the parents and they also knew and understood our ‘situation’. Both of our girls Caoimhe and Fiadh have cystic fibrosis.

Although Caoimhe was excited, I could see that she was also very anxious. This was a huge milestone in her life and also a big change for her. As a father letting go of my baby girl’s hand and watching her walk into the classroom and sit on her tiny chair was very overwhelming especially as we have the added stress of her condition but she took to it like a pro. Caoimhe has been assigned a special needs assistant (SNA) to make sure she eats her lunch, takes her creon, washes her hands etc. Although Caoimhe isn’t aware that she has someone watching over her it gives us some sense of reassurance when she isn’t with us.

I know as a family we will face so many challenges with our two girls but as school is going to be a major part of their lives we will strive to keep everything as normal as possible for them.

I am generally a very positive person and I am very optimistic for the future of our kids health and education.Caoimhín Ó Lúing

HOSPITAL HUB My CF Story

As part of a quality improvement project at Our Lady’s Children’s Hospital Crumlin (OLCHC) in 2016, our CF team created a patient handheld record for families and their children with cystic fibrosis (CF). These records have been shown to encourage and improve self-management in people with chronic illnesses. Many parents of children with CF come to clinic with their own diary or record of their child’s CF treatments. We wanted to develop a record that would provide families with a single place to store their clinical data and log questions about CF.

We initially piloted a paper handheld record with a number of families of younger children with CF. The pilot was a great success and every parent felt that the handheld record was user friendly and that it would improve communication between them and the CF team. Many parents switched over to using the handheld record instead of their own diaries. Many also requested that an electronic version be developed. Our pilot study demonstrated that there was a real demand from families for this valuable tool. CF Ireland kindly agreed to fund the project so we set about developing an app to incorporate the requests and feedback from parents and staff collected during the pilot study.

The app provides children and their parents with their own personal healthcare record which contains information about their CF. The app has been designed to allow children and their parents to keep together all the information that they may need to help manage their CF care. The app has three different formats depending on the child’s age, namely 0-5, 6-11 and 12-18 years, and adjusts the phrasing and content to suit the child’s age. As the app was developed by the OLCHC CF unit, much of the content directly relates to how children with CF are managed at OLCHC.

We envisage that parents and older children with smart phones will open the app while at CF clinic to access any clinical information or questions which have been logged over the past few months. We think of the app like a storybook of lots of important information about CF that families can access whenever they need and this is why we called the app “My CF Story”. We hope that families will find this app empowering and that it will become an integral tool in managing their child’s CF. If the app proves successful, we would like to roll out a national version incorporating the needs of parents and children with CF across the country.

We would like to give a special thanks to all the families who contributed their time to the pilot study and evolution of the app. We must also recognise the contribution of all the staff at the OLCHC CF unit who assembled the main structure and content on the app. Finally, a big thanks must go to CF Ireland who generously funded the development of this app and it would not have been possible to bring this project to fruition without their help and support.

Dr. Des Cox, Consultant in Paediatric Respiratory Medicine, Our Lady’s Children’s Hospital, Crumlin

MEMBER SERVICES Noticeboard

Schools and Cystic Fibrosis Booklet

Back to School Offer!

Get your copy of CF Ireland’s latest publication “School and Cystic Fibrosis”.

This booklet is a useful resource for schools, teachers and parents whether your child is starting school, changing schools or has a new teacher. While recognising that every child with CF is different, the booklet provides information about varying aspects of CF and its implications at school.

Order your copy by phoning 01 496 2433 or emailing Nuala at nmcauley@cfireland.ie. Booklets can be sent to parents or directly to the school and are also available to download from our website

https://www.cfireland.ie/cfi-services/publications/item/387-school-andcf

Did you know?

From the 1st September 2018 all persons in receipt of Carer’s Allowance or Carer’s Benefit are able to attend a GP free of charge. Registration is now open and applies to carers who are currently in receipt of either full or half rate Carer’s Allowance or Carer’s Benefit, and who do not currently hold a Medical or GP Visit card.

All carers who already hold active Medical Card or GP Visit Card eligibility from a previous application retain this eligibility. There is no requirement for them to also register for eligibility on the GP Visit Card for the Carers scheme.

Further information on the scheme is available on www. medicalcard.ie or by calling 1890 282 919.

To register: https://www.hse.ie/eng/cards-schemes/ gp-visit-cards/gp-visit-card-for-carers/gp-visit-card-forcarers-english-registration-form.pdf