Our 2013 AGM is booked for the 1st June at Chester Zoo. We’d love to see you there for our short meeting and then into the zoo to see some real monkeys! See our events page for more information.
Would you like one of our car window stickers? They’re 21cm x 6cm and clingy rather than sticky so can be removed if you need to. Email us your name and address and how many you would like (up to 3) and we’ll get them in the post to you. While stocks last, UK only.
Well done to Emily Jardine who ran in the 2013 Dubai 10K back in January of this year. Emily and her supporters raised nearly £500 for the Association – amazing!
Good luck to David Barden who is cycling over 2,000 miles through Turkey, Georgia, Azerbaijan, Turkmenistan to Samarkand in Uzbekistan this spring. His fundraising page has already passed the £300 mark and is still climbing. Check out his fundraising page on Virgin Money Giving and show your support for him and our Association.
Thanks again to all our fundraisers and supporters who keep our Association going and able to help children with congenital heart disorders and their families. Keep up the good work.
We’ve put some photos up on our website from our recent event at Awesome Walls, Liverpool. Check out our gallery.
The Cardiology Team at Alder Hey are very excited by the arrival of a few bugs in clinic. No, don’t worry, not those kind of bugs. These are buzzing plastic lady-bugs!! These friendly little creatures are designed to help take the pain out of needles. They work by using natural pain relief in the
form of vibration to confuse your nerves and distraction to take your focus away from the needle. Vibration and distraction together help dull or eliminate sharp pain like needles.
Other departments in Alder Hey had tried them out and given how well they were received by patients, The Children’s Heart Association offered to fund three for the cardiology team. So if you are in clinic or on the ward and need a blood test, cannula, finger prick or injection and would like to give Buzzy a try, be sure to ask a member of staff. Be sure to let us know what you think of it.
Jessica Sellars (aged 14) was kind enough to let us take a photograph of her trying Buzzy. She had to have two injections, the first one was a while ago before we got our Ladybugs. When she had her second injection she tried “Buzzy” and said “it felt really cold on her arm but the second injection didn’t hurt as much as the first one”.
If you would like to watch some videos of Buzzy being demonstrated, learn more about it or would like to buy your own, visit the website at www.buzzy4shots.com.
On Friday 1st March we hosted a fashion show in Liverpool at the Days Inn hotel. After a lot of packing, shifting and unpacking (thanks Val & Val’s dad) we were ready to begin. There were 28 people who turned up to see the show. During the evening we had a disco, Irish bingo and raffles too. Afterwards, we had fish and chips with a glass of wine for the adults and soft drinks for the kids.
We’d like to say a big thank you to our models Kali and Ella who both did a grand job and we’re very grateful to you both for doing this. You both looked great in your outfits and the clothes sold as soon as you took each outfit off which was great.
I know all who came enjoyed the bargain hunting and some fantastic bargains were there to be had. Thanks to all who came and showed your support it’s very much appreciated and we made a profit of £453.
Please see below a statement from Sir Neil McKay following today’s judgment in the High Court.
Thursday, 7th March 2013
Sir Neil McKay CB, Chair of the Joint Committee of Primary Care Trusts said:
“I am very disappointed with the Court’s decision. The pressing need to reform children’s heart services is long overdue and experts have cautioned that further delay in achieving the necessary change would be a major set back in improving outcomes for children with heart disease.
“The judgment focuses on a single matter of process, but the case for the reconfiguration of children’s heart surgical services remains strong. There is a rare consensus on the need for change right across the board – NHS staff, medical royal colleges, professional associations and national charities all support the case for fewer larger surgical centres, new national quality standards and stronger networks of care.
“The consultation – which we undertook with an honest and open mind – was the largest carried out by the NHS and respondents were staunch in their support of the need for change. There is nothing in the Court’s judgment that supports the Claimant’s accusations that the consultation was a “rubber stamping” exercise. The judge in fact found that:
“This was a comprehensive consultation, lasting a matter of months and prompting 77,000 responses. Thought and care was given to the consultation process both as to its content and implementation. When considered necessary, independent work or advice was commissioned; professional groupings provided advice when requested. Those responsible for, and involved in, the setting up and implementation of this process aimed to provide one which was informed, detailed and transparent”.
“This case has focused on a narrow technical point relating to whether 450 sub-scores generated by the Kennedy panel should have been available to respondents to consultation. The Joint Committee of PCTs itself chose not to examine the sub-scores as it did not believe that it had either the expertise or the evidence to second-guess the panel’s conclusions. For the same reason the sub-scores would not have assisted respondents to consultation. Respondents were provided swathes of documentary evidence to consider during consultation, including a detailed 155 page narrative report prepared by the panel.
“The panel members agreed their scores after a rigorous on site assessment of the surgical units. I believe that most respondents – of whom there were around 77,000 – would have been very surprised had the JCPCT chosen to substitute its own scores for those of the independent panel, which is in essence the foundation of the Claimant’s case.
“We do not yet know what the Court will decide in terms of next steps. We are making representations to the Court that it should not quash the decision in its entirety as the Claimant seeks. Once we have the Court’s judgment on this point we will strongly consider the possibility of appeal.
“The Claimant wishes for the NHS to abandon its plans for the reconfiguration of children’s heart services against the express wishes of the vast majority of respondents to consultation. I never forget that the purpose of our work is saving lives and improving quality of life for children, and on behalf of the NHS I want to reassure families, patients and clinicians that we remain as determined as ever to reconfigure services for children with congenital heart disease in the interests of better outcomes and a more safe and sustainable service for children and their families.”
We didn’t have a great turn-out on the night however everyone that came really enjoyed themselves. It was great to see some new faces with our new members joining in and meeting others. It was fun to see one of our volunteers, Pearl, who does not normally gamble really enter into the spirit. She decided there would be no stopping her so she claimed the whole of the bottom of the table and set in to stay the night! There were some risk takers with one member winning the most amount of chips on the night deciding to bet it all on number four. On the very last spin it came up, winning them a bottle of Champagne.
Hope to see you all at our Dinner Dance in May.
On the 14th February lots of our members met up at Frankie and Benny’s in Liverpool for tea. The afternoon did not quite go to plan as we received a call from the restaurant about 2 hours before to say the booking had to be cancelled! It all managed to be sorted out and our 34 parents and children sat down to a nice meal and great chat together.
Have you signed the ePetition to roll out Pulse Oximetry screening for all newborns in the UK yet? If not, please do so now:
The CHF are compiling a report about good practice and also what families find useful from their Cardiac Liaison Nurses to ensure everyone can benefit from these forms of support in future.
If you could spare some time to assist by submitting your experiences then please follow this link to their online survey.
If you have any further questions, please contact the CHF: