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.

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.

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.

http://www.specialisedservices.nhs.uk/news/view/139

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.”

What happens next?

Safe and Sustainable will continue. The NHS is determined to reconfigure services in England for children with congenital heart disease. Patients, families and NHS staff have waited too long for change. Professional associations, medical royal colleges, national charities and independent experts first called for change following the tragic circumstances of unnecessary deaths following heart surgery at Bristol nearly two decades ago.

We need to understand whether the Court will quash the JCPCT’s decision in its entirety, as the Claimant seeks, or whether it will impose a less draconian remedy. We are making representations to the Court that a quashing of the decision would be unfair and unnecessary. Once we have the Court’s judgment on this point we will strongly consider an appeal if we believe that this would enable us to reach a final decision on reconfiguring children’s heart services in a reasonable timeframe.

There are several elements of ongoing work of planning for implementation that will continue. The Clinical Implementation Advisory Group (comprising representatives of the relevant professional associations) will continue its work to develop new quality standards for Children’s Cardiology Centres and District Children’s Cardiology Services, and the development of Children’s Congenital Heart Networks. 

Professor Terence Stephenson, Chairman of the Academy of Medical Royal Colleges, said:

“The Academy recognised that the Safe and Sustainable review concluded that fewer larger surgical centres and the development of local networks of care will improve cardiac services for children based on the evidence of their review of the evidence linking volume of cases to outcomes. Change remains a matter of urgency – it is 12 years since the report of the Bristol Inquiry was published and patients have waited too long for improvements to be made.”

Professor Sir Roger Boyle CBE, former national director for heart disease and stroke commented:
“After waiting so long for change and coming so close to making real improvements for children with congenital heart disease, it is very disappointing to hear that Save Our Surgery’s judicial review has been upheld on a technicality. There is widespread support among the medical royal colleges and professional associations for pooling children’s heart surgery into fewer, larger centres and developing networks of care. Parents and clinicians across the country have been calling for change for many years. The quality and safety of the service is paramount and further delay is most unwelcome. Making changes to NHS services is never easy but I call upon the NHS to redouble its efforts and ensure these vital improvements are introduced as quickly as possible. It’s incumbent on the NHS to see this through; anything short of that would be to fail children and their families across the country.”

Hope to see you all at our Dinner Dance in May.

http://epetitions.direct.gov.uk/petitions/37286

If you could spare some time to assist by submitting your experiences then please follow this link to their online survey.

2013 CLN Survey: https://docs.google.com/spreadsheet/viewform?formkey=dHVBTDhzX1RpdW5KX2FaVmZaWWdyZFE6MQ.

If you have any further questions, please contact the CHF:

Web: www.chfed.org.uk
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Twitter:@chfed