A team from the Social Policy Research Unit at the University of York, funded by WellChild, are conducting research into the administration of painful and/or invasive procedures by parents of children with long-term health conditions.  This research is running from May 2014 to October 2015 and they are looking for support from parents who may be able to provide their own experiences of this.

They would like to better understand your experiences of undertaking the procedure, being trained to do the procedure, managing your child’s reactions to the procedures, how you think undertaking these procedures affects you, your child and your family, and any support needs arising from this.

If you feel that you could help with the research, further information is available at http://www.york.ac.uk/inst/spru/research/pdf/PEAPIPinf.pdf.

Alternatively, contact Gemma Spiers on 01904 321984, or at gemma.spiers@york.ac.uk.

Please see below a statement from Sir Neil McKay following today’s judgment in the High Court.

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.”