The National Institute for the Health and Clinical Excellence (NICE) is the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health.
Nice contact the experts and professional organisations who are concerned with the practice or service that they are investigating but they are keen to contact those who have first hand experience.
Patients and Carers can pinpoint the difficulties that they experience and suggest remedies.
Have you had experience of this heart ‘hybrid’ procedure for newborn babies?
The hybrid procedure is performed on babies born with hypoplastic left heart syndrome. It consists of two or three different procedures which have the overall aim of establishing blood flow to and from the left side of the heart. The hybrid procedure is performed soon after birth, in order to delay the time of complex open heart surgery (the Norwood operation) until the baby is older and better able to withstand the surgery. The hybrid procedure involves both surgery, in which bands are placed around the branches of the pulmonary artery, and catheterisation techniques, in which stents (metal mesh tubes) are inserted to keep the ductus arteriosus open.
The National Institute for Health & Clinical Excellence (NICE) will be drafting guidance to the NHS, determining whether the Hybrid procedure for interim management of hypoplastic left heart syndrome in newborns is safe and works well enough to be used more widely in the NHS by clinicians, such as consultants. This guidance will cover England, Wales and Scotland.
Patients who have experienced this procedure are invited to give their views by taking part in our written consultation i.e. reading our draft guidance and letting us know if you think we’ve got it right and what changes might be needed (patients and carers do not necessarily have to have had the procedure to take part in this)
If you would like to consider taking part in the consultation, let NICE know (the consultation should run from the 28th August to 25th September).
We would like to reassure you that patient comments really can make a difference, and previous comments have led to changes in our recommendations and the wording of our guidance.
A patient information guide will be available, and support can be offered by the Project Manager for Patient Involvement, Joanna Pearl, on: joanna.pearl@nice.org.uk or on 0207 067 4767.
All interested parties are welcomed and should contact Joanna (preferably by e-mail) in the first instance or can contact Action for Sick Children. You can also keep in touch with the progress of procedures by using the NICE website www.nice.org.uk |
