Sickle Cell Service Review 2018
NHS England is planning changes to how Sickle Cell related care is provided during short and long-stay admissions to hospital.

We want to know your thoughts about these changes. Your views will inform the changes, enable us to feed back important information to NHS England, and help guide what happens next.

We would like to keep you updated about the progress of this work.  However, if you do not wish to take part any further, just tell us your preferences at the end of this form.

We will treat your responses anonymously and we will not share your details.  We will keep this information only for this purpose.

Many thanks for your time and input.

The Sickle Cell Society

PLEASE COMPLETE THIS SURVEY BY 31 JULY 2018

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Having read about the proposed changes from the information provided, do you understand what is being proposed? *
No, not at all
Yes, I understand clearly
Please explain why you are clear, or not clear, about the proposed changes *
NHS England plans to introduce Haemoglobinopathy Coordinating Centres (HCCs) in specific areas across England. They will be responsible for leadership, education and standards of care. How do you think HCCs could help improve care where you live?
What priorities do you think Haemoglobinopathy Coordinating Centres should focus on?  List three priorities if possible.
NHS England plan to set up a National Haemoglobinopathy Panel. The Panel will accept referrals about difficult clinical cases and consider which individuals would benefit most from new treatments. Please tell us why you think this is a good idea or what, if any, concerns you have about this.
The National Haemoglobinopathy Register keeps details of people with red blood cell disorders to monitor and learn from their treatments. How do you think the Register could be used to better manage care for people with Sickle Cell disease?
What else, if anything, would you like to see in the proposed NHS England plans?
Please add any further comments you would like to make.
Would you like us to update you about the progress of the consultation? (You can withdraw your consent at any time by emailing info@sicklecellsociety.org) *
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