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PLEASE HELP: Feedback for NHS England

Posted: 05.05.17

If you or your family member(s) receive care and services linked to an ultra-rare disease, such as Niemann-Pick, we need your help.

In order to bring about change and improvement in the care and services you receive, Niemann-Pick UK has been asked to provide feedback to NHS England.  By participating in a short, but highly important survey, you could help to influence this process and enhance future care for those affected by Niemann-Pick and other ultra-rare diseases.shot-1222

The survey will take just a few minutes of your time and will give you the opportunity to share your views, anonymously and in confidence, about the services you receive. The results of the survey will inform an anonymous report that will be presented at the annual Lysosomal Storage Disorders (LSD) Commissioning for Quality and Innovation (CQUIN) meeting by members of the UK LSD Patient Collaborative.

The UK LSD Patient Collaborative is comprised of seven patient organisations, including Niemann-Pick UK, who have joined together to create a strong lobbying and action group for LSD patients and their families in the UK.  By working together, the Collaborative aims to further understanding of LSDs, to advance standards of care and to enhance the wellbeing of those affected by LSDs.

Please take a moment to complete this important survey; you can do this in one of the following ways:

  1. On-line, via Survey Monkey
  2. Complete and return a paper copy (by request email or telephone 0191 4150693)
  3. Provide your responses via a short telephone interview – to arrange email or telephone 0191 4150693

Please return your responses on or before Friday 9th June 2017. Thank you in advance for taking the time to share your valuable insights with us; your contribution will positively impact upon the care and treatment of patients in the future.

If you would like to discuss this survey or learn more about the UK LSD Collaborative, please contact a member of the NPUK Team: email or telephone 0191 4150693