NCEPOD Survey - Long Term Ventilation

NCEPOD Survey - Long Term Ventilation

Feb 25, 2019
National Confidential Enquiry into Patient Outcome and Death (NCEPOD) ​is currently working on a study to explore the quality of care received by children and young people on long-term ventilation (LTV) aged 0-24 years.

They will produce a report for doctors, nurses, and other professionals about how to improve the care they deliver and guidance for patients and families on what care you should expect to receive.

Information is being collected across the whole of the UK, and as part of this project they are asking patients and parent carers for their views via an online survey.

For more information about the study, download the information poster below, or visit the NCEPOD website. 

NCEPOD data collection poster_patient_parent_carers (PDF)

 
 
 
 


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  • I really love going to the hospice. I’ve made friends there and get to do loads of fun stuff. Renee
  • EACH has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • We arrived at the hospice feeling scared and alone. We had so many questions – they answered them all and more. Claire, Jacob’s mum
  • When we first heard about the hospice we were apprehensive because we didn’t know what to expect. When we got there we realised it was a lovely place where Renee would be well looked after, and we would be able to have a much-needed break. Stacy, Renee’s mum
  • Renee loves going to The Treehouse, but it’s great that care staff are also able to visit us at home too. Stacy, Renee’s mum
  • I can’t imagine what it would have been like. Nobody should have to, every family should be offered the support we were, and are still getting Claire, Jacob’s mum
  • The play specialists are excellent and I also get inspiration from the activities they organise. Heather, Lucy’s mum
  • We are also supported by the 24/7 True Colours nurses and it’s so reassuring knowing we can call on them whenever we need support or advice Helen, William’s mum
  • EACH helped us with coping mechanisms and special ways of remembering Stanley. Brad, Stanley's Dad
  • I didn’t realise hope was a gift until I became a mum. My little boy taught me many things and that was one of them Claire, Jacob’s mum
  • It’s been a great opportunity to meet other parents in a similar situation, something that doesn't really happen anywhere else. Helen, William’s mum
  • EACH helps us to create lovely memories and has played an important part in all of our lives, not just Lucy’s. Heather, Lucy’s mum
  • EACH supports families when they’re at their absolute lowest, helping them to come to terms with their child’s illness, losing them and beyond Brad, Stanley's Dad
  • Children like Lucy don’t get the opportunity to go to sleepovers or to their friends for tea, so the interaction she has at the hospice is priceless. Heather, Lucy’s mum

The Treehouse

St. Augustine’s Gardens,
Ipswich, IP3 8NS

Milton

Church Lane, Milton,
Cambridge, CB24 6AB

Quidenham

Quidenham , Norwich,
Norfolk, NR16 2PH