In this section
Patient and Public Voice (PPV)
The Network would like to establish a Patient and Public Voice (PPV) forum for the North England Haemoglobinopathy Coordinating Centre (HCC) which would feed into the HCC Board via a nominated representative.
The proposed group would comprise of patient, parent, and carer representatives from paediatric and adult services with a view that representatives of children, adolescent, and adults are involved. The PPV Group would lead on decisions made by the HCC around engagement of the patient population and patient involvement in the aims of the HCC.
The PPV Group would be an integral part of the HCC and would lead, advise, coordinate, and report on progress in achieving the strategic aim of involving patients and the public for their views to affect decisions taken about the planning, improvement, monitoring and evaluation of all services within the network.
This proposal is currently under review by the Patient Experience team at Manchester University NHS Foundation Trust.
Your voice
We are conducting a series of surveys to assess patient and parent / carer experiences within haematology services across North England.
We know that you may have filled several of these surveys before, but your answers will provide valuable feedback on the quality of care received by patients and will help us to know what is working well and what needs improving in your current service.
We are committed to ensuring you receive the best care and overall experience, so we welcome all your comments. All comments will be shared with your team anonymously to help drive service improvement. Through a number of questions, we will be asking you to guide us through your experience of haematology services.
Thalassaemia
Click here to complete the survey or scan the QR code below.
Note: if you experience problems opening the link please select “open in browser” option.
Now you have transferred from Children and Young People’s Unit to Adult Services, we would like to know what your experience has been of this process. Understanding your experience will help us to improve this process for other young people in the future. Thank you for taking the time to complete this short survey.
Click here to complete the survey or scan the QR code below.
Note: if you experience problems opening the link please select “open in browser” option.
Click here to complete the survey or scan the QR code below.
Note: if you experience problems opening the link please select “open in browser” option.
Click here to complete the survey or scan the QR Code below.
Note: if you experience problems opening the link please select “open in browser” option.
Sickle Cell
Click here to complete the survey or scan the QR Code.
Note: if you experience problems opening the link please select “open in browser” option.
Click here to complete the survey or scan the QR code below.
Note: if you experience problems opening the link please select “open in browser” option.
The questionnaire is for children aged 8-15 years with sickle cell. This survey is being
conducted only in the UK – the questionnaire has been developed and tested based on care in
England.
The young person with sickle cell should complete the questionnaire on his or her own
where possible. Where they are unable, their parent/carer can complete it on their behalf or
alongside the young person, but please complete it from their viewpoint.
Click here to complete the survey or scan the QR code below.
Note: if you experience problems opening the link please select “open in browser” option.
