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Press Release

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Haemoglobinopathy service holds Patient and Family Education and Engagement Day
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Press release date02/07/2019
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Summary
The Haemoglobinopathy Service at Leicester’s Hospitals held its first ever Patient and Family Education and Engagement Day on Saturday 22 June 2019 at the National Space Centre in Leicester, with the support of Leicester Hospitals Charity.
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The Haemoglobinopathy team and patient and family volunteers The Haemoglobinopathy team and patient and family volunteers
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Press release

The Haemoglobinopathy Service is a specialist centre for patients in Leicester, Leicestershire, Rutland, Kettering and Northamptonshire.


Haemoglobinopathy is an inherited genetic disorder of haemoglobin within the red blood cells. Haemoglobin gives blood its red colour and is responsible for carrying oxygen around the body. The most common haemoglobinopathies are Sickle Cell Disease and Thalassaemia. These conditions are chronic and debilitating to the individual and their families.


They affect mostly (but not exclusively) people whose ancestors originate from Africa, the Caribbean, the Mediterranean, Middle East, India, Pakistan, Bangladesh and Asia.


Almost 100 participants attended the event, as well as staff and their family members who volunteered and helped out. There was also special entertainment by the De Montfort University Choir of Britain’s Got Talent fame.


Dr Amy Webster, Lead Consultant Haematologist at Leicester’s Hospitals, welcomed and opened the event, followed by keynote speaker Professor Dr Simon Dyson of De Montfort University, and Ms Rebecca Sekyere, Lead Nurse Specialist of the Sickle Cell and Thalassaemia Service at Leicester’s Hospitals.


Professor Dyson has extensively researched the sociological effect of Sickle Cell and Thalassaemia, and was able to share his research findings which have led to development of a school policy – a copy of which was given to the attendees.


Rebecca said, “The event was a success and beyond our expectation. All staff, Clinical Nurse Specialists in the team from Leicester, Kettering and Northampton, our Lead Consultant Haematologist Dr Amy Webster, and East Midlands Data Manager and the support staff worked together as team.”


“The aim of this event was for patients and family members to learn about their condition and be able to take control of managing themselves in partnership with the Specialist and the Primary Care teams, both in secondary care and in the community.


“We gave advice on how to troubleshoot any issues before seeking hospitalisation, and patients and families were informed about the future direction of the service.”


The event was also used to encourage patient and carer representation in moving the Service forward, and to discuss Patient Support Groups. Feedback was also sought from patients and families about their experience. 


Rebecca continued, “Overall, ninety percent of our patients and their families are satisfied with their experience with the service. Sixty five percent scored their experience as very good, and twenty five percent scored their experience with the service as good. 


“One Patient scored poor but stated this was before they had been appointed a Nurse Specialist in Northampton. Only one person scored their experience as average.”


ENDS



Notes to editor


Following the event, eight patients and their families volunteered to be patient representatives. Eighteen out of twenty responders would like to attend a similar event again in the future. Two did not answer this question.


Comments received from patients and their families:

“Information sharing today was brilliant.” – Anonymous.

“I find it very helpful having a direct contact with a Sickle Cell Nurse.” – Anonymous.


Contact information:
Contact information
For any media enquiries, please contact:
Robert Knowles
Communications Officer
robert.knowles@uhl-tr.nhs.uk
0116 258 8761
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Press release number
6838
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Rebecca Sekyere, Lead Nurse Specialist of the Sickle Cell and Thalassaemia Service at Leicester’s Hospitals giving a talk about the complications of Sickle cell Disease
Rebecca Sekyere, Lead Nurse Specialist of the Sickle Cell and Thalassaemia Service at Leicester's Hospitals giving a talk about the complications of Sickle cell Disease