Co-designing effective sickle cell services
of this service in areas where there is a high prevalence of sickle cell patients , but access to care is limited or non-existent .
Thanks to this collaborative effort , we were able to secure £ 1.5m in funding to work with NHS England Specialised Commissioning and distribute 25 new Spectra Optia Apheresis System devices in 22 trusts across England . This investment in more devices could provide an additional 10,000 apheresis procedures annually , meaning that more people who need automated red cell exchange could access this service .
Co-designing effective sickle cell services
Patient experience is fundamental to designing services that deliver effective care . To do this , we collaborated with NHS England ’ s Patient and Public Involvement and Engagement Team within the Innovation , Research and Life Sciences Group , Haemoglobinopathy Coordination Centres , and the Sickle Cell Society .
Together , we conducted a national survey and webinar . Acknowledging the considerable challenges confronted by patients with this condition in accessing necessary care , the insights gathered from the survey and webinar provided a clearer understanding of the obstacles faced by sickle cell patients in accessing services .
Analysis of the survey results and conversations during the webinar indicated a need for change across five priority areas within the sickle cell treatment pathway :
• More emphasis on informed decision making .
• Better and more appropriate access to out of hours care .
• More thought given to the impact of travel and transport .
• Greater understanding of the barriers in attending treatment : pain , fatigue and waiting times .
• The importance of effective pain relief : the wait , under prescribing and overdose .
We have already implemented several initiatives to improve services . We have worked with Terumo and the Sickle Cell Society to produce an avatar in English and French to help patients understand their treatment options and how automated red blood cell exchange is not just for emergencies , but can be accessed routinely every few weeks by eligible patients .
We are currently helping all ten Haemoglobinopathy Co-ordination Centres across England to look at their sickle cell populations and devise costeffective options for the expansion of their services .
We are also working with NHS Blood and Transplant to deliver education and training to emergency department staff , enhancing their understanding of the disease and the specific needs of patients seeking care . Improving care for people living with sickle cell disease
23 Transforming Lives Through Innovation