Dr Lorna Bennett, The Archbishop of York and (our Director) Dr As'ah Nkohkwo at the launch

Adult standards - what you need to know

The adult standards include advice and recommendations for all healthcare professionals caring for people with Sickle Cell Disease (SCD). Here's a summary of the key points:

Primary Care:

• GPs to provide written information regarding approaches to preventing and managing symptoms at home
• Support to be given to community practitioners from specialist centres

Hospital Services:

• Specialist hospital clinics available for all people with SCD
• Specialist networks to provide guidance and support for local hospitals including management of common sickle cell presentations at A&E

Managing Acute Complications:

• Patients suffering from a pain crisis to be treated within 30 minutes
• Hospitals should have a protocol in place for managing acute chest syndrome

Managing Chronic Complications:

• The cause of chronic pain to be established as far as possible
• Patients with stroke should undergo urgent neuroimaging

Pregnancy, Contraception and Fertility

• Genetic screening and partner testing to be offered to all men and women with SCD

Blood Transfusion

• Patients undergoing transfusions to be regularly monitored for iron overload
• Iron chelation should be started in all regularly transfused patients when repeated serum ferritin levels are >1000mg/l

Surgery and Specific Therapies

• New therapies to be discussed with patients and if the local hospital is unable to provide them, a clear pathway should be made for provision of care

Networks For Care

• Patients to have access to a range of services including regular care close to home and complex care at specialist centres

Education and Training

• Patients to be educated about their condition and healthcare professionals to receive relevant training

Adequate Resources

• Services to be commissioned to support highest quality clinical management

The Standards of Clinical Care of Adults with Sickle Cell Disease were developed through an unrestricted educational grant from Novartis Oncology which covered the cost of the Secretariat. A full copy of the Standards of Clinical Care for Adults with Sickle Cell Disease is available from the Sickle Cell Society at www.sicklecellsociety.org or by calling 020 8961 7795 for a hard copy.

"The publication of the standards is a major milestone, but it's important that momentum is maintained so they become widely known and adopted throughout the UK," says Sickle Cell Society trustee Dr Lorna Bennett. Here are some suggestions as to how service users can play their part in this:

• Next time you have an appointment with your GP, haematologist or other healthcare professional why not take a copy of the standards and ask if they are aware of them?
• If you're a member of a patient or other local support group, bring copies to your next meeting to make sure others with sickle cell know about the launch.