Sickle cell disease: managing acute painful episodes in hospital

Your care

In the NHS, patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution (www.dh.gov.uk/en/DH_132961). All NICE guidance is written to reflect these. You have the right to be involved in discussions and make informed decisions about your treatment and care with your healthcare team. Your choices are important and healthcare professionals should support these wherever possible. You should be treated with dignity and respect.

To help you make decisions, healthcare professionals should explain acute painful sickle cell episodes and the possible treatments for them. They should cover possible benefits and risks related to your personal circumstances. You should be given relevant information that is suitable for you and reflects any religious, ethnic or cultural needs you have. It should also take into account whether you have any physical or learning disability, sight or hearing problem or language difficulties. You should have access to an interpreter or advocate (someone who helps you put your views across) if needed.

Your family and carers should be given their own information and support. If you agree, they should also have the chance to be involved in decisions about your care.

You should be able to discuss or review your care as your treatment progresses, or your circumstances change. This may include changing your mind about your treatment or care. If you have made an 'advance decision' (known as a 'living will' in the past) in which you have already given instructions about any treatments that you do not wish to have, your healthcare professionals have a legal obligation to take this into account.

All treatment and care should be given with your informed consent. If, during the course of your illness, you are not able to make decisions about your care, your healthcare professionals have a duty to talk to your family or carers unless you have specifically asked them not to. Healthcare professionals should follow the Department of Health's advice on consent (www.dh.gov.uk/en/DH_103643) and the code of practice for the Mental Capacity Act. Information about the Act and consent issues is available from www.nhs.uk/CarersDirect/moneyandlegal/legal. In Wales healthcare professionals should follow advice on consent from the Welsh Government (www.wales.nhs.uk/consent).

In an emergency, healthcare professionals may give treatment immediately, without obtaining your informed consent, when it is in your best interests.

If you are under 16, your parents or carers will need to agree to your treatment, unless it is clear that you fully understand the treatment and can give your own consent. In an emergency, if your parents or carers cannot be contacted, healthcare professionals may give treatment immediately when it is in your best interests.