The Sickle Cell Society receives funding from London Councils for its work to encourage people to take up Direct Payments and ensure people with disabilities and carers get the benefits they are entitled to.  The service is provided to 30 out of the 33 London boroughs.  

The episodic nature of sickle cell disorder and its variability among different individuals makes the condition a perfect candidate for the flexibility and financial control afforded by Direct Payments and other methods of self-directed care.  Beatrice* the mother of a child with sickle cell explains how was taking up Direct Payments has benefited her…

Beatrice's story

 "I have known the Hackney Sickle Link and the Society since 1998.  Oh no, it is a long time ago!  I am a single parent.  I suffer from another disease and my nine year old son has sickle cell. 

The Society encouraged me recently to take up Direct Payments.  As my condition deteriorated things became very difficult for me.  You know, with all the medication I am having, there are days I cannot even get out of bed let alone ensure that my little one gets himself ready for school. 

I have been given 15 hours a week which is three hours a day.  I still feel this is not sufficient for me and my boy – I need more, someone to take my boy to the park at weekends. 

Let me not complain too much, it has been fantastic since I took up Direct Payment last year.  I am now in control.  I know my carers, they understood my situation, they would even go a mile to make sure I do not experience any stress.  For instance they accompany me to the hospital when my son is having blood transfusion; they're very supportive and always willing to help, even at odd times".

* Not her real name