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.  But sickle cell sufferer Andrea* was initially unsure taking up Direct Payments as she explains…

Andrea's story

 "I just want to share how happy I am now and my appreciation to the Society through its regional care adviser for the great work they have been doing. I am a single parent living with my two children ages five and seven.   I suffer from sickle cell as does one of my children.  When the Society informed me about Direct Payments, I was very reluctant at first and scared.  My friend told me that it would not benefit me in anyway and that it was too much hassle and very time consuming. Let social services provide the service she said.  However, when the regional care adviser explained along with the social worker how it works and the importance of being independent and in control of my own budget I decided to give it a try. 

At the moment I have two carers, one in the morning and the other in the evening and there is a neighbour who I have known since I moved here.  She has been supporting me especially with the children. 

When I am admitted into hospital, the children stay with her.  She is a standby to provide support whenever I am admitted, instead of putting my children in a home.  

I only need the carers when I am in crisis, or spending a day at the hospital for blood transfusion or being discharged from hospital.  I have been given five hours a week of help.  The morning carer helps me with the children, gets them ready for school and the evening carer picks them up and prepares evening meals for them.