+truth Hello and thanks for your post. Adjusting to life when caring ends can prove stressful. Satisfying the job seeking conditions to get benefits may add to the stress. There may be other benefits available to you or other ways of satisfying the jobs seeking conditions. For further information about your rights you can call our freephone helpline to speak to a benefits advisor. Call 0808 808 3555 (9.30-5.00 Mon-Fri) or email [email protected]. You may also be interested in information on the Carers UK website `When caring ends’. For further information visit: www.carersuk.org/help-and-advice/practical-support/when-caring-ends/rebuilding-your-life I hope this is helpful. If you would like more information or to talk to someone, please feel free to contact the helpline also. Best wishes Contact a Family Parent Adviser

+Contact a Family Not much support there,i tried ringing them

+truth Hello and thanks again for your posts. I’m sorry that you have not found the support that you are looking for. We are not sure if you have tried contacting our helpline on 0808 808 3555 (Mon-Fri, 9.30am-5pm) or if you are referring to something else. If you would like to speak to someone about your situation or find some local support, please contact us again and our parent advisers will do our best to help. Best Wishes - Parent Adviser - Contact a Family

+Abdul Jabbar Shaik Hello , Thanks for your post. Unfortunately advisers on the helpline are not medically qualified and neither do we specialise in one condition. This means we may not be able to answer questions about your daughter’s condition and treatment. You should discuss such concerns with the medical specialist responsible for your daughter’s care. If you live in the UK then you can also contact our helpline for information about support and services. You can either email to [email protected] or telephone freephone 0808 808 3555 (9.30-5.00 Mon-Fri). Best wishes Parent Adviser

+k1278k Hello, Thanks for your post. Unfortunately we’re not able to put you in contact with parent in the podcast but you may be interested in our web based linking service at www.makingcontact.org. Here, parents can register a profile on the site and contact other parents whose children are affected by the same condition. For information there are 4 people registered against this condition: makingcontact.org/index.php?ci=1128 . You may also live in an area where we have someone you can contact for information about local support. You can find out from this link: www.cafamily.org.uk/advice-and-support/in-your-area/. Alternatively you can contact our freephone helpline for information about local support or any other issue about helping your child. If you would like more information or to talk to someone, please feel free to contact the helpline also. You can either email to [email protected] or telephone freephone 0808 808 3555 (9.30-5.00 Mon-Fri). Best wishes Contact a Family Parent adviser