Carer information and support
Caring for someone with TSC
Often unpaid and overworked, the tireless work of carers in the TSC community should never be ignored or underestimated.
If you are a carer for someone living with TSC, or know someone who is, it is important to make sure that you also get the information and support that you deserve.
There are many routes to accessing carer support and by doing so you can continue to ensure that those around you get the help that they need.
Carer support during difficult times
The TSA hosted the virtual session ‘TSC carers support and covid-19’ during the coronavirus outbreak, featuring insights and participation from Carers UK.
Although the session focuses on covid-19, the advice and discussions in the session would be useful during any time of particular strain for carers in the TSC community.
Respite care for carers
At a previous virtual TSC event, we welcomed Respite UK to tell us all about their open grants and offers to people in need of respite, such as voluntary carers.
Speak to Respite UK about the respite packages that they can offer you. You could combine Respite UK’s packages with the TSA Support Fund, to allow your respite to stretch even further.
The TSA Support Line
The TSA Support Line is operated by a small team of advisers who understand the impact that caring for someone with TSC can have on entire families. You can speak to our advisers over the phone, email or webchat about a wide range of care topics, including accessing benefits for carers, identifying respite care and receiving emotional support. You could even give us a ring just for a chat.
Contact details for our support team can be found here.
Carer support resources
- Epilepsy Action has a special section focused on caring for someone living with epilepsy and a learning disability
- Rethink Mental Illness has a tailored Carers Hub focused on supporting carers who look after people with mental health illness. The website includes a special ‘Caring for yourself’ guide for carers
- Carers Trust offers support for all carer-related issues, with an online carer forum and search function to find local and regional carer support organisations throughout the UK
- Carers UK provides support for carers and information on all aspects of caring, including benefits, emotional support, equipment, the wellbeing of carers and carers rights. Carers UK also run a support line
- Cerebra is dedicated to supporting children living with brain conditions, like TSC. The charity includes guides and information about being a carer of a child with a brain condition, including a guide to pain, what to expect at assessments and advice on looking after yourself
Make a one off or regular donation
£10 Can allow us to send a welcome pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.
£25 Can help us develop materials that are included in our support services, flagship events or campaigns.
£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.
To provide help for today and a cure for tomorrow