Why not use the weekend to write to your MP?

It's been a busy week for all of us, we can't believe we have almost 2,700 supporters of this petition in just 5 days! 

But we hope while you have a break at the weekend, you may also consider emailing your MP to support this campaign, if you've not already done so.

It couldn’t be easier to find and email for your local MP, making clear how important this issue is to you and asking them to take action on your behalf.

1. Copy and paste our sample letter text found below
2. Click HERE to use your postcode to find your MP!
3. Paste and edit the letter with your details and click send!
4. Email social@tuberous-sclerosis.org with the subject line 'Campaign' to let us know, so we can have a good idea of how strong our campaigning is!

Thank you once again for your support,

Best wishes

Team TSA

#everolimusforepilepsy #nhswrongdecision  #wewontgiveup

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Example letter

<Name of local MP>
House of Commons
London
SW1A 0AA

<date>
Dear <name>

NHS patient access to treatment for epilepsy related to tuberous sclerosis complex

I am writing to you, as my local MP, regarding the urgent need for access on the NHS to a new medicine for epilepsy related to tuberous sclerosis complex (TSC).

TSC, a rare genetic disease, can cause non-cancerous tumours to grow in vital organs, including the brain, heart and lungs. One of the most debilitating manifestations of TSC is epilepsy, which affects eight out of ten people with the disease. More than half of these people will not respond to standard anti-epilepsy treatments.

Although a new treatment option for these patients has recently been licenced across Europe, the NHS has recently chosen not to fund it due to other priorities. This is hugely disappointing. Patients and families are clear that the medicine, everolimus, is life changing. It can significantly reduce the number of seizures and the risk of sudden death, prevent high risk of kidney problems and brain tumours, and improve the physical and mental health of parents and siblings due to improvements in the health of their loved one.

<This is a space for you to briefly write about your own experience of TSC and epilepsy, and of your experience of everolimus if you have had an opportunity to try it or your hope that it may be able to help you in future if you have not.>

NHS England’s decision was not just disappointing but also flawed. This is because in reaching their decision, NHS England ignored evidence provided by patients who received the medicine during clinical trials, and their families.

However, there is an opportunity. NHS England will reconsider their decision later this year. When they do so, it is vital that they fully consider evidence provided by patients and their families, so that they can make a more informed decision that takes account of all available evidence.

I therefore urge you to write to the Chief Executive of NHS England, Simon Stevens, to ask him to make sure this happens.

Yours sincerely,
Name