TSA campaign to make sure everolimus for TSC-related epilepsy is funded in England

In March 2018 NHS England recognised that there is sufficient evidence to commission everolimus for TSC-related epilepsy, which could benefit up to 1,300 people living with TSC. However, in July NHS England announced that it had decided not to fund this treatment after considering other relative priorities and the budget available for specialised commissioning in 2018/19. 

The TSA believes this decision is flawed because NHS England did not fully consider the evidence provided by patients and their families.  We urge NHS England to listen to the evidence and fund everolimus for TSC-related epilepsy in future.

Thank you to everyone who has been standing by waiting to support our campaign to make sure TSC related epilepsy is funded in England.

Now we need as many people as possible to….

1.  Email or Write a letter to your MP


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 HERE
2. Click HERE to use your postcode to find your MP!
3. Paste and edit the letter with your details and click send!

If you prefer to send a letter in the post to your MP it’s just as simple.
1. You can either open the example letter HERE or copy and paste our sample letter text HERE.
2. Add your details.
3. Then all you need is your MP’s name and constituency address which you can find HERE by entering your postcode.

Please do ask as many people as you can to use their ‘right to write’ by sharing this with all your family, friends and colleagues!
And please let us know that you’ve emailed or written to your MP so we can have a good idea of how strong our campaigning is. Please do this by emailing social@tuberous-sclerosis.org with the subject line CAMPAIGN.

2. Talk about the campaign on Facebook or Twitter    

If you use social media, click HERE for easy-to-use graphics that you can share online or use to tweet your MP HERE. Please use the hashtags #everolimusforepilepsy #nhswrongdecision and #wewontgiveup.

3. Send a press release to your local paper

If you’re happy to raise awareness about why this issue matters so much, get in touch with the TSA’s Comms Officer Sarah Roberts at sarah.roberts@tuberous-sclerosis.org and she will work with you to develop a press release to go to your local news paper/radio/TV station.

4. Sign our petition

Click HERE to sign, then ask your Mum and Dad, brothers and sisters, grannies and grandads, aunts and uncles, cousins, friends, neighbours and colleagues to sign too and share it with all their friends and colleagues etc. Let’s try to get as many signatures as we can.

Listen to Philippa Ward talk about the difference that everolimus has made for her son Thomas and his family.

You can read the TSA’s briefing on TSC-related epilepsy and everolimus HERE

NHS England will reconsider its decision not to fund everolimus for TSC-related epilepsy in November 2018, when planning its budget for 2019/20. 

The louder the voice of patients and families, the more likely it is that we can make NHS England think again. 

Thank you for your support.


<Name of local MP>
House of Commons


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,