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How to be referred to an NHS TSC clinic

NHS TSC clinics specialises in care for people living with TSC. It is recommended that you see if you should be referred to one

There are currently 17 NHS TSC clinics across England, Scotland, Wales and Northern Ireland.

The TSC specialist doctors (and nurses) who work at NHS TSC clinics are experienced in looking after people living with TSC, dedicating much of their professional lives in helping people who live with the condition.

Please note: NHS TSC clinics are run by TSC specialist doctors and nurses who volunteer to work at their NHS TSC clinics in addition to their day jobs. Each NHS TSC clinic depends on funding. Each clinic will have a limited number of appointments each month. What you experience at an NHS TSC clinic will vary depending on which clinic you are referred to

What is an NHS TSC clinic?

An NHS TSC clinic is a clinic that specialises in care for people living with TSC. There are currently 17 NHS TSC clinics across England, Scotland Wales and Northern Ireland.

NHS TSC specialist doctors (and nurses) understand just how complicated TSC is and how the condition affects everyone differently. NHS TSC clinics are also aware of the UK clinical guidelines in TSC, which sets out best practice for diagnosing and managing TSC in the UK, ensuring that people living with TSC receive the level of care that they deserve.

On this page, we provide an overview of NHS TSC clinics are, how they might help you and the stops towards getting a referral.

For contact details of all NHS TSC Clinics and to find your nearest clinic, read our Find a local NHS TSC clinic page.

How often should I have an NHS TSC clinic appointment?

It’s recommended you have a check-up with your NHS TSC clinic every 6-12 months. Your TSC specialist doctor might recommend you see them more or less often than this, depending on your own individual needs.

Most NHS TSC clinics take place one or twice each month. Some NHS TSC clinics have long waiting lists, so it’s useful to have a conversation with your TSC specialist doctor about how often you should visit your NHS TSC clinic. If a new symptom occurs, you can call your NHS TSC clinic and ask them for advice on what to do. Most NHS TSC clinic coordinators will try their best to allocate appointments where there are urgent needs, or they can work with your local hospital doctor to decide the best way forward.

You can find more information on the recommended timings for check-ups on different TSC-related issues in the TSA’s summary of the UK clinical guidelines in TSC care (see here).

Where is my nearest NHS TSC clinic?

The TSA has a list of NHS TSC clinics from across the UK. You can find this list here. It contains contact information and the name of the lead TSC specialist doctor at each NHS TSC clinic.

How do I get access to an NHS TSC clinic?

This will depend on your personal situation and whether you have already had an appointment at an NHS TSC clinic in the past. Choose from one of the three options below, based on what most applies to you:

You need to tell your GP or local hospital doctor the name of the NHS TSC clinic that you want to be referred to and the name of one of the TSC specialist doctors working at that NHS TSC clinic. They will write a letter to that NHS TSC clinic, or fill in a referral form online. Self-referral may be an option depending on the clinic that you want to visit.

Contact your NHS TSC clinic and ask for an appointment. Some NHS TSC clinics have long waiting lists, meaning it can be best to give them a call or send them an email as soon as possible.

You will need to be referred to  a  the NHS TSC clinic closest to you by your GP or local hospital doctor  If you want to stay at your previous NHS TSC clinic this may be possible in some circumstances, but you’ll need to talk to them to discuss your individual circumstances.

How do I know which NHS TSC clinic to be referred to?

It is usually best to visit the NHS TSC clinic closest to your home address, unless otherwise instructed by your TSC specialist healthcare team.

Only in special circumstances will you be able to visit a specific NHS TSC clinic through personal choice, with the decision usually being made because of geographical and health support needs

A list of the NHS TSC clinics throughout England, Scotland, Wales and Northern Ireland can be found here.

What happens at NHS TSC clinic appointments?

At some NHS TSC clinics, you will be seen by just one or two TSC specialist doctors.

At others, you will be seen by a team of different TSC specialist doctors and nurses. For example, there might be one doctor who specialises in the kidneys and another doctor who specialises in epilepsy. There might also be a specialist nurse who coordinates clinic appointments and provides care and advice to everyone who is registered with the clinic.

These TSC specialist doctors (and nurses) will ask you about your concerns to do with TSC. They may talk about your most recent scans and what you need to do next. They may ask you about any medicines or other treatments that you are taking.

The TSC specialist doctors will always write your GP and your local hospital doctor, to make sure they update them on your appointment at the NHS TSC clinic.

Advice for attending NHS TSC appointments

It is common for an NHS TSC appointment to be overwhelming and possibly stressful. With TSC impacting on lives in so many different and often unique ways, you may have many questions or discussion points for the professional that you speak with.

If possible, it can be helpful to bring along a family member, friend or carer with you to your NHS TSC clinic appointment. The person who comes with you can help to remember what the TSC specialist doctor or nurse has said and make sure you get any questions and concerns addressed.

If you’re attending on your own, you may want to write down any questions or concerns you want to go through during the appointment beforehand. It is also good practice to write down any information or advice the TSC specialist doctor (or nurse) might give you during the appointment itself. This way, you can make sure you remember as much information as possible.

Remember, if you need any advice before or after your appointment, the TSA’s support team is here for you. Click here to find out more.

My GP doesn’t know much about TSC or NHS TSC clinics. What can I do?

TSC is a rare condition and it is common for your GP or local hospital doctor or nurse to not know a great deal about the condition. It is even possible for them to have never encountered TSC before. When this happens, you may feel isolated, frustrated and helpless.

Always remember that the TSA is here to help you get the care that you deserve. If you find that your GP or local hospital doctor or nurse  is unfamiliar with TSC, you could:

  • Ask your doctor or nurse  to contact the TSA’s support team, where they can talk to one of the TSA’s advisers to learn more about the condition and NHS TSC clinics
  • Print off TSA information leaflets and guides and take them to your appointment with you, to give to your doctor or nurse so they can find out more about TSC. Information could include the TSA’s summary of the UK clinical guidelines into TSC care
  • Go to your appointment with your GP or local hospital doctor or nurse equipped with information about the NHS TSC clinic that you wish to be referred to, including their contact details and the name of a TSC specialist doctor  who works there

I am still unsure about how to be referred to an NHS TSC clinic or have more questions

If you have any more questions, do not hesitate to get in contact with our support team. One of our friendly and knowledgeable specialist advisers will be able to assist you. Click here to find out more.

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