Dr Shelagh Joss is a Consultant Clinical Geneticist with a longstanding interest in TSC. Having moved to Glasgow 10 years ago, Dr Joss founded the Glasgow NHS TSC Clinic, where she is the Clinic Lead. During the Scottish Get Together 2020, Dr Joss was part of a special Q&A session, answering the community’s questions about the Glasgow NHS TSC Clinic and TSC more generally.

Here, we’ve provided an overview of the Q&A session with Dr Joss, so that those who were unable to make the Scottish Get Together 2020 can benefit from the session.

Can you please tell us a bit more about the Glasgow TSC Clinic setup?

“I coordinate the clinic and, as TSC is a multi-system disorder, the clinic has good links with different specialists in a range of areas. We can usually identify and reach out to the best local specialist to deal with specific issues.

Those who work closely in or with the clinic include Dr Judith McKie (Consultant Child & Adolescent and Intellectual Disabilities Psychiatrist) who often signposts to local services. Renal physicians Dr Ihab Shaheen (Paediatric) and Dr Rajan Patel (Adult) and I hold MDT meetings where we review renal imaging and recommend when and what type of scan should be done next. We also see patients in clinic whom we have identified who might benefit from mTOR inhibitors or more detailed screening for renal complications. We also have good connections with urologists, neurologists, dermatologists, lung specialists and cardiologists.”

Does the Glasgow TSC Clinic see both children and adults living with TSC?

“Yes, we offer a child clinic and also an adult clinic. There’s often some overlap between the two for young adults, who may still be attending the child clinic or have only recently began to attend the adult clinic.”

How does someone typically get a referral to the Glasgow TSC Clinic?

“We see people on request from all across Scotland and we get new referrals all the time, particularly from neurologists when children are moving from paediatric to adult services, or from learning disability specialists, or dermatologists if a skin symptom has emerged.”

How often do clinics take place, and is it only face-to-face?

“Sometimes, we see people as a one-off, to decide with them a plan so that their TSC can be managed. In other cases, we see people at more regular intervals to monitor particular aspects of their TSC care and management.

We do face-to-face clinics and they typically take place around twice per year for adults and twice per year for children. However, face-to-face appointments can be an upheaval for those living outside of Glasgow. Often, people will see specialists that are local to them – such as an epilepsy nurse or learning disability specialist – so the clinic’s role is more to ensure that other issues aren’t overlooked.  For example, someone’s main symptoms might be epilepsy, but the clinic will catch up with renal clinicians regularly to check that the person is having regular kidney screening so that nothing is missed.”

When will the Glasgow TSC Clinic be back to normal following coronavirus?

“Most things have been put on hold due to coronavirus, except for emergencies and urgent cases. We’re trying to get back up and running to see people face-to-face, and we are putting our recovery plans into place.

We’re waiting for approval to start holding clinics in the genetics clinic within the next month or so. After this, we are hoping to run an adult TSC clinic in October and a paediatric TSC clinic in November.”

In the long-run, how might the impact of coronavirus change ways of working at the Glasgow TSC Clinic?

“With coronavirus, we are getting more used to telephone and video consultations, particularly for people who are living in more far-flung areas of the country. We’re conscious that Glasgow is a long way for many people to travel to attend a clinic, so it is likely that we will carry out more consultations in this way in the future due to geographic reasons, if we don’t need to do any face-to-face tests, take samples or carry out scans.”

Some people who are taking everolimus or sirolimus in liquid or tablet form were asked to temporarily pause their treatment as a result of covid-19. Do you have any updates on when treatment may restart, from the Glasgow TSC Clinic?

“I’ve just spoken to my renal colleagues about the potential for patients to restart treatment. With shielding pausing from 1 August in Scotland, we are now contacting adults who would like to resume taking mTOR inhibitors and take it from there.

Similarly, we will be contacting paediatric patients with a view to them restarting treatments over August. We’re being guided by the Scottish Government with regard to shielding, and when shielding arrangements are being relaxed it seems like a sensible time to restart treatment.”

Do you have any additional advice about shielding, with shielding now paused in Scotland?

“There is a small group of people who are considered to be at a very high risk from coronavirus, and most people with TSC don’t fall into this group. My understanding is that now even this group are being advised that, as long as they are being very strict about following advice on avoiding crowded areas and busy times, observing social distancing and hand hygiene, and using face masks, then with sensible precautions they can relax their shielding a little”

Do you have any advice on face coverings and coronavirus?

“Decisions on face coverings need to be made by the individual with TSC and their families. Some individuals and adults may find it difficult to wear face coverings for a number of reasons

People will need to make their own decisions about whether it is practical to wear the mask or not, and if you are not wearing the mask then try to be more conscious of avoiding crowded or indoor situations.”