"Left to struggle"

Our daughter is suffering from significant tics impacting her every day. She is affected by her tics every single hour of every single day. This has been going on for several years and is getting worse. The tics affect her schooling, her life at home, her friendships and her wider opportunities (travel, groups and classes, etc).

Our daughter has not ever been seen by anyone other than her GP, regarding her tics or other developmental issues. She has been and is being seen by medical paediatrics and physiotherapy for several medical issues and we are very grateful for this. None of them however deal with tics and tourette's.

We, as parents, assume this is tourette's. However, we are not the experts and we need our daughter to be assessed by someone who is.

Our daughter has now been referred twice to Fife community paediatrics, once through school and once through her GP. Both times her referral has been rejected. The letters we received were not helpful as they signposted us to services which are not relevant to her. We have detailed why this is the case and requested clarification. This has been completely ignored so far. We do not think these questions are unreasonable, but apparently nobody feels the need to take responsibility.

Our daughter's GP is very supportive,  but also does not know where to refer now or how to help, the same goes for her school.

Below is a list of service suggested but not appropriate:

- Health Visitor : our daughter is too old.

- Primary Care Psychology: Is this the same as CAMHs? If yes; CAMHs have already rejected a referral for her (tics and tourette's are not  mental health conditions and as of yet our daughter's mental health is thankfully not significantly affected by the tics). If no, please advise who that is and how our GP can refer to them. 

- Sleep Clinic: We have not mentioned any sleep problems. 

- Speech and Language therapy: While our daughter does have issues with fluency, we have discussed this twice with the parental SLT helpline and they think this might be tic related and therefore cannot help.

- Occupational Therapy: Looking at their information online, we fail to see how they help with tics and assess for tourette's. Please advise if that is incorrect.

- ND pathway: yes, this is also in progress and school are amazing and fully supportive. ND services in Fife do not deal with tourette's though.

Therefore, in our understanding, none of the services mentioned can actually provide any help or would be suitable to assess for tourette's. No information for tics or tourette's is available through the parent advice helpline.

So where do we go?  We assume our daughter's GP sent all information, including letters from school, out of school activity providers and ourselves, and it should be clear that we are dealing with many, some significant issues.

Other issues we wish to raise:

- Who assesses for tourette's syndrome? It used to be Community Paediatrics; who is now responsible?

- Tic leaflet: We have been provided with this several times bus unfortunately none of this is new to us. We have a son diagnosed with tourette's already and the advice on the leaflet does not provide help with tics that affect the child massively every single day and cannot be ignored. The leaflet clearly states that in cases like our daughter's, seeing a specialist might be helpful. Please name such a specialist she could access.

 If Community paediatrics cannot help, please do tell us who else will see her.