Do you have experience of living with perianal fistula?

A new therapy, called darvadstrocel, is being considered to treat complex perianal fistula in adults with non-active/mild Crohn’s Disease that have not responded to conventional (e.g. immunosuppressants/antibiotics) or biological therapies (e.g. inflixamab/adalimumab).

Darvadstrocel involves an injection of stem cells into the fistula under anesthesia. 

The Scottish Medicines Consortium (SMC) is also considering whether to recommend this same therapy in Scotland. 

A number of people living in England and Wales have already shared their experiences to help inform our submission to the National Institute for Health and Care Excellence (NICE) which is considering whether to recommend the therapy for use in England and Wales. 

We aren't aware of patients receiving this therapy in the UK, so we aren't expecting to hear from patients who have used the treatment. Instead, we are asking for your experiences of living with the condition to help inform committee members reviewing the treatment, who will have limited knowledge of this condition and its impact.

If you are currently living in Scotland and are personally affected, please email us with your experiences: 

• What is it like to live with perianal fistula? 
• What you think of current treatments and supporting care available on the NHS? What impact have current treatment(s)/surgery had on the closure of your fistula, disease activity, continence and your quality of life? (please specify the treatment/s you received) 
• What support, if any, you require from others/services on a daily basis to live with your perianal fistula. If you are a carer for someone with this condition, what do you experience when caring? 
• If current treatments (immunosupressants/biologics/supporting care/surgery) have been unsuccessful, what has been the impact on your quality of life? 
• Are there any areas of services or treatments where your needs are unmet? 
• Do you think there are the advantages/disadvantages to the new treatment?