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It is important that all members know that girls with TS are entitled to Growth Hormone treatment. On behalf of all girls with TS the TSSS fought hard to get choice of device for our girls. NICE agreed with us and offered choice in their Technology Appraisal. 

I understand that some families are experiencing delays or changes to your treatment. If this is the case, please contact Arlene Smyth at This email address is being protected from spambots. You need JavaScript enabled to view it. and I will do my best to help you. If you are being ask to switch to a device because of cost or any other reason, be sure you know all the facts and establish who is accepting clinical responsibility for such a change to your child’s care.  For your information NICE carried out a full technology appraisal and issued Guidance which is mandatory. It is available here, https://www.nice.org.uk/guidance/ta188

If you feel that the NICE Guidance is not being adhered to, you can follow the link below it tells you how to make a complaint https://www.nice.org.uk/advice/pip1

You may be asked to change to a Bio Similar Growth Hormone as it is cheaper. However, this change should only happen in consultation with your specialist and then only if it is something that you are happy to do. As we all know any change for a child with TS is very difficult to manage and should be considered carefully. A guide to Bio Similar Drugs is available by following link below. 

https://www.england.nhs.uk/wp-content/uploads/2015/09/biosimilar-guide.pdf

Nice was supposed to avoid a post code lottery, sadly with the pressure on the NHS to cut costs this is no longer the case.  We are calling for open and honest conversations with families. Automatic switching should not be carried out as stated in the NHS England Guidance above.  It is important that you know your rights and how to complain if you are not happy with any suggested change or the limiting of choice. 

The TSSS supports the BSPED position statement:

British Society Paediatric Endocrinology Diabetes [BSPED]
Position Statement on Choice of Delivery Device for Growth Hormone Prescribing

The BSPED recommends the following:

  • In accordance with NICE guidance (see below), the BSPED recommends that "the choice of product is made on an individual basis and after informed discussion between the responsible clinician and the patient and/or their carer about the advantages and disadvantages of the products available, taking into consideration therapeutic need and the likelihood of adherence to treatment."
  • The NICE guidance on choice of product should run throughout an individual’s duration of treatment with growth hormone.
  • Automatic substitution (dispensing one brand instead of another equivalent or interchangeable brand) by professionals other than the prescribing team, without consultation with the hospital consultant managing the growth disorder, is not appropriate.

NICE: National Institute for Health and Care Excellence Technology appraisal guidance, 26 May 2010

Guidance 1.2

"Treatment with somatropin should always be initiated and monitored by a paediatrician with specialist expertise in managing growth hormone disorders in children. The choice of product should be made on an individual basis after informed discussion between the responsible clinician and the patient and/or their carer about the advantages and disadvantages of the products available, taking into consideration therapeutic need and the likelihood of adherence to treatment. If, after that discussion, more than one product is suitable, the least costly product should be chosen."

http://www.bsped.org.uk/clinical/clinical_position.aspx #CodGHP

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