Have you been diagnosed with a brain tumour? Order your free information pack.

Clinical Genomics Service Specification Consultation

NHS England have published a consultation seeking views on proposed changes to the Clinical Genomics Service Specification. The service specification outlines standards for clinical genomic services in England.

Clinical genomics (previously called clinical genetics) are services where doctors (typically clinical geneticists) and genetic counsellors work with other health professionals to better understand the genetic profile of someone’s disease or cancer, or diagnose genetic conditions.

Reading an individual’s genes, also known as their genome, provides a rich source of data about their cancer or disease. The benefits include the identification of specific genes and their key roles in susceptibility, response to treatment, and prognosis.

This new service specification is a development of the current service specification, which was published in 2013.

As part of the development of the new service specification, NHS England are asking for people to share their views and experiences of clinical genomics by completing this survey. This consultation closes on 16 October 2022.

Below is some guidance on how you can respond to the survey and make sure the experiences of those affected by brain tumours are central to the resulting Clinical Genomics Service Specification.

Anyone can respond to the consultation, but it is most relevant for those who’ve received treatment for cancer in England, or their family and friends. The resulting service specification will only cover England, but people living in Scotland, Wales, Northern Ireland, and overseas can respond if they wish to.

It is important for NHS England to hear the experiences of brain tumour patients as the more times they hear about these experiences, the more likely they are to listen.

It may take about 20-30 minutes to respond in total, but your response is automatically saved each time you click on ‘Save and come back later’ – so you can leave and come back to it at another time by providing your email address and clicking on the unique link in your email.

There are 5 questions about your experiences of clinical genomics, with some additional in depth questions at the end about the service specification. Some questions just have a tick box, while others allow you to leave a comment.

This consultation closes on 16 October 2022.

Guide to responding

While you don’t have to respond to all of the questions, it will be helpful if you are able to. We realise it is a long survey so if you aren’t able to answer all the questions there are five questions directly related to your or your loved one’s experience of treatment. These are 5, 6, 7, 8 and 9.

Please share as much or as little about your own personal experience in your answers as you feel comfortable with.

When you submit your response, you will be sent a receipt and a link to a PDF copy of your response. If you would like, you can copy this and send it over to us at policy@thebraintumourcharity.org.

Use your experience

Use your personal experiences with brain tumours to help shape the work being done by The Brain Tumour Charity.

If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
Support and Information Services
0808 800 0004 Free from landlines and mobiles
Phone lines open Mon-Fri, 09:00-17:00

Join our voices for change

By campaigning with The Brain Tumour Charity, you can help ensure the issues which affect the brain tumour community remain a political priority.