BE INVOLVED
How to Influence a Sufferers Path through the NHS 

NICE the National Institute for Health & Care Excellence published on the 18th July 2018 a Draft Guideline called Renal & Ureteric Stones: Assessment & Management.
Beat Kidney Stones is a NICE Stakeholder and in that capacity Beat Kidney Stones commented on this Draft Guideline directly to NICE. 
NICE expects it's Stakeholders to pass on views and experiences and make informed comments.
The volunteers in the Charity have experience of stones and the many journeys sufferers take in the NHS but the more comments the Charity has from any sufferer, friend or family member of a sufferer then the better informed the Charity will be.
Please tell as many sufferers as possible about the NICE Draft Guideline and that this Charity is always interested in a sufferers kidney stone experiences. 
Beat Kidney Stones did comment to NICE on the Draft Guideline before the closing date of 29-8-18. 
The Charity's comments have been assessed by NICE and the Guideline was published on the 8-1-19 for all to read.
The Guideline was requested by the NHS and will be used by the NHS to improve treatments for sufferers. 
NICE - Renal and ureteric stones Quality Standard (qs 195) was published on the 29-7-20
 
Beat Kidney Stones is a NICE Registered Stakeholder and was invited to contribute to the following stages in developing this quality standard:

Suggesting areas for quality improvement.  

At the start of development, a topic overview was produced by the NICE team which described key elements of the quality standard, such as the population and condition or services to be covered, and listed the key source guidance that was used to underpin the quality statements. 
That document was published on the NICE website for a two week engagement exercise during which Beat Kidney Stones was asked for written submissions identifying key areas for quality improvement, highlighting any national or routine indicators and performance measures not listed in the overview and providing examples of published information on current practice (such as, reports of variation in care or service provision, evaluations of compliance with source guidance, or patient, carer or service user experience) to support the identified areas for quality improvement. Submissions were then presented to the Quality Standards Advisory Committee (QSAC) to help the committee to prioritize the areas of quality improvement for which quality statements and measures should be developed.  

Commenting on the draft quality standard. 

 After the quality standard was drafted, it was published on the NICE website for a consultation period during which Beat Kidney Stones was invited to comment on the document. General feedback and comments on individual quality statements are accepted but Beat Kidney Stones was invited to respond to specific questions such as which quality statements are most important and why, whether there are important areas of care or service provision that are not included and if the proposed measures are appropriate. Those comments were considered by the QSAC when refining the quality standard prior to publication.

This Quality Standard can be found at  https:/www.nice.org.uk/guidance/qs195 

Volunteers

The intention of Beat Kidney Stones is to operate by using Volunteers whenever possible. This decision was taken to keep the costs of running this Charity as low as possible. 

If you wish to volunteer your time and experiences to Beat Kidney Stones then please contact Peter at Peter@beatkidneystones.co.uk

Do you wish to raise awareness of what Sufferers experience? 

Sufferers have found that when they show friends and work colleagues a stone they have passed, some of those friends and colleagues become interested and finally begin to understand what all sufferers have to experience. It will also help you and other sufferers if one of your colleagues works in a HR department.
By this simple act you are raising awareness for yourself and many thousands of other sufferers. 
  
To help keep your stone intact and from getting lost we suggest fixing your stone to a piece of paper with see through sticky tape and adding the date of when you passed the stone to the paper.


 
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