Funding

Hello @jake2008, 

SDR is not currently routinely funded by the NHS. However some children did receive the procedure through the Commissioning through Evaluation (CtE) programme. In the first phase of the programme 140 children were selected to receive the treatment prior to March 2016. The programme then entered its second phase which is to evaluate the benefits of the procedure had for those children and decide if future NHS funding is justified. We were told to expect an interim report in report in March 2016 but as far as we are aware this has not been published yet. The final evaluation of the scheme is due to be published in the summer of 2017. That report will presumably state if NHS funding will be available or not and if so what clinical circumstances will meet the criteria they have devised. As far as we are aware no SDR operations are now being NHS funded until the final report is published. 

The five centres in the UK able to do SDR in phase one of the programme were:

• Great Ormond Street Hospital for Children
• Leeds General Infirmary
• Nottingham University Hospitals
• Alder Hey Children's NHS Foundation Trust
• The Robert Jones and Agnes Hunt Orthopaedic and District Hospital NHS Trust
• The Portland Hospital for Women and Children

We believe that they are still able to perform the operation but are unable to get NHS funding for it at this time so people are having to find the funds privately. However, we recommend that you talk it over with your Son’s consultant to see if any exceptions to this are possible. 

There is a parent support group relating to SDR in England: http://www.support4sdr.org/sdr-in-the-uk.html and if you're in Wales they have a sister organisation http://www.support4sdrwales.org.uk/ they may be able to advise you about fundraising.

We do regularly speak to parents whose children have had SDR but the majority have self-funded, sometimes with some assistance from charitable funds and others by doing their own fundraising.  http://www.scope.org.uk/Support/Disabled-people/Grants/Fundraising-yourself 

There is another charity called http://www.treeofhope.org.uk/ and it's worth checking with them.

Best wishes

Scope helpline