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:
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.