In May 2011 I asked SANDS to set aside the funds we were raising for them for the purpose of preventative research.  We felt that following the miscarriage of Thomas that whereas bereavement support networks are an important part of the work that SANDS delivers, in the longer-run it is only through research into the causes of miscarriage that the future likelihood of loss and associated trauma for families can be addressed.

In September I asked how the £7,300 that ultimately was the total would be used.  I got the following reply:

To: Stephen Wright
From: J.S. – SANDS Research Team
Date: 6 October 2011

Thank you so much and congratulations on your astonishing effort in completing your tube lines project. It’s a tremendous achievement, both the physical and mental challenge and in what you’ve done for awareness raising and in raising such a significant sum of money.

My apologies for not replying earlier to your email. As it happens we are in transit in our process for distributing research funds and I’d wanted to be able to be as clear as possible in describing how the money would be used. However I can give you an account of our funding to date and how we are planning to fund research going forward.

As you know we have a Research Fund into which donations such as yours go. Our priority is to fund research that will prevent stillbirths and neonatal deaths. Because the causes of deaths are varied and complex the possible areas of potential research span a wide range of specialist areas, including the underlying mechanisms that lead to deaths, maternal and fetal disorders, methods for predicting high risk pregnancies, optimising the delivery of antenatal care and improving investigations after a baby’s death.

We have funded a number of research projects in the last 2 years:

• A questionnaire study of the attitudes of obstetricians, midwives, perinatal pathologists to post-mortem investigation following stillbirth. The study has been completed and has led to the development of a standardized perinatal post-mortem form and information leaflet with the support of a wide range of stake-holders including the Department of Health and the Human Tissue Authority.
• An investigation in to placental structure in cases of stillbirth. The analysis of 150 placental samples will be completed by the end of 2011.
• An investigation of the risks to and treatment of pregnant women with Obstetric Cholestasis, a liver disorder which occurs in 1 in 200 pregnancies and can be fatal for the baby. The study is analysing data on all OC pregnancies in the UK in a one year period, and will make recommendations which should lead to improvement in antenatal practice. Completion 2013.
• An investigation of a particular heart defect as a possible cause of unexplained stillbirth using post-mortem genetic testing. The study will be completed in January 2013 following recruitment of a total of 100 stillbirth cases.

Our aim is to ensure the research we fund is of the highest quality, and most likely to have an impact on mortality. To make sure of that it’s important to have a funding process whereby potential projects can be properly reviewed by specialists in the field who can advise on the quality of the research design and the overall effectiveness of the study. This is the ‘peer review‘ approach adopted by most research funding bodies. We have ‘piggy backed’ in the past on the grant funding process of another well established research charity called Wellbeing of Women, using their Research Advisory Committee to select quality stillbirth research projects. However as we are committed to growing our research fund, we’re now formalising a grant giving process within Sands, and planning to recruit our own research advisory group which is expert in our particular area of interest. As part of that process we are establishing a Research Strategy with clear research priorities. When all this is completed the details will all go on our website and into publicity material. I quite agree that it’s critical to keep fundraisers well informed about what the aims of the Research Fund are and what happens to their donation, and I hope this clearer process will contribute to that.

Because this is currently being decided and set up I can’t give you a final statement about how the process will work, but what we aim to have in place in 2012 is, in brief, an annual call for research funding applications; these will be reviewed by independent experts, and then finally considered by an expert advisory committee. Applications which pass an accepted standard of quality will then be considered by our trustees who will decide which research best fits the strategic priorities of Sands. We aim to fund around £150K per year; more if we can raise more funds.

To give you an idea of what that can achieve, the research projects we’ve funded to date have cost between £10K and £150K.

Our research priorities are being guided by the priorities laid out in the recent Lancet Stillbirth Series which carried out a systematic analysis; by the Clinical Study Group for Stillbirth , which is part of the Royal College of Obs and Gynae, and by the views of Sands members represented by the Trustees. Applications to the Fund will be open to any relevant research projects –all will be for preventative research. By this process it won’t be possible to guarantee that funding will go into one specific area or another, as the selection will depend on what applications are received, and which are of a high enough quality standard. However it is the best way to ensure our funding process is transparent and fair, and that we only fund good quality research.

Apologies for this is rather long reply. Please feel free to get in touch if you’d like more information. Very many thanks again for all you’ve done. All donations are valuable, and £7,300 is a really significant amount. I do hope you feel a very justified sense of achievement.

I do feel that the mechanism being put into place will help to ensure that funds earmarked for research will be suitably allocated to match priorities.  I appreciate that the £7,300 cannot be hypothecated (i.e. allocated to a specific piece of identifiable research), so essentially it is now in the mix with the other revenue that SANDS has dedicated towards this part of their work.

It was encouraging also to note in some closing remarks as follows about raising awareness:

Please do use the information. We’re all for informing people as well as possible. I hope your many supporters will be happy to know that their donations can really make a difference.

Without doubt your contribution is extremely worthwhile. We’re passionate about pushing preventative research forward, but without such support we couldn’t do any of this work.

SANDS research page on their website: http://www.uk-sands.org/Research.html