Emma Murphy and Janet Williams are on a mission. It’s a mission that has seen them making a real difference. They have successfully campaigned for changes that will protect the future health of thousands of babies. And they have made influential friends in high places. Here’s their story and how RfM is supporting them with their quest.
Well before they met and set up in business together, Emma and Janet already had a shared connection – they both have children that have been affected by Fetal Anti Convulsant Syndrome (FACS). FACS is caused when a mother takes one of a number of anti-convulsant drugs during pregnancy to treat her condition. It can affect a child to varying degrees ranging from dysmorphic facial features, cognitive impairments, spina bifida, cleft lip and palate and autistic spectrum conditions.
A tragic cause and effect
In recent years, the link between a number of epilepsy drugs and disabilities in children has finally been acknowledged by the pharmaceutical companies that make them. For decades the link was denied. But these drugs, due to their effectiveness in managing epilepsy, are still being prescribed to pregnant mothers.
The parallels between the Thalidomide disaster of the 1960s – still affecting the lives of victims today – can’t be ignored.
The FACS Association (FACSA), one of two entities set up by Emma and Janet in 2012, is a not-for-profit support group providing information and help to children and their families diagnosed with FACS. The Independent Fetal Anti Convulsant Trust (In-FACT) was also established with the purpose to give relief and assistance to those whose disabilities were caused by FAC Syndrome.
Official campaign group
In-FACT is recognised by Government as the Official National Campaign Group for FACS. Their efforts to raise awareness of the condition and effect real change in the way these drugs are prescribed have led Emma and Janet all the way to Parliament. Their cause has been supported by Norman Lamb, former Minister for Care & Support, who has helped form an All Party Parliamentary Group to lobby for changes in legislation.
And their passion and hard work is paying off.
In spring 2016 new warnings and guidance on prescribing the drug sodium valproate to girls and women with epilepsy were issued by the MHRA (Medicines and Healthcare Products Regulatory Agency). Information booklets to further improve the level of information given to GPs and health professionals will also be produced.
The next major step is to secure a financial Care Plan from the government for those children that have been affected – many of whom are now grown up. The charitable trust will be responsible for protecting and distributing that money.
A constitutional error
Emma and Janet appointed Alan Meikle of RfM Fylde based in Pilling as he had been their accountant for their previous charity a number of years before. But when it came time to complete the first year’s accounts, Alan soon discovered a problem.
“I was not involved in setting up and registering the two entities. It was when it came time to do the first year’s accounts that I discovered that the Memorandum of Articles was not set up correctly.
“In order for In-FACT to be able to register as a charitable trust we had to completely re-do the constitution of the company. There was quite a lot of work involved – plenty of paperwork – but now that it’s all correct, the charity is in a position to legally operate as a trust.”
Emma and Janet have found the support they get from Alan is invaluable.
“Alan has been fantastic at every step. The way we have had to set up the charities is complex – similar in principle to the Thalidomide Trust – but Alan explained everything really clearly,” said Janet. “We can’t thank him enough for all his support.”
You can learn more about FACSA/In-FACT at facsa.org.uk