This post was going to cover my 20 week scan and foetal echo, but due to a rotten run again with the sickness and subsequently epilepsy (part of which resulted in burns to my hands) I hadn’t got round to putting it together. Instead today I managed to sit through the #epilepsydebate15 in the House of Commons. I tried to keep up and take notes so I could put this forward, and I’m hoping I hit the key points, but due to how rough I feel I apologise if I miss something! Also some of what I have written has been lifted from the debate itself. I have to thank Chris and sky + for their help here, Chris in repeating things for me and sky for allowing me to pause and rewind!
So much was covered in the debate today, and I could go on for pages about it all, but in the interest of the blog I will cover a bit of a general overview and then stick to the fact that epilepsy and pregnancy was covered!!! That said, just to make you aware overall the topics covered were: lack of care, awareness, research, stigma and discrimination. If you want to see it in full I believe BBC iPlayer has the full debate.
My first complaint is that I contacted both my own MP and the one for my Mums area, which also happens to be the area the hospital I’m treated in is. Mums MP answered and just said they would write to me, and my own MP? Well after two emails I never had a reply, and there is no surprise in saying neither of them were present today. In fact the attendance was shocking, I wonder how many would have turned up if it was about their pay?!
“Epilepsy is not trendy, Epilepsy is not fashionable”: Laura Sandys MP
Boy did she hit the nail on the head with that one statement! Epilepsy is a life-threatening neurological condition that can affect anybody at any age without warning. There are 40 different types of epilepsy and at least 40 different types of seizure, and 87 people are diagnosed with the condition every day. Epilepsy now accounts for more deaths than cervical cancer and is among the top 10 causes of amenable deaths. Yet it remains very much in the dark. In the words of one MP today “ We should be doing so much better....giving people with epilepsy a lifeline...investing in the right areas of research.”
“At this moment, the picture is bleak”: Teresa Pearce MP
Stigma surrounding epilepsy is almost unique, and this is the first problem that people with epilepsy face. Then add problems such as discrimination, lack of care and it all begins to mount up. Despite 1 in 103 people in the UK living with epilepsy it is too long forgotten when it comes to funding, and it is funding that is so badly needed. I’m going to touch on a subject that I am passionate about and it is the epilepsy nurses. As Norman Lamb – Minister for Health said today “Nurses are key”. I could not agree more. My old nurse is the reason that I was taken off Sodium Valporate years ago and made aware of the risks during pregnancy, she was only ever at the end of a phone and always happy to answer any questions, however there is a huge gap in care. In one constituency and one hospital mentioned today the epilepsy nurse there is responsible for over 1000 patients. In most hospitals it is 1 nurse for every 300 patients. That is not acceptable, and I cannot stress how invaluable they are!
“Urgent need to improve support and advice to women of a child baring age”: Teresa Pearce MP
139,000 women of child baring age in the UK have epilepsy and approximately 2400 babies a year are born to mothers with epilepsy. Up stands Teresa Pearce MP and I am all ears, I think I was almost holding my breath to see the points that she would cover, and she did both herself and those she represented justice.
There is an increased risk of foetal and maternal death in women with epilepsy, and four women a year die during pregnancy, horrible statistic, but there is no shying away from this. The saddest thing? These could possibly be prevented with the right care, support and advice. A recent report entitled “Saving Mothers’ Lives” highlighted the failure to reduce maternal deaths from epilepsy over the past two years. If women with epilepsy were provided with support and health care tailored to their specific condition, it is likely that the number of maternal deaths would be reduced. The science is available to ensure that women with epilepsy can have successful pregnancies with the right support, but that must be universally available to all women with epilepsy since simple measures can decrease the risks associated with epilepsy in pregnancy.
Teresa Pearce firstly highlighted the issues with pregnancy and the AED’s, looking in particular at the risks associated with Sodium Valporate and the lack of information available, also the risks associated with AED’s and the effects. I could go into detail here, but instead I refer you to the Foetal Anti Convulsant Syndrome Association (www.facsa.org.uk) who have done some amazing work and can explain this in far more depth than I ever could.
So what was covered? Everything I have been saying since I began writing this blog.
1) The importance of an informed choice on medications during pregnancy. The Government must commit to the implementation of NICE guidelines.
2) Provision of care is at best variable and nonexistent at worst.
3) That women are in desperate need of specialised guidance and support from their GPs, but there is no such support at present. GPs should be providing pre-conception counselling and tailored advice, but they do not appear to be taking that responsibility seriously. In 2012, a survey by Epilepsy Action revealed that 26% of women who had been pregnant in the last five years, or were planning to become pregnant, had never received counselling. That puts women and unborn babies at risk. It should be embedded in the care pathway and pregnancies flagged as high risk. GP’s knowledge of the effects of AED’s on pregnancy is patchy in contrast to NICE guidelines.
Women are in the impossible position with very limited information available to them. Do they continue to take the AED’s and run the risk to unborn baby or do they stop the medication and run the risks of any seizure?
One positive that came from today is from The Minister of State, Department of Health (Norman Lamb): “I take this issue extremely seriously. There has been an EU-wide review of the risks involved. The Medicines and Healthcare Products Regulatory Agency issued new guidance in January, and the British National Formulary has also been updated. The Department is considering the introduction of a “red flag” system to notify GPs of the risks posed to women of child-bearing age, and I personally am very keen to introduce such a system. “
My own personal question is this: GP’s are only as good as the information in front of them, is enough research being done to shed light on the risks of AED’s ensuring women have all information available in order to make informed choices?
Read the full debate here:
Epilepsy and Pregnancy Register
It was also discussed whether patients would be willing to give up their data in order to assist research. I am all for this and would give up any data wanted/needed in a heartbeat if it meant future generations would be helped. Yet what other condition/illness/disease do you know of that the onus is put on those who suffer to push for research? But as I say I am a fully signed up member of this and from my first appointment forwarded my details to the epilepsy and pregnancy register to assist research to hopefully improve the treatment for pregnant women in the future. (www.epilepsyandpregnancy.co.uk)
Young Epilepsy Champions Award
To finish on a positive note I found out that I have not only been nominated but also short listed for a Young Epilepsy Champion award. I am so unbelievably touched by this and am very much looking forward to attending City Hall n March 26th (Purple Day) for the awards ceremony!
“Hopefully today we have taken epilepsy out of the shadow of stigma and discrimination and into the spotlight of knowledge, awareness and hope for the future” – Valeire Vaz
My names Faye, mostly known for being a tea addict and keen runner. I'm 31, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.