Denise and David’s Story
Eve died aged 21 in 2005 whilst studying at Staffordshire University. She was the youngest of our two daughters. We knew nothing of SUDEP.
We first met Epilepsy Bereaved on 15th October 2005 in Liverpool, it would have been Eve’s birthday. The charities initial EB, our daughter Eve Brown, we could be nowhere else.
Not really knowing what to expect we sat, listened, I cried for most of the weekend, but left our first meeting different people, we were not so alone. We felt able to relax and for a few hours be ourselves. It was at this meeting we heard people talking about Epilepsy Nurses, and how a guy from Wales had with Epilepsy Bereaved’s help campaigned for such a nurse – we were novices – we knew nothing of the PCT – But we realise now the seeds had been sown we were at the start of a campaign, which would bring lots of emotions into our life, but we realise every single, set back, disappointment, heartache, frustration would be worth it.
We live in rural Norfolk, our local hospital is the James Paget University Hospital, Great Yarmouth which had no ESN nurses on hand to help support people with the condition. Our closest ESN is Norwich 23 miles away, when Eve’s Epilepsy started we had no nurse to help, at times it was impossible to get help. We had an appointment every three months to see a consultant, but when she went into seizure that was no help at all, in desperation we paid for Eve to see the consultant at his home, privately as we were so worried about her.
Luckily when she went to University in Staffordshire she had the help of a Sapphire Nurse, it was a godsend, I called the Nurse many times for advice, she always managed to help. We begun to ask the question why should the people of Great Yarmouth not have a nurse? To help prevent another loss of life, it was too late for our family but not so for others. EB helped us straight away, how do we start?, who should we talk to? Asking lots of questions at EB meetings made us realise this was our next step. We urgently needed a ESN – to prevent another death and to promote the dangers of the condition, to give it the respect it deserves.
We visited our PCT and were told nobody could speak to us, and that we had to telephone to make an appointment, eventually we met with a lady from the PCT who seemed to listen and promised to be in touch – nothing. The trail went dead, I tried to contact her but was told the PCT’s were merging and we would be contacted in the following few months – nothing.
I found out the date of the next PCT open meeting, and asked how I could get to meet somebody from the PCT to discuss Epilepsy, red faces all around, everybody suddenly became engrossed with their paperwork, as the PCT had just been saying how open they were to the public, accountable, a lady from the PCT met me after the meeting, promised action – we talked about the NICE guidelines – she promised to be in touch, then guess what nothing! In fact she did me a favour as I became more determined than ever.
We then decided to write to two consultants at our local hospital caring for people with epilepsy. Straight away we had a response from Dr Nirmal, who we met with straight away, this was the breakthrough. Together we put together a business plan and arranged a meeting with our PCT sending out 11 invitations. We made packs with all the savings to be made by employing a nurse; nice guidelines; our story and what had happened to Eve and a business case We eagerly awaited for at least a few members of the PCT to arrive, nobody came, but luckily a lady from Commissioning, was asked by a member of the PCT to attend we told her what a difference such a nurse would make she took all the information away – we waited.
We seized any chance to use the media to gain attention to our campaign; speaking to newspapers, local radio, and asking friends and family to send in the EB postcards to gain attention. Our local MP listened and seemed to understand the importance of an ESN – on our behalf wrote many letters explaining the importance of having such a nurse locally – and to this day is helping via parliament to improve care for people with with epilepsy locally and nationally.
Keep Going! Be persistent but not antagonistic. It’s important to keep a diary of events and involve the media and local community. It’s a long road but worthwhile- you are not alone !
From the outset EB has been the lead, whether it is advice on the way the NHS works, checking letters, knowing the next step. Each stage has been completed with their help, always knowing the best way to get things done.
The highs of the campaign were getting support from the local community and media interest; meeting Julie Yaxley and Dr Nirmal. Being asked to be on the interview panel was a high point and asking a question about SUDEP to each interview candidate.
ITS ALL ABOUT EVE.
This journey has been a lasting tribute to Eve. Our experience is enabling us to help others; to reduce risk.
The future?
We have taken part in one of three epilepsy pathway meetings with representatives from hospitals all over the county. They are looking at the way forward and NICE guidelines. It is an ideal chance to speak to professionals on a one to one basis and discuss the problems that constantly happen to children with epilepsy, from a parental view. It seems a worthwhile group.
Keeping in touch and helping Helen in any way we can – and, maybe a drop in for parents and their children in the future. We have done some fundraising for EB maybe more in the future?
Who knows? We are disappointed that so far we do not have a ESN for adults – but we will have to see what the future holds.
