Wednesday, 8 April 2015

The difference between adequate care and exceptional care

So yesterday we saw the reflections midwife at our local hospital and I have to say I left pretty disappointed.  I think the problem is having seen Kim the epilepsy midwife we had just set our expectations too high.

So I guess I need to start by reflecting on what went wrong last time and that can be broken down into four key parts:
  1.  I ended up going into hospital at 9cm dilated – my waters hadn’t broken so there was still the opportunity to put an epidural and after over an hour of trying they finally got it in. I then didn’t deliver for another 12 hours because the epidural mixed with taking clobazam slowed everything down.  When I finally did deliver Riley was dragged out with forceps because we had both become distressed.
  2. Rich was forgotten just as things were getting really stressful – he got told to wait in a side room while I was taken off to theatre – he wasn’t told anything.   He didn’t know what was happening to me, he thought I had died.
  3. After delivering Riley they forgot to administer pain relief and I was in huge amounts of pain and they then did internal examinations on me.  Of the whole labour for me this was the most traumatic part, I had given birth, it had taken over 24 hours but I didn’t get to hold or even see Riley for what seemed to me to be hours, instead I was in immense pain and having people poke and prod me.
  4.  I had to stay in hospital because I was on IV antibiotics and during that time at night when Rich had to leave Riley was placed in the cot with me to feed for hours on end because she wouldn’t stop crying.  The neurology team had dropped my medication levels straight down from 650mg to 450mg overnight (I have since found out I should have been weaned off them) and I hadn’t slept for 3 days – the risk of me having a seizure was high and I was alone in bed with a newborn baby…

So the first thing the reflections midwife did was say she wanted to talk to me on my own – looking back I should have refused from the beginning but she said that was how things worked there and I didn’t want to set off on the wrong foot.

We talked through what happened last time and I kept saying, it was hard for Rich too, highlighting that he had been left not knowing what was going on (similar to what was happening again right now!) and she kept saying she’d talk to him after we’d run through everything.  I also kept saying that I couldn’t really remember the details because of the clobazam making everything a bit muddled up and I definitely couldn’t remember time scales and it would probably be best to check with Rich about the details. 

Towards the end I was close to tears, when I mentioned how hard the first few months were and whereas with Kim it felt OK to cry – this time I felt like I just needed to pull myself together and it was at that point I knew this woman was a means to getting things down in writing so it could be different this time, I wasn’t going to get anything deeper out of it.

When I was finally able to go and get Rich he was understandably upset and there wasn’t really much more to say.  The thing is it’s not that she did anything wrong – the whole way through she agreed that everything that happened shouldn’t have happened and things needed to be different this time around and we agreed we’d write a clear care plan which at the end of the day from a practical point of view is all I needed it’s just we had hoped for a little more.

As my blogs title says I guess it’s just the difference between acceptable healthcare and exceptional healthcare.  In London they’d always included Rich in my care – always looked at the whole picture and Kim well she was beyond amazing – talking to us both, giving us so much time, empowering us together. 

We are lucky to have my consultant and Kim involved in my care and at the end of the day making the biggest decisions – and that’s what I need to hang onto.  If it wasn’t for the appointment we had with Kim I think I would be feeling a lot more worried but as it is I know what I want and I just need to make sure that’s communicated to the local hospital.

Monday, 6 April 2015

Epilepsy Midwife appointment ~ emotional rollercoaster!

I want to post this today as tomorrow we have our appointment with the reflections midwife at our hospital so it seems important that I get this up beforehand.

On our journeys with epilepsy we meet so many professionals all of who have some impact upon the way we view our own condition.  Not all those meetings will be positive and that's why it's so important to reflect on each contact.

In February I was lucky enough to get an appointment with the only specialist epilepsy midwife in the country!  I met here through some of the campaigning I have done with Epilepsy Action.  All I can say is she is amazing - her knowledge is incredible and her calm yet competent approach has given us some of the confidence we so greatly need.  The appointment has changed my expectations of pregnancy and labour and helped me feel empowered to do the best for me and baby.

Here's a brief summary of what we talked about:

Keppra and birth defects

Although it's still early days as far as the statistics for birth defects with Keppra are concerned the numbers are getting to be statistically significant and it's looking like it could be a safer drug than Lamotrigine.  Barely increasing the risk above base line.  Also there is no one birth defect which is showing as being linked to it - another thing which helped put our mind at rest.

Could it have been post traumatic stress?

So a major part of our appointment was reflecting on what happened during labour last time. Rich and me both ended up in tears and it was really hard talking about what happened.  We'd always felt our experience of labour hadn't been great - but hearing it from someone so specialist brought with it mixed feelings - relief that our fears aren't unjustified and hope that things could be different this time around.  Looking back I went through quite a lot and it's not surprising by the time I got home I was exhausted and traumatised.  Those first few months were so tough - I found it so hard to bond - could it have been partly post traumatic stress, hearing that gives me hope things could be better this time round.

Different this time around

I think that is the most important thing I am taking from the appointment - things could be so different this time around - I know now I want things to be as natural as possible.  No IV, no clobazam, no epidural.  As the midwife said I did most of the work at home on my own with a TENS machine last time.  I want as few hospital appointments as possible - I'm not going to be stupid about it but at the same time I don't want my pregnancy to become medical.  I want to go home as soon after having Riley as possible and if not I want Rich there with me.  All this is supported by the midwife and she's going to write it all down so I really feel like this could happen.

Monitoring drug levels

I have also learnt that there is mixed research behind monitoring medication blood levels.  That's not to say it's not worth it but they are not sure whether just because Keppra levels drop in the blood stream they necessarily drop in the brain - so if I don't have any big seizures why put my med dose up?  It's good to know if they are dropping especially if they go out of therapeutic range completely but has definitely opened up my mind to the pros and cons of it.

So all I can say is I left that appointment feeling empowered - like I do have a choice.  Things may well change, I might start having more seizures or something completely non-epilepsy related might go wrong but at least I know that it might be possible to have a natural labour and that for me is a good base line to work to.

Thank you to this amazing lady for helping turn this experience around for me - I went into the appointment so frightened and came out feeling empowered with a plan.

Wednesday, 1 April 2015

Riley’s proud to announce she’s going to be a big sister!

Yes, that’s right, and that’s the reason for rather a lack of posting in recent months on here.  I am now 13 weeks and 2 days pregnant, which makes the baby due on 5th October 2015.  Yesterday we had our first scan and I am so relieved that everything is looking good so far and it really makes the whole thing seem more real.

Sitting in the waiting room I had that same mix of excitement that we finally get to meet the baby and also fear that something could be wrong with the baby but all is ok and it is just so amazing to see baby on the screen.

So the first 13 weeks… well I knew I was pregnant literally a few days after I conceived – I felt sick and so tired, at least I hoped I was pregnant.  I had put my Keppra up after having a few focal seizures in November and so the alternative was that it was a side effect of the medication in which case we’d be looking at alternatives at the next appointment because I couldn’t live like that!

The next 2 weeks before I could actually do a pregnancy test dragged by but when those words came up on the test I was so relieved and excited.  Last pregnancy I had had a seizure by that point so things were going well.  I felt awful and was being sick regularly.

In my next blog I am going to talk about the appointment I had with the epilepsy midwife just after I found out I was definitely pregnant.  I can tell you it was a turning point for me – it made me realise what happened during my last pregnancy and labour didn’t have to happen this time – this time things could be different and that although I knew it would take some fighting for I wanted this pregnancy and labour to be more natural.

So I have now also had my booking appointment which went really well.  It was with a student midwife (overseen by a senior midwife) but she really seemed to understand how I felt, that I felt anxious about what happened last time and wanted things to be less medical this time.  They felt things hadn’t gone as well as they could and we are now seeing the birth reflections midwife next week so I will talk more about that after we have had our appointment with her.

They seemed to support me in having as few appointments as possible.  As I am under consultant lead care I will need to see the obstetrician once but they are going to make sure it is the consultant and not a registrar and then as long as everything continues to go well I can just see the community midwife at my GP like any other women would.

I don’t like to tempt fate but I have been a year free of convulsive seizures.  Now that can happen for me, I have been over two years before without one and then had one for no reason but it’s got to be a good thing.  I have actually been completely seizure free since November – I’m not expecting that to last but somehow I feel Keppra is working better than the Lamotrigine was… it’s early days and we’ll just have to see how things go.  I have learnt a long time ago not to get my hopes up too much – but I am going to be quietly confident – otherwise what’s the point?

So anyway the sickness is now easing and I can finally eat again which in turn is giving me more energy and I feel like I can get back to life again and all it brings which includes this blog.  So watch this space as I’m going to be blogging about becoming a mum again as well as being a mum already so there’s going to be lots to talk about :) exciting times!

Young Epilepsy Champion Awards

I was lucky enough to be invited to the Young Epilepsy Champion Awards last Thursday at City Hall in London.  It was also Purple Day and I can't think of many better ways to celebrate the global epilepsy awareness day than with so many inspirational people in the world of epilepsy in a breath taking venue overlooking London.  I was also quite chuffed because Rich keeps getting taken up skyscrapers for drinks and City Hall is one of the few he hasn’t been too!

It was an evening filled with inspirational stories and I don't know how the judges chose between the final nominees as they have all done such fantastic things to make a difference to the lives of others living with epilepsy.

The evening was hosted by Nicholas Owen who as always ensured everything ran like clockwork.  It was also fantastic to see other celebrities there showing their support for such an amazing event.  These included Olympian James Cracknell, Eastenders actors Cheryl Fergison and Himesh Patel, Athlete Dai Green and footballer Leon Legge.

I'll start by giving a run down of the award winners:

Supporting the Community Award ~ Zoe Reid for the amazing weekly epilepsy youth group she runs in Edinburgh.
Best Practice Award ~ Tessa Walker and epilepsy nurse in Islington.
Community Impact Award ~ Santander for their Big Build project at Young Epilepsy.
The Discovery Award ~ Dr Sameer Zuberi for their work in genetic testing in epilepsy.
Shaping Better Futures Award ~ Epilepsy12 looking at the quality of healthcare services for children and young people with epilepsy.
Speaking Out Award ~ The Daily Mirror for their continued coverage of epilepsy in a positive light.
Guiding Light Award ~ Ann-Marnie Row who was nominated by her student Toby for all the support she has given him and his family.
Bright Star Award ~ Ben Wilson who has been through revolutionary treatments involving much pain but never allowing his epilepsy to define him.
Shining Star Award ~ Alyce-Jayne Stockdale who never lets her epilepsy define her life.
Inspirational Champion Award ~ Owen Thurston for his work building awareness and helping others feel less alone.

All the award winners had amazing stories to tell but there were a couple of award winners who particularly inspired me and brought me close to tears so I want to talk a little bit more about them.

My Champion Award ~ Tre Pearce

Tre’s story could so easily be my husband Rich’s story – it drove home to me the sacrifice that our family around us have to make because of our epilepsy.  I think it helps highlight that the decisions we make in life don’t just impact upon us and so when we are talking to our doctors about life changing events like having a baby it is crucial that our family are involved in those discussions too.

Tre is just 21 and is devoted to supporting his partner who lives with epilepsy and their newborn daughter. Tre’s partner’s epilepsy became uncontrolled after having their baby and it could take her up to two hours to recover from a seizure.  Tre sacrificed joining the army to stand by his partner’s side and help ensure she and their baby is safe.  He is a true hero to his family and an inspiration to me.  They are a true team and something I hope Rich and me have built for our own family.

Bravery Award ~ Sienna Alderley

Now I will be honest here – Sienna’s story did bring me to tears.  When I looked at that gorgeous little girl on the stage I saw so much of Riley in her and it suddenly made me realise the responsibility we place on our children, and made me so thankful for Riley’s calm, sensible, caring nature.
I have just started to explain my epilepsy to Riley and when I ask her about it she proudly says “Mummy has epilepsy, sometimes she falls over and shakes and can’t hear me” and then if I ask her what she should do she says “stay with Mummy and tell her it’s ok” and then she will say “if I am at home I can press the big button on the phone in the house and tell Nanny Mummy’s not well”.  She’s 2 and she already knows all that – I am lucky that we have never had to try it out but I really feel she understands.

Five year old Sienna was watching Cbeebies when her mummy had a seizure. Her parents had taught her to call 999 in an emergency, and when Sienna saw her mummy having a seizure that’s just what she did. The operator who answered her call was also at the awards and it just made the whole thing seem so real.   You can hear her phone call here.

Sienna was presented the award on behalf of the many other children living with a parent or family member who has seizures and often go unnoticed for the care and support they provide.  It made me realise Riley is one of those children, because while she has never witnessed a seizure so much of her life is impacted by my epilepsy – whether it’s getting the bus because I can’t drive or not being able to have a bath unless Daddy is home so many little things would be different if I didn’t have epilepsy – so I guess that award is partly for Riley too.

Another wonderful thing that happened at the awards was I finally meet Faye Waddams in person – she is a fellow epilepsy and pregnancy blogger and someone who I am inspired by so getting to sit down and chat to her was fantastic.  You can read her brilliant blog here.

It was a wonderful night and showed the real progress being made in the world of epilepsy helping to build awareness and understanding of a condition which is often misunderstood and helping break down the barriers of stigma often attached to it.

Young Epilepsy are a national charity working hard to improve the lives of children and young people living with epilepsy by providing support, information, training and through campaigning.  You can find out more about the charity and award winners by clicking below:

Thursday, 26 March 2015

Raise some global awareness for Purple Day!

I firstly want to apologise for the lack of blogs in recent months – a lot had been going on behind the scenes (many of you close to us will know the details), I haven’t felt quite ready to share it all yet but hopefully next week we will have some good news to share with you all so watch this space!

But today is Purple Day and so that is what I want to blog about.  First of all Happy Purple Day to you all, I hope all my fellow epilepsy warriors have a seizure free day and that all your events are a success.  If you don’t have epilepsy thank you so much for taking the time to read my blog and learn a bit about epilepsy.

So Epilepsy Action are asking today – ‘What does epilepsy look like?’ That’s an interesting question… what does epilepsy look like to me?  Well to me it’s something that lurks in the corner, I am lucky because most of the time it doesn’t affect my life, I take my tablets and my seizures stay away most of the time just rearing their ugly head every now and again.  

But it is always there – impacting on the bigger picture, making me more reliant on others for lifts or just because I am tired, making me have to risk assess things I wouldn’t have thought twice about before.  But epilepsy has also given more meaning in my life – it has given me a way to help others affected by the condition and allowed me to meet so many inspirational people who have changed the way I think about life.

Tonight I have been invited to the fantastic Young Epilepsy Champion Awards which I am really looking forward to – it will be a chance to hear so many inspirational stories and I will share them with you all in my next blog which I promise will be in the next few days J

So once again Happy Purple Day everyone!

Tuesday, 20 January 2015

How do you explain epilepsy to a 2 year old?

I can’t believe that just a few months ago when Riley turned 2 we were worried she wasn't able to say much.  Now she talks and talks and can say pretty much anything she wants, I think of all the developmental milestones her speech has to me been the most amazing.  It’s just so nice to be able to walk down the road and have a conversation about what we can see and what we are going to do.

But now she is able to understand so much it has got me thinking maybe I need to start looking at how I can explain to her about my epilepsy and what she needs to do if I have a seizure.  It’s such a difficult thing to judge, so far I have never had a seizure while she has been there so if she saw me have a seizure it could really scare her.  Knowing what to do could really help but I don’t want to scare her by telling her too much or something she doesn't really understand.

Is 2 just too young? How do I go about explaining something so complicated to her in a simple way?  These are all the questions I have started to ask myself.  My mum bought me a lovely little book for Christmas which I think is where I am going to start.  It is called ‘Epilepsy Book for Kids’ by Layla Reid who is seven and whose mum has epilepsy.

This then got me thinking – everyone’s epilepsy is so different and everyone’s situation is different what would be lovely would be a personalised book for Riley, about my epilepsy – in fact maybe this is something I could actually look into – could I develop personalised books for children whose parents have epilepsy…

So I am going to do some research into it and maybe in the future I can take it further.  In the meantime if you have any advice about explaining epilepsy to young children I’d love to hear it – send me an email to