2015 was not last year

We are now six months into 2017 but my brain is still failing to catch up after last year. I am still catching myself thinking that 2015 was last year or writing the date as 2016. It’s almost as if 2016 didn’t happen at all and throughout all the years of chronic illness this has never happened to me before.

Last year holds very few memories for me, much of it is a vague blur. When you look at what occurred last year it's hardly a surprise. From the start of the year I started to experience what I believed to be migraines several times a week. Over the course of three months they became daily and at the end of March 2016 I collapsed in the shower due to the pain. It was immediately diagnosed (correctly) by my gp during a home visit to be a low pressure headache caused by a CSF leak. My gp spoke to my PoTs / EDS consultant who advised increasing my salt tablets (salt can increase CSF production). I spent much of April in bed, three weeks after I collapsed I was referred to a neurologist who specialised in CSF Leaks. First hurdle jumped through or so I thought.

Despite my referral being marked as urgent, my referral was refused. This is not uncommon these days as many hospitals now employ admin staff (not medically trained staff) to sift through referral requests to see which ones they can deny and which ones they will approve. At the hospital the consultant was based, insider knowledge from an anonymous source informed me 60% of referrals to neurology were being denied for spurious reasons. When I still hadn’t heard anything back from the hospital by mid May (and now in daily agony) my referral was submitted again. By the end of the week I had an appointment for 22nd June, the day before the EU referendum vote hence why I can never forget date, as it was discussed in my appointment. Now cynical me would say what a devious strategy for hospitals to keep their waiting lists down by refusing to accept 60% of referrals. But with the UK at the polls today for the General Election, you’ve probably been all politicked out, I know I won’t be sleeping tonight whilst I wait for the results to come in.

A week after my hospital appointment in June I was admitted to hospital for various tests and the hope that I would get an epidural blood patch done. Those of you who regularly follow my blog will know that I didn't get an EBP done but instead started monthly caffeine infusions and occipital nerve block injections. With the introduction of the infusions and injections things did improve a little but I was still pretty much incapacitated every day to varying degrees.

On the worst days I would be in bed for 20-24 hours, unable to lift my head up off the pillow whilst violently throwing up. My bedside bin (lined) became an impromptu sick bucket and I became an expert at throwing up whilst lying on my side. My world really began to shrink, much of the time I couldn’t watch TV or use a computer / phone as the light emitted was too bright even with sunglasses on. I ended up listening to audiobooks or the radio to pass the time. The back of my head and neck were permanently red from lying on hot water bottles. Days, weeks and months merged into one, something I am not surprised about as this is the worst medical condition I have had to deal with.

I look back now and I am surprised that I got through this at all. I was lucky as I had the support of my husband, parents and friends. Someone without that support network would have really struggled. When I was able I could also get support from a Facebook group for those who have a CSF Leak, they helped me in so many ways. I now realise that I have probably been leaking on and off since I had a lumbar puncture in 2009. Although it’s not completely gone away, I still have days where by 2-3pm I have a headache start that will only go away if I lie down, I have quality of life back. Lying in a darkened room completely alone for much of the time is no way to live. I have to be honest I don’t know how I would have coped if the pain hadn’t suddenly dramatically reduced just before Christmas last year. You don’t realise how much you have even when chronically sick before, until it’s gone. It really shocked me how quickly life as I had known it had been taken away.

Even though I know 2016 happened and have snapshot memories of things that happened, it does feel like life completely passed me by. It is a really bizarre situation. Obviously it’s quite normal at the start of the year to think the wrong year was last year, for example in January 2017 you were still probably thinking 2015 was last year (or maybe that’s just me?) However it’s June now and I am still struggling to accept that 2016 has been and gone, that 2015 wasn’t last year its two years ago now. It a really hard thing to describe unless you’ve been through a similar situation.

I realised just how caught up I was in still thinking that 2015 was last year when I had to correct myself when speaking to my hairdresser this week - again something I rarely had done last year was my hair! I explained that I was caught up in this brain trap due to losing much of last year to being so ill and she totally got it. Some people I have spoken to about it don’t or can’t understand how you can lose a year but realistically it must happen to many people for a variety of reasons. 2017 just seems so alien to me it takes a conscious effort to remind myself it is this year. One mantra I am repeating constantly is 2015 was not last year. I have six months left to recognise this year is 2017, let’s hope it’s sorted by 2018!

Democracy in action part 2

"Illness is neither an indulgence for which 

people have to pay nor an offence for which they should be penalised

but a misfortune, the cost of which should

be shared by the community"

Aneurin Bevan - Founder of the NHS

Things have moved quite quickly since part one of this post so I will try and update you all the best that I can.

The hospital had asked me to email them with all the details regarding my mother's case six days after I had sent those first three tweets (detailed in the last post). The following day I wrote a strongly worded email to the hospital explaining that the longer my mum waited for the operation the more permanent nerve damage she would suffer and the less improvement there would be from the operation.

By lunchtime the following day I was yet to even receive an acknowledgement email from the hospital. I thought that this was very bad manners on their behalf and took to twitter again to express my dissatisfaction. Let me be clear I wasn't expecting a resolution to my complaint but it is standard practice to at least acknowledge an email. It had taken them six days to respond I was not going to allow them a further six days to acknowledge my complaint.

As I started having a nosey at what had been tweeted about that day I noticed a lot of the content was about Prime Ministers Question Time (#pmqs ) and the NHS waiting lists. In parliament that day an MP had raised on behalf of his / her constituent the fact that a patient was waiting 33 weeks for surgery. A lot of MPs that I follow were calling on the government to take action. 

My husband and I normally watch PMQs as he almost always does a late shift on a Wednesday, this week however he had gone in early. Without him being at home I had completely forgotten what day it was and that PMQs would be on. As MPs and people I follow were discussing the NHS I thought this would be as good a time as any to try and bring my mother's case into the spotlight.

I tweeted several MPs one retweeted me that was Labours Diane Abbott, which I was extremely grateful for. I continued to tweet about the hospital and contacting any MPs I could think of that may be interested. This is just a small sample of the tweets;

Rachel Morris @kidmorris · Jul 2

thankyou @HackneyAbbott we can't get @garystreetermp or @Jeremy_Hunt interested in my mum's case. She is a carer for my disabled sister

Rachel Morris @kidmorris · Jul 2

pls @Ed_Miliband @andyburnhammp rtwt why has @XXXX got a 12 month wait for spinal surgery? Mum needs surgery as she is a carer.

Ben Bradshaw ‏@BenPBradshaw  Jul 2

@kidmorris could you e mail me re that? She has legal right under #NHS constitution to be treated within 18 weeks xxxxxxx@parliament.uk

I am really sorry that the last tweet is highlighted in white, I have tried my hardest to remove it but it refuses to go! If you look at my twitter account you can see how busy I was firing off tweets to anyone I could think of. Suddenly the MP for Exeter was interested and he mentioned the NHS Constitution, something I profess I had never heard of before.

Ben Bradshaw's tweet was like a light at the end of a long dark tunnel. I emailed him immediately explaining what was happening with regards to my mum's case and then I started googling the NHS constitution. 

The constitution was a real eye opener it explained the 18 week time limit from referral from your GP to the time you get treatment via your consultant. The hospital could no longer have the advantage with my complaint as now I knew about the constitution and as they say knowledge is power.

As soon as I received a tweet from Ben Bradshaw MP the hospital contacted me via twitter, wanting to know who I had emailed and when it had been sent. I replied giving them the email address they supplied me with and confirming yet again that I had emailed them over 24 hours previously. Within 2 hours I had an email responding to my complaint. Funny how these things happen isn't it?

I responded to their email by informing them that I now had several MPs involved / interested in my mum's case and all future correspondence from themselves would be forwarded to those MP's. This seemed to have the desired effect as they then emailed me back informing me as I now had an MP involved my complaint would have to be dealt with via their formal complaint procedure. I never asked for it to be dealt with in any way other than formally. Strange isn't it that now they knew that I had knowledge of the NHS Constitution (which explained the 18 week rule and the formal complaint procedure) and now that Ben Bradshaw was interested that they suddenly started taking my complaint a lot more seriously. I know I sound cynical but it had taken them 6 days to respond to me on social media the previous week, yet kick up a bit of fuss, name and shame them on Twitter and suddenly they spring into action. 

My mum's condition has taken a turn for the worse and last week whilst staying at the caravan she spent the whole week in an awful lot of pain. Whilst at the van she received a phone call from the hospital asking her to attend an appointment with her neurologist. My mother pointed out to the caller that she hadn't seen her neurologist for several months and that her case was now being dealt with by a neurosurgeon as she was waiting for an operation. The caller stated that they would look into this and my mum thought no more about it.

During the same week I received an email from the PALS department who are handling the complaint asking for my mother to fill in a medical records release form. To deal with her complaint they needed to have my mother's medical records so that they could see what I had been informing them of was true. I informed them that mum would be returning from holiday shortly and once she had she would complete the necessary paperwork to allow them access.

My parents returned from their stay at the van last Thursday and found a letter from the hospital waiting for them. The hospital had written to my mum inviting her in for a CT scan on her spine next month. Things appear to be moving now.

My mum had been informed by her neurosurgeon in June that before her operation could take place a CT scan of her spine would be performed so that he would have an up to date picture of what was going on before her surgery. She was told that this would take place only a few weeks before the surgery as any earlier than that and the situation could change before the operation. It would be a waste of resources to complete a CT scan now and then make her wait a year for surgery as she would require another one.

Although nothing has officially been confirmed we are hopeful that mums surgery will take place in August. Mum is not exactly thrilled, she is struggling to come to terms with the fact that she needs spinal surgery and that it will be a long road to recovery. I understand her fear and reluctance, the surgery as with any surgery comes with risks - paralysis, loss of bladder / bowel control but the risks she faces with surgery are the same essentially that she faces in the long term if she refuses surgery such is the seriousness of her condition. Its very hard to see he this scared and I feel like I have forced the issue. She admits herself she has been living in denial about it but deep down she knows the operation must go ahead.

The hospital have 25 days from my complaint going formal to respond in full. So I am waiting to hear what they have to say for themselves. We have still been unable to get my mums MP interested in her case using twitter. In the next week I will email him directly and see if this provokes a response. I hope that it is not party politics that is preventing him getting involved and just an oversight such as he hasn't seen the tweets or has been away on holiday. Jeremy Hunt The Secretary of State for Health is also yet to respond but I should imagine his twitter feed is filled with stories like my mothers and plenty of abuse seeing as though he belongs to a political party that seems hellbent on destroying the NHS and the welfare state.

Yesterday I received a letter on  official The House Of Commons paper Ben Bradshaw MP had written to me to inform me that as neither my mother or myself were in his constituency he was bound by parliamentary rules not to get involved any further in our case. This was quite a blow as I had hoped that he would be able to apply pressure and ask questions of the hospital. It seems democracy is only in action if its in the interest of your MPs party. Ben Bradshaw is a Labour Party MP, the party that founded the NHS, both mine and my mothers MPs belong to the Conservative Party. The Conservative Party aren't great supporters of the NHS and are deliberately running it into the ground with the aide of the Liberal Democrats so they can sell it off to their chums in private health care.

Although my mum's case seems to have moved forward I am feeling a little despondent. Despite all my hard work the scandal at my mum's hospital is still going unnoticed by those in power. Those who are interested hands are tied due to us not being constituents and there are many other people languishing on NHS waiting lists because they don't know have the knowledge to challenge their local hospital or are not social media savvy and are unaware of how to make a fuss. 

The trolls who contacted me on Twitter - yes I attracted trolls, due to complaining about NHS waiting times, said I was wrong to highlight the case of one unfortunate person when the NHS had done so much for so many others. My aim was not just to improve the lot of my mother but to draw attention to all patients of this hospital who were being made to wait more than 18 weeks for treatment. Its a hollow victory for me if it is only my mother who benefits from this.

I hope that through my blog and my own facebook page I have educated others about the NHS Constitution and how to complain to your local hospital should you be facing a wait of more than 18 weeks. That will be my legacy.

NHS Constitution

The Handbook to the NHS Constitution

How do I find out who my MP is?