Democracy in action part one

The NHS belongs to the people. 

It is there to improve our health and wellbeing, supporting us to keep 

mentally and physically well, to get better when we are ill and, when 

we cannot fully recover, to stay as well as we can to the end of our 

lives. It works at the limits of science – bringing the highest levels of 

human knowledge and skill to save lives and improve health. 

It touches our lives at times of basic human need, when care and 

compassion are what matter most. 

(opening paragraph of the NHS Constitution 2013)

 

The NHS is an immense source of pride for many people in the United Kingdom, I am one of them. People who don’t have this kind of health care system don’t understand it. During this post I will try and help demystify it as I am aware that many of you who read this blog are based outside the UK.

 

 

In my blog I have criticised healthcare professionals but I always try not to criticise the institution. I know that should an insurance based system ever come into effect I certainly wouldn’t either a) get cover or b) be able to afford it. Its something that worries me greatly.

 

 

I want to share a story with you, its not my story for a change but that of my mother who has kindly given her permission to share it with you. It also lets you know what I get up to when I am not actively writing blog posts and why I proudly say that despite my disabilities I am quite capable of being what I term an “armchair activist”.


Let me tell you about my mum, she is the greatest (I know everybody says that and my dad is too). She has been my sisters main carer for the last 24 years. For some of those years my sister was bed bound, having seizures and was just incredibly unwell. My mum took on the lions share of looking after her whilst trying to work at the same time. My mother and I split a lot of the caring duties between us for a few years but on the whole she is the one who has performed the role, as any mother would. 


My mother rarely complains she simply doesnt get time to. As all mums out there know your needs come bottom of the list. You fit them in when you get the time to. For about the last 12 months I have become increasingly worried about my mum’s health. She had been having the occasional fall, had become very unsteady on her feet and instead of the usual whirlwind that was always in perpetual motion she has slowed right down. The person she had become wasn’t the person I knew her to be. She used to complain to me that the bottom of her feet hurt. She had been diagnosed with fibromyalgia, we expected the fatigue and pain. However I had a sneaky suspicion it was something more and eventually mum found time for herself. I think this was after she had a really big fall and scared herself.


My mum was sent to a neurologist (if you’ve followed my blog from the early days you will know that they are my least favourite type of doctor). The suspicion was that mum could be suffering from Parkinsons Disease. It was a scary time for all of us. We had taken mum for granted, expected her to always be there and now we were faced with the prospect of there being something hideously wrong with her. I will be honest there have been tears and sleepless nights over it in this household.


The neurologist was brilliant (I know I don’t believe I am saying that either). He was so thorough there was blood tests, x-rays,  MRI scans, neuro physio sessions. My mum really got on well with her neuro physio and the physio was quite honest with her and said “Jill, I don’t think you have Parkinsons, I think there is an issue with your back”. That was reassuring whilst we waited to find out what was wrong with mum.


Eventually all the reports came in and the news was good and bad. Mum didn’t have Parkinsons but there were major issues with her back. The physio was right and dont worry mum made sure the physio knew that she had been correct!

 

My mum needs major spinal surgery. The kind of spinal surgery that will take 6-12 months to recover from. Mum needs to have a reduction of a deformity in her spine to relieve pressure on a nerve root and to fuse L5 and S1 amongst other bits and pieces. The surgical hardware that will be used to scaffold her spine, in just one part of the operation will cost more than £6000. Without the NHS this operation would cost at least £10-£20,000. Not the kind of money us normal folk have lying around for a rainy day.

 

This surgery is not cosmetic, it will essential preserve her ability to walk something she has been slowly losing for the last 12 months or more. In fact when her neurosurgeon met her for the first time he couldn’t understand how she was still managing to walk, albeit these days with the aid of a walking stick. Walking sticks  conjure up the image of a frail little old lady. My mum is far from that at just 58, not at all old in anyones book these days. (Not that I am remotely suggesting that healthcare should be limited for those over a certain age, healthcare should not be rationed due to age or for any other reason).

 

Due to the waiting time in seeing a Neurosurgeon on the NHS my mum chose to pay for a private appointment. The system is quite strange here in the UK it works on a kind of two tier system. You can buy private health insurance policies and they will cover most operations but not emergencies, intensive care or high dependency unit stays. People mainly have these policies as part of an employment package but you usually have to be earning well above the national average (£26,000 pa) to be in a job that offers that kind of remuneration package. Most of us “common” people use the NHS, free at the point of use and that doesn’t turn anyone away regardless of their financial situation.

 

Waiting times to see a consultant in the UK can be a long time, months in some specialities. Mainly due to a shortage of doctors within that speciality because if you’re going to save money you save it from the airy fairy stuff like dermatology and immunology, (not my reasoning and not what I consider acceptable) departments that a smaller percentage of the population will use. It makes sense on paper for the pen pushers, the people that don’t feel the repercussions of this. It doesnt make sense for those that live with painful conditions that restrict their lives. 

 

Unfortunately many people (like me) are blissfully unaware of the NHS Constitution and the Maximum Waiting Times. I only found out about them this week and I wonder how many people are simply putting up with excessive waiting times to see consultants / have operations / start treatments purely because they don’t know the “rules” and their right to complain?

 

My mums appointment went extremely well the consultant explained what was happening with her back, talked her through her MRI results and explained that the best chance of significant improvement (there is too much damage for a 100% recovery) would be through an operation. My mum needs a spinal fusion, alleviation of a spinal stenosis and a few other things. Basically a very big operation and I won’t bore you with the detail. 

 

Then came the kicker, yes my mum needed the operation, the longer she goes without it the more nerve damage she will suffer. She has already lost the reflexes in her knees and ankles. However the waiting list for spinal surgery is 52 weeks. 

 

Initially like anyone my first concern was about my mums medical condition. to say I was reeling from the shock of it all would be an understatement. No one likes to think of anyone close to them needing a huge operation or having something wrong with them. As I slowly got my head around what my mum had told me I found I could accept that there was something seriously wrong with her spine but what I couldn’t accept was that she would be waiting until June 2015 for something to be done about it.

 

When my mum told me that, I was shocked. How on earth could anyone within the hospital think that a years wait for surgery was ok? During the years wait more damage to my mums spine and nerves into her legs will occur. By the time the operation happens my mum could be in a wheelchair, have lost control of her bladder and bowels. How could that possibly seem right to anyone in the medical profession? 

 

However its not the medical profession that is making the decisions its people that may have zero clinical knowledge that are deciding whose operation (after emergencies) takes priority. In my mind that is not how a healthcare service should be run. Especially when CEO’s of hospitals make salaries in the £100,00-£250,000 category. That money could be better spent elsewhere.

 

 

I have written a few posts in the past criticising social media or rather a few personality types you come into contact with in this medium. However there are many occasions when social media is a source for good. I will (I hope) always give credit where credit is due. Twitter is a fantastic way of getting a message out there and getting it to the widest possible audience in the shortest amount of time. All you need is a few influential people to respond to your tweet and then things can take on a life of their own.

 

The day after mums appointment I started with some trepidation to see how far I could push this thing. I knew I had to be careful regarding libel laws and remaining respectful at all times despite the fact I was extremely angry. As my personal facebook profile is extremely private and my The Myasthenia Kid Page on facebook only has a modest following, my Twitter account @Kidmorris was going to be the best medium to use.

 

This was my first tweet, I have blanked the name of the hospital for legal safety reasons – I don’t have any money if they try to sue me. Although everything I have said is 100% true, I don’t have 24/7 access to legal counsel. So hence my hesitancy on making their name public on my blog which has a much larger following than my Twitter account.

 

why is there a 12 month wait for spinal fusion surgery at XXXXXXXX ? people waiting in pain barely able to walk. shame on you!



 

 

 

 

 

 

 

 

 

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Bouncing back or not …

Its been over a week since my last adventure (acute urinary retention) and bouncing back I am not.


It seems the cellulitis (x3), the kicking off of my symptoms in February and the latest thing to add to the catalogue of disasters that 2014 has brought, acute urinary retention has depleted any energy reserves I had as back up.


I am back to a state I last saw in early 2007 / 2008, where just getting up and showering is a major achievement. Frustrating doesn’t even seem to cut it. It seems 2014 doesn’t want to allow me any steps forward but is keen to make all the steps I do take are backwards.


I used to bounce back within a week or two from events such as these. I knew bed rest and cutting back on activities would “reset” my system. It seems that function is no longer available. I am sleeping most afternoons and adding that to what I am sleeping at night and its getting on for over 13 hours a day. Something I haven’t done for such a very long time. I know that this means that I am very sick or recovering from being very sick.


Since being catheterised and it subsequently being removed, for over 7 days I was left with reasonably painful bladder spasms that werent really responding to buscopan or opiate painkillers. The only relief I could get was a hot water bottle and to lie down. Only that always kicks my back off especially when you add into the mix that I have been sleeping for 13 hours plus a day. And my electric blanket appears to have died. I didnt think that things could get much worse lol!


Every part of my body is aching, I am struggling to think straight. I have transient moments when I can converse proficiently but the rest of the time I am struggling to follow a conversation or understand most things my husband is trying to talk to me about. Fun it is not.


I am hoping that scaling back on my activities (not that they were vast anyway) and spending more time resting will do the trick. When you have been stable for a few years and then suddenly take a nose dive its scary. Add in that the doctors don’t know why my condition is deteriorating or why its come about in the first place? It makes for a bumpy ride.


I try not to spend too much time navel gazing as it gets me nowhere. My mood is low, which is hardly surprising with so much being thrown at me at the moment. I am not depressed I am reacting in a natural way to the events taking place in my life. I can still laugh, smile and look forward to things in the future. I am still enjoying all the things that I always have. I am just so very sick and tired of being sick and tired at the moment.


I apologise for this being such a “down” post.


Post script:

My blog post was completed towards the end of last week and I am happy to report my mood has lifted. Probably helped by spending the day with a dear friend celebrating her birthday.

 

Unfortunately on Monday night  (30th June) a mosquito or mosquitos decided to bite me 4 times. You can probably guess what I am going to say next……cellulitis, although it could be Skeeter Syndrome. I have one bite on the back of my left hand, that has made it swell up so much you would think I had broken it. Two further down my left arm that have also ballooned and one on my flank which is now deciding to swell and is 5cm in diameter. I am currently waiting for my gp to ring (its got so frequent now that the surgery staff no longer confirm my telephone number!). So more antibiotics and possibly prednisolone will be thrown into the mix. Its never a dull moment here!

Tuesday morning (left hand)

 

Tuesday Evening left hand

 

Tuesday Morning Left Arm

 

Tuesday Evening Left Arm

 

I am now on antibiotics for the next seven days and have to have a load of blood tests done next week.