NHS – The Sleepy Bookworm

Something plenty of chronic illness warriors are familiar with is the blood test. I’ve recently been having a number of blood tests at the hospital, investigating my innappropriate sinus tachycardia. It’s been a nightmare and I wanted to share my experience because I’ve found myself so frustrated with my own body and with elements of the healthcare system itself.

I’ve had a lot of experience with blood tests; although M.E isnt a condition that can be diagnosed with a blood test, it involves blood tests to rule out any other illness with similar symptoms. Unfortunately blood tests are a literal nightmare for me because I have deep set veins. The majority of people can see their veins, the blue lines running down the arms, in the hands and feet but mine don’t show up; my skin is literally just like a blank piece of paper. My veins also can’t be easily identified by feeling for them; this means that when I need a blood test, it’s incredibly hard to do. I’ve had 3 blood tests at the hospital in the last couple of months and everytime I’ve walked out with upwards of 10 needle holes, but no actual blood being taken.

One of the things that this experience has highlighted for me, is the cracks in the NHS system and the frustration felt by the nurses working on the front line; as well as my own frustrations as a patient. My recent blood test appointments with the hospital have been scheduled as 15 minute appointments; each one has lasted more than an hour, with the longest being almost 2 hours. It’s been frustrating for myself and for the nurses. The major problem has been that the blood department in the hospital does not have access to an ultrasound machine. This is needed for people with deep set veins because it’s one of the only ways to identify a vein and guide a needle to it. Without it, it’s like a game of ‘pin the tail on the donkey’ but with a lot more pain. With the ultrasound machine, there’s no guessing or estimating, the nurse can literally see inside my arm and know exactly where to find my veins. But, like I said, the blood room at my hospital doesn’t have this piece of equipment. I’m not the only person in the world to have deep set veins, i’m actually one of three people in my family who have this issue. There are so many more in the world and it seems like common sense to me, to have an ultrasound available in a blood room for these patients. During my last blood test, the nurses were discussing the fact that they’d requested an ultrasound machine for their department and it had been denied. I heard them voice their frustrations at not having that equipment despite having plenty of ‘hard to bleed’ patients and being turned down and ignored by their higher ups. It was insinuated that this is because the cost of the machine would outweigh the benefits. To me, this is nonsensical. My 15 minute appointment lasts over an hour, takes three nurses and sometimes a doctor, a whole tray of needles, swabs and other blood related equipment. Meanwhile a whole que of people needing blood tests and needing to see a nurse are piling up outside, clinics are starting which require the nurses busy with me and I’m sitting in this madness; thinking how an ultrasound machine would prevent all of this.

I experienced a development to this madness last week when; after 40 minutes of attempting to get a vein, I was asked to sit with my hands under hot running water. The nurses hoped this would bring up the veins in my hands. Warm skin is key in blood tests, it makes veins easier to find and see. I tried the sink located in the actual treatment room, and three sinks in the department bathroom; none of which had any hot water. This is a hospital; a place where hygiene is of the utmost importance, especially in recent years. I get that most hospitals are old buildings and pipes can be tempremental but this shouldn’t be an obstacle in this day and age. I couldn’t get hot water from any of the taps in that department, each one was ice cold. I don’t know if I’m crazy or over thinking, but to me hot water is a basic requirement in any hospital. There shouldn’t be a whole department of people trying taps and being unsuccessful in getting any hot water. I’m not even talking about a small hospital, this is a huge city hospital. The worst part for me, was seeing the frustration the nurses felt. They are being told to get blood from a patient but they don’t have the equipment they need to do so. Nurses working for the NHS now are suffering, departments are understaffed and there’s a huge backlog of patients. As I sit there, for hours being repeatedly stabbed for blood; the nurses are falling behind and having to apologise to their bosses; patients that are waiting are getting frsutrated and taking it out on them. I can’t help feeling like I’m wasting their time and that I’m a burden; and as a patient it’s a horrible feeling to have. I am seriously considering not going for my further blood tests because each time it’s so much pressure on the nurses and it’s them that get reprimanded for taking too long or falling behind. I hate causing a fuss, I hate being the centre of attention, I hate being a burden. But each time I go for a blood test it’s the same; I take up multiple nurses, multiple resources, hours of time needed for other patients. But I also can’t help feeling that this could be prevented if the bosses just supplied the department with a basic piece of machinery, the ultrasound.

It hits so much harder at the minute as taxes and National Insurance rise, the government state that this increase is to better support our NHS and help get over the covid backlog of patients; but I think there was serious underfunding way before covid hit. Departments not having access to machinery or even hot water is unacceptable and it’s those nurses and doctors on the front line that have to deal with this. It’s the NHS staff on the front line, working face to face with patients who take the brunt of the pressure and consequences. It makes it sound like a joke when the government justify rises in taxes etc on providing better financial support to the NHS, but there’s departments going without hot water and being denied necessary equipment because the cost outweighs the benefit. Why isn’t this money going on the basic requirements that enable nurses and doctors to do their job? why do they have to struggle for resources? It doesn’t give me any confidence in the government’s promises, their priorities are so skewed it’s laughable. I suspect the money they spent supplying alcohol in their lockdown parties could have paid for an ultrasound machine and that’s what cuts the hardest.

My recent experience isn’t a one off, I’m sure there are countless other patients feeling let down and abandoned right now. But I think it’s important to remember that this failure isn’t caused by the people working in the NHS. I’m always surprised when I go for my blood test at how selfless and supportive the nurses are with me. They know when they see me in that blood room that it’s going to take a prolonged amount of time and effort to deal with me but it never shows in their attitude, they continue to be kind and compassionate towards me. I think it’s important to remember that these front line workers are doing their best but their work is made ten times harder when essential equipment and resources are withheld from them. It shouldn’t be this way, and it’s a huge failure by officials to let it continue this way.

I’ve been feeling very down this past few weeks and dealing with a lot of ‘imposter syndrome’ feelings. ‘Imposter syndrome’ is a mental state in which you experience overwhelming feelings of self doubt and you question your own knowledge and experience. I think it’s a very common feeling with a chronic illness, especially one that is often viewed as an ‘invisible illness’. The feeling of being a fraud, doubting your symptoms, believing it’s all in your head. The majority of this comes from other people’s opinions and judgements of chronic and invisible illness. Sufferers like myself, of chronic or invisible illnesses receive so much criticism and doubt, harsh judgements from people who doubt our illnesses and believe us to be inventing illness or exaggerating. All of this judgement and lack of understanding leads to this ‘imposter syndrome’ where we begin to question our own experience and we end up feeling like frauds because that’s what so many other people think.

My recent experience with imposter syndrome was triggered by the need for a covid booster jab. I received my first two covid vaccines in group six, the vulnerable group. Group six of the JCVI priority list included people with neurological illness, which M.E is classified as. Despite this, thousands of M.E sufferers were refused because M.E was not on the list of example neurological illnesses and many health professionals don’t know M.E is even classed as neurological. I used a letter composed by the M.E Association to inform my GP of why I should be eligible for a priority covid vaccine and my GP instantly agreed and I was booked in that week. I was so surprised to receive that understanding and agreement, I’d convinced myself it would be a fight for acknowledgement, like so many things with chronic illness are. I’m still extremely grateful for that understanding, and I felt extremely lucky to have my covid vaccines despite my young age.

Now over six months has passed and the booster jab has become available for those who had their initial vaccines in the ‘at risk’ group. I’m eligible with a long term neurological illness once again, but I’m refused at every turn. The NHS booking system won’t allow me to book a booster jab because I’m only 27. Despite it clearly saying any adult can book who has a long term illness and is at risk of developing serious illness from contracting covid, I cannot book a booster appointment. The system just keeps repeating that I’m not eligible. I’ve rung 119 who had no interest in my eligibility, who repeatedly told me I’d have to go back to my GP and have them arrange it. I’ve spoken to my GP who says I am automatically eligible because I was included in the ‘at risk’ group for my first two vaccinations, but who has no ability to book me a booster appointment. The 119 NHS advisers send me to my GP, who sends me back to 119 and it’s this vicious circle that doesn’t end or have any conclusion. I’ve been going through this vicious circle for 2 weeks and the whole experience has left me ashamed, disappointed, and devalued as a person. It’s triggered an ‘imposter syndrome’ feeling because it feels like at every turn I’m denied, I’m ignored and I’m left feeling like a fraud. Because every time someone tells me M.E isn’t one of the listed illnesses, every time someone says they’ve never heard of M.E or it doesn’t make me eligible; I start to believe it. I am eligible, I have a right to get my covid booster but I’ve been refused so much that it’s left me feeling like I don’t deserve the booster, like I’m not eligible and I’m a fraud for trying.

It’s reminds me of my first experience and diagnosis process with M.E; of continually being told I was healthy and my symptoms were in my head, being unbelieved and ignored. It causes this feeling of shame and self doubt that is so destructive. I see thousands of other M.E sufferers experiencing the same fight and it just breaks my heart. We spend every day fighting fatigue and pain; we shouldn’t have to fight for acknowledgement and acceptance. We shouldn’t be refused and ignored because we don’t have an illness that is always physically visible; we shouldn’t be denied because of ignorance. Once again, M.E sufferers have to fight for something we are eligible for because our illness is misunderstood and not as well known. It’s extremely frustrating and I’ve felt like screaming numerous times in the past weeks. My GP has suggested I now go to a walk in clinic and I have an appointment booked for that in a couple of weeks but until then I won’t find any relief. I’ll constantly be worrying about getting there and being turned away because the system tells them I’m not eligible. I’ll worry and rehearse the argument and proof that I am eligible. I’ll have endless nights worrying that I will be refused, ignored and treated like a fraud. It’s ridiculous that in this day and age, M.E is still an illness which requires so much argument. It’s unacceptable that M.E sufferers are denied something because a computer system doesn’t recognise M.E as a valid illness. It’s unacceptable to be ignored and discarded because it’s too much effort to change the system. It’s unacceptable that we’re still so disbelieved and disvalued. I feel extremely let down by the NHS, by the government and society. Having M.E should not be a life sentence to fight for recognition, it shouldn’t be a constant struggle to access treatment and understanding. M.E and other chronic/invisible illness sufferers shouldn’t be made to feel like ‘imposters’ or frauds. We deserve the same understanding and attention as anyone else with a long term illness.

The Sleepy Bookworm

Tag: NHS

Hard to Bleed

Imposter Syndrome with M.E – My recent experience with the booster jab.