THE MITOCHONDRIAL DISEASE EXPERIENCE
Clap for a new NHS
As an unemployed person, who relies on the NHS I am made to feel like I should be grateful for the NHS, because it is free, like the doctors are doing us a favour. Sometimes I don’t feel like we are getting the service we clapped on during lockdown. The nurses are brilliant, I spent 5 weeks in hospital after surgery, for 5 days the only things I could move were my arms, I relied on the nurses for everything, I saw them work tirelessly, 12-hour shifts, dealing with awful patients, chaotic scenes and I witnessed them being talked down to by their peers, they are heroes, but there are flaws in the system.
The NHS isn't free
The NHS isn’t free, when I was working I paid tax, NHS is funded by taxpayers. If you are working, you pay your taxes, but not everybody needs to rely on the NHS. We have been sold this story about our “wonderful NHS” that we should be proud of, but should we be? I have friends who have moved to Europe where their healthcare experience isn’t comparable to the NHS, much more superior.
Healthcare shouldn't be a business
Although I have lived with my Mitochondrial Disease symptoms for 25 years I have mostly just got along with it. I have met some great, proactive doctors, who investigate the issues. I have met others who comfortably say “I don’t know” and leave it at that, or take forever to do things that could be time-sensitive whilst others get the most trivial things sorted ASAP.
Healthcare is different to any other business, but it isn’t always treated like it is. Whilst I was in my 5-week residency I saw basic admin tasks failed every day, I was waiting on an MRI scan result for 2 days because somebody hadn’t ticked a box (my surgery could have gone wrong but nobody checked). I felt like a nuisance when I asked a nurse or doctor to chase it up because the NHS is underfunded, so it is understaffed, they haven’t got time to do their own job, never mind somebody else’s job. It became an inside joke between your roommates, what will go wrong today, but going wrong isn’t a faulty printer or an unsent invoice, it is people’s health. I saw patients’ mental health deteriorate rapidly because somebody hadn’t done their job right, or their physical health worsened after another blunder by somebody who was overworked or undertrained.
These admin faults continued (and continue) after leaving hospital, especially when I lost my hearing. It has been over a year that I have been deaf, it is on my notes but they still try to call me. A couple of weeks ago I had a phone call appointment (which is ridiculous for a deaf person…) so I had to get my mom to call them and tell them to ring her, but they forgot to put it in my notes, so the doctor called me… I had to say “I’m deaf”, he ended up texting me from his personal phone, not ideal, it was fine, but it shouldn’t have happened.
Who really cares for your health?
If we look at the NHS as a business, the patients are the customers but some doctors act like they are doing us a favour. Then you have to think, who are they working for? The professors and consultants are like a mini business, their secretaries, doctors, juniors and nurses are their employees. Sometimes I feel like I am talking to a salesperson, being sold a service I might not need. Sometimes I go to appointments and think, why am I here? You don’t have anything to tell me, you can’t answer my questions, surely I am wasting your time? The NHS is underfunded, there is waiting lists, why have you booked me in for a 30-minute appointment just to say “I don’t know”? Are these consultants getting paid per patient on their book and I am an easy pay cheque?
I have been referred to another hospital for specialists who offer different skills. Since the referral, I have been told that what this other hospital is offering isn’t suitable for me. I emailed the doctor at this other hospital that I have been told what he’s offering isn’t suitable for me but he’s still insisting me to go on see him. Why? Why are you wasting your time on me? This referral was made months ago, surely that means there are lots of people waiting to see him, why does he want to see me? I am an easy pay cheque?
The System Is Broken
I am not ungrateful, but the system is broken and some of the top dogs are taking advantage of it.
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