I am SO blessed to say that all of my treatment has been covered by the NHS. I can’t even begin to imagine the trauma of not being able to afford treatment, and thinking about the fact that other patients with Ewing’s Sarcoma have to crowdfund to purchase treatment makes me so sad and angry.
But, the NHS always seems to be a hot topic in the news here in the UK, especially recently amongst the whole Brexit drama. There’s a lot of talk about budget cuts, failing departments, and overworked staff. And these things are impossible to solve individually, but there are things we can do to help. This is the approach I take because I really believe it is our own responsibility to get the most out of each appointment we can, because we’re so blessed to have them! Even though most of those appointments come with frustration.
A very difficult part of remission is not being an urgent case anymore. During critical treatment, you are first on the list, the most important patient, you have a whole team ready to go. Then, once in remission, you go back to being a normal patient. Your treatment is no longer urgent, and you’re no longer at the top of the list. That can be extremely hard to deal with, especially as there is usually so much aftercare needed and you don’t feel very different to how you did just before becoming all clear.
Soooo… here’s what I do to make the most of an appointment as a normal patient!
1. Write a list beforehand
Think about what the appointment is really for. What do you want to bring up? What do you want to get out of it? I compile a list as soon as I make the appointment or the reminder text comes through because I suddenly think of all the things I want to get out of it and somehow forget them by the time the appointment comes round. It’s easy to get flustered seeing a new doctor and tell them that you’re fine and rush out the door. That’s what I used to do, but now I prepare a list to show them so that I actually make use of the appointment rather than just getting through it from fear of having to have more treatment.
The best way I can show you this is with an example, because the list varies greatly with the type of appointment.
e.g. 1) Physiotherapy
I write down all the difficulties I have in order of importance, the exercises I currently do, what I want to improve, and how I think I can improve them.
So, my notes will look something like:
- Trunk rotation
- Quad weakness
- I already do: swimming, pilates, core workouts, and a lot of walking.
- I mainly want to improve my ankle and hip flexibility and overall limp/ posture and muscle weakness.
- Should I try to walk less throughout the day e.g. at work?
- Are there any classes I should particularly go to, will classes actually make my back more painful?
- Is using a cross trainer beneficial or am I just powering both pedals with one leg like I do when walking?
- Would a personal trainer be able to help or not?
That’s the general list I make for a specific appointment like physio, for my yearly oncological clinic I have much broader questions and issues; fertility, mental health, getting the right care in my area, orthopaedic issues, and pain management. For these issues I usually think they can be improved by a referral to my local clinic where I then make an appointment and write a more specific list like the one above.
2. Know the outcome you want
Whenever I see a new consultant / GP they often comment that I have clearly thought out this appointment and have taken a professional approach to managing it. And I’m like yasss hun do u want to see my list, lol. But in all seriousness, sometimes you have to be very clear in what you want.
GPs especially have a quota/target number of patients they should be sending to expensive clinics, and you want to be on that list. With mental health in particular, prescribing anti-depressants is their first, and cheapest, port of call. But if this isn’t want you want, confidently explain to them that you feel you would benefit much more from talking therapy etc.
It’s important not to be aggressive or demanding with the outcome you want. Yelling at a doctor to give you something won’t make it happen and you must remember to remain calm and authentic when you explain your preferred outcome. If you’re really stressed about needing a referral, tell them. Explain to them clearly and concisely that it keeps you up at night. They won’t understand how much it affects you unless you tell them.
E.g. I once made a GP appointment because I found a lump in my boob. It didn’t quite go to plan. The GP felt it and said it was nothing to worry about at my age. This raised alarm bells in my head and I clearly looked confused / concerned so she told me that girls as young as me didn’t get cancer. My jaw literally dropped and I looked around like ? ?? ???? U sure? I then asked if she’d read my notes and it turns out they hadn’t been sent over from my previous GP yet, so she had no idea that I was ever a cancer patient. This obviously wasn’t her fault but by knowing the outcome I wanted was a mammogram/echogram, I stuck to my guns and pushed for it rather than saying ‘oh, ok’ and leaving feeling deflated and worried.
3. Keep calm
Ah, keeping calm in a hospital. That’s not an easy task. I feel that my experience of working in customer service has weirdly taught me a lot about seeing a health professional. A lot of what they do is ‘customer service’. No one wants to be treated badly, especially if what they’re just trying to help you. There’s no point in yelling I ‘WANT TO SEE SOMEONE NOWWWWWW’ to a receptionist who clearly is not in control of how long previous appointments have taken.
So I always have a chat with everyone I am seen by. I ask them about their day and how they are etc.. It makes you both actually connect like humans are supposed to instead of being uninterested and rude. I feel like this also spreads your calmness and gets everything done quicker.
4. Expect the worst
Well, this sounds like terrible advice. Hear me out though, I do have a point!
DO NOT expect to be seen on time. As previously said, the NHS is overloaded. There will be a waiting time for most appointments. It’s most likely that you’ll be seen half an hour after your time slot. Think back to your last visit to the clinic for an estimate, or call the receptionist to see if they can give you an estimate for a new clinic (sometimes you can tell by their tone of voice that it’s usually long).
Instead of getting frustrated about it, use the time like you would on a commute or at home. Bring something to do. I always bring my laptop because most hospitals have free wi-fi now so I will get on with work or watch Netflix if I’m feeling anxious or bored. There’s nothing worse than getting slowly more frustrated as the minutes tick by. I used to sit there like wow ok we are 17 minutes late now, now we are 24 MINUTES LATE, etc.. And did that help me get seen quicker? Nope. Did it make me unnecessarily angry and annoyed before I even spoke to the consultant? Yup.
So bring something to do, and book half the day off / the whole day off. I would ask for afternoon appointments if I knew there would be a long waiting time so that I could work in the morning, leave at lunch, and not be worried about getting seen in time to go back. I also always get an extra hour or two on my parking ticket, you can always give it to someone on their way in to make their day a bit better too!
5. Make conversation
Yup, I’m the weirdo that talks in the waiting room. I just find a whole room of people waiting for the same thing sitting in silence really odd? Like, why not pass the time and connect with each other? Obvs I get it if you’ve got headphones in, I’m not a maniac haha, but if I see someone who is clearly there for the same thing as me, I always say hi and try to spark a convo. It’s nice to speak to people if you’re feeling anxious, and y’all know I’ve been on this road a long time, so I usually speak to people if I think they’ve had similar treatment to me more recently than I had mine, to try to reassure them by simply having been where they are now.
6. Always call if you can’t go
ALWAYS! Even if it’s the same day! Call reception and tell them if you can’t make it, for whatever reason. I’ve called before because I’m too hungover. It’s shameful, but it’s better than leaving your doctor waiting for you to arrive. At least if they know you’re not coming they can see the next person sooner. Plus you can always say you’re feeling under the weather. The NHS spend a load of money on missed appointments so always try to make it. I don’t often cancel nowadays but if you still have very frequent appointments life can just get in the way, and they understand that.
So, that’s how I get the most out of an NHS appointment. I’ve stopped getting frustrated with the system, and started adapting to it. If the wait for a clinic is 6 months, that’s just how it is. You just need to make the appointment and do all you can to get the most out of it once it finally comes around. There’s always the chance that someone else will cancel and you can take their slot.
If you keep getting letters through telling you your appointment has been changed to a much later date and you feel like you really do need it to be sooner, you can usually make a GP appt. and explain this to them, and they can send another ‘urgent’ referral to hopefully get you a sooner appt. You’ve just got to know how the system works in order to make it work for you! (Or learn from my knowledge lolol I really have put those hours in)
Hope this helps!