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Three tips to help navigate the NHS and Healthcare when you have suffered a brain injury

I am truly grateful for the support I received from the emergency services and the team who looked after me when I was an in-patient at The Royal London Hospital following my car accident. I’m sure I’ll never understand the amount of complex support I received from them.

However, it was different once I was sent home as an out-patient. At this stage, no one had even explained to me or my partner James that I had a brain injury. We assumed it was a concussion which would right itself in a week or two. It wasn’t until two months later at a follow-up appointment that they explained they had discovered a bleed at the base of my brain shortly after I first arrived, but as it stopped bleeding, they didn’t need to take any intervention action.

That was the moment that my extremely slow progress started to make more sense. My expectations of myself were too high. There I was thinking I was doing something wrong, but in fact, I was doing as well as would have been expected for this kind of Traumatic Brain Injury.

Tip 1 – Assume nothing

As part of our British culture, we tend to respect authority to the point that can mean we don’t question anything. We feel confident that important details will be shared with us as necessary, so just accept what we are given. However, no matter how many degrees they have and years of experience, Doctors are only human.

Their workload is usually overflowing, and it’s not always easy to keep track of which family have been informed of each development. Therefore, the best thing to do is ask. If the language they are using is too scientific for you to follow, tell them. The brain is the most complex organ, and therefore, it is not easy to understand. You don’t need to be shy about asking them to try to use understandable terms; they won’t judge you. They know it’s exceptionally difficult and will more likely feel that they should have done a better done at explaining it.

Tip 2 – Take comprehensive notes

During stressful experiences, it can be difficult to think straight and remember details. Therefore, it’s vital that you write down so much as you can. Another thing you can do is use your phone to record the audio of the meeting. However, if you do decide to do this, YOU MUST inform them and ask for their permission.

These days we like to feel empowered by being able to do extra research once we are home. If you have notes to refer to it becomes a lot easier to find articles online that contain the key phrases. You always have to take everything you read with a pinch of salt because your case might not be quite the same. But if you’re anything like me, you’re going to look anyway, so you might as well make it easier on yourself by making sure you know what words to look for.

Also, make sure you file away all your notes and any letters from the hospital. You’re most likely going to want to refer back to these further done the line to make it easy for you to find when you need to.

Tip 3 – Go to your GP as soon as you’re sent home

In today’s superfast world of the internet, we think that employees of an organisation are instantly updated. But when it comes to something as large as the NHS it doesn’t really work like that. So, the best thing to do is talk to your GP and explain any issues you are dealing with that you still need support with. For example, my GP put in a referral for me to see a speech therapist as the hospital hadn’t covered my speech problems at all. And the lady I saw was brilliant.

Often the hospital that treats us in an emergency is in a different health authority than our local GP. So it can be more helpful to have ongoing treatment for specific symptoms in your local area. Thus your GP is well placed to help you with this. Plus, if you keep your GP up to date with your progress, they can make sure you see all the right specialists.

When you or a loved one has sustained a brain injury, shock can take over and you feel like you’re in a daze. The best thing to do is try to make things as simple for yourself as possible, which is why I recommend you focus on these three areas first. The NHS really does want to help you, but its size can make some processes more difficult. At the moment, we need to make sure that we are heard so we can see the right specialists, and your GP is your best friend at this time.

If you follow these tips for every appointment you have, you will be able to better communicate with the NHS what you need. As every brain injury is different, there is no standard format for what happens. Thus you need to be the director of your own destiny.

Disclaimer:

Nothing in this blog should be taken as providing medical advice or recommendations. Please always consult your doctor for medical advice and before taking any medication or supplement. Any opinions expressed in this article are of the author and not CFG Law Limited.

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