Those of us with chronic illnesses or symptoms that are not yet diagnosed know how hard it is to find a healthcare professional (or even a family member, friend or colleague) who will take you seriously. We’ll have often gone through a string of doctors just trying to find the one that will listen and care, and unfortunately it is a common theme.
For example, Endometriosis takes on average 7-7.5 years to be diagnosed in the UK, and whilst this is due to a number of reasons, one of the biggest is the simple lack of understanding and knowledge surrounding the disease and it’s symptoms.
And it doesn’t always stop when you have a diagnosis. I’ve met consultants, GPs and nurses who have all said the craziest things about my illnesses, made me doubt myself and even question what I have been told by my specialists. I had one urologist tell me that Endometriosis did not and could not effect the bladder (which was funny considering my first surgery revealed a large and deep section of Endo that was infiltrating my bladder…). I had a GP tell me that I didn’t even have Endometriosis (despite me reading my latest operation note to them…) and whilst receiving a bladder instillation, a nurse told me that if I’d just relax my pelvic floor I would be cured (seriously?).
These types of experiences – and I know I am not the only one – make you feel a bit abandoned by the healthcare industry and that you really can’t trust anyone. It doesn’t matter if they’ve done several years of medical school or years training in a specific department of the hospital, not everyone you come across is equally as educated or knowledgeable. It also can make some feel really hesitant to seek help in the future or question what their body was telling them.
Personally, since finding my amazing specialist gynaecologist, registering at a brilliant GP practice and being able to see one of the top urologists in the country, I haven’t found myself trying to have my illnesses and symptoms taken seriously by someone (which is incredible and something that hasn’t happened in a long time!).
However, since becoming pregnant, it’s been a bit of a different story. Mainly centering around my Endometriosis, I’ve had some really naff comments and treatments when experiencing some worrying things. This is my mine and my husbands first pregnancy, one that has been a longtime coming and very much wanted, so (like a lot of first time mothers) things probably make us more anxious or be more careful, but that shouldn’t mean we are made to feel like we are wasting peoples time.
My first experience of this was when I was rushed to the local maternity hospital at around 5/6 weeks pregnant when it was thought I was suffering from an ectopic pregnancy. I’d been forced to stay the night and promised the most senior consultant would review me the following day, just because I was more complicated that their usual patients, but ended up seeing a junior doctor who was so dismissive and said things completely opposite to the previous ward doctor we’d seen (who was just so lovely) yet when we questioned them, we never really got an answer. We felt like we were very much hurried out of the door as soon as I woke up.
The second experience was by some of the nursing staff at the hospital when I had to go back for early scans. I was repeatedly told that my Endometriosis was now “gone” that I was pregnant, so the pain I was experiencing was not that and therefore not as bad as it sounded. We felt a bit lost as we kept getting very different advice regarding medication, and people were quite shocked as to the amount of pain relief I was on.
The third experience (yes, it carries on!) was when I was admitted as an emergency a couple of nights ago due to a sudden bleed and intense pain. Unfortunately I had to go via A&E and came across a triage nurse who really did not understand and insisted that it couldn’t be my Endometriosis, despite me explaining all my obstetrician had advised. When we eventually got admitted to the ward, we saw a junior doctor was was clearly shattered from the busy night shift it was and they didn’t listen at all – kept telling me that I hadn’t had a sudden gush of blood (I really REALLY had) and that it had all just accumulated in my knickers throughout the day (?). They didn’t even want to assess if the baby was ok until their senior colleague told them they had to. We were sent home feeling a stupid for wasting their time.
The fourth and (hopefully) final experience was that of a couple of days ago. Again, I was rushed into the hospital because the pain had gotten so bad I was stuck on all 4’s. When we got there, the ward doctor (who was the same one we saw from the first experience…) was less than interested. Despite me advising them that I was under the specialist obstetrician and that they’d told me how important it was for me to be seen when the pain was like this, the doctor didn’t have a clue. They had no interest in giving me anything stronger, no interest in believing what I was telling them (at one point they told me I wasn’t in that much pain as I was managing to have a conversation with them!) and sent me home as soon as possible with no answers or pain management.
Thankfully, when I reach 20 weeks (which is only a few days away!) my care is transferred to the Delivery Suite section of the hospital, rather than the grey area I’m currently in which is a cross between gynaecology and maternity, and I have been assured that they are much better. So I feel hopeful that if I needed anything, I could get help easier and quicker than I have done previously.
So how do you get healthcare professionals (or anyone, for that matter) to take you seriously? Here are my top tips…
- If you have any documentation (e.g. consultant letters, scan results) take them with you. This way you won’t have to remember everything, but they’ll have the cold hard proof in front of them and will be able to interpret them easier
- Write down everything before you go to the appointment – it will help give your consultation structure and ensure you don’t miss anything
- Make sure you have a list of questions you want to ask them, especially if you are concerned about not getting the advice you want!
- If a healthcare professional won’t do a particular test, scan or investigation, then you have every right to ask them to document it. Why is this important? Because it will show that you’ve been trying to seek help but it hasn’t been facilitated (you’ll probably also find how swift people act when you ask them to write it!)
- Ask for a second opinion. In the UK, every NHS patient has the right to seek a second opinion, switch hospital or even switch hospital waiting lists if you are unsatisfied with the care you have received.
- Remember that it is important to raise a concern or complaint where needed – this will help the service improve and prevent others from experiencing similar
- Don’t be afraid to stand your ground, especially if you are faced with a healthcare professional who really isn’t interested. Sometimes you have to shout and scream to get where you want.
- Educate them. Yes, they are healthcare professionals who should be aware of most health conditions, but if they seriously don’t have a clue, you can always point them in the right direction (e.g. Endometriosis UK)
- Take someone with you to your appointments. Not only will this make you feel more confident, it’ll give you a witness in case you are unhappy about something and (if they are the appropriate person) they’ll be able to fight for you. And if you have no one available, all NHS services offer patients the right to a chaperone.
- You gotta keep persevering. I know it’s exhausting, but it will pay off in the end. Just come out of a dissatisfying appointment? Go and book another one with someone else before you leave.