I got inspired to write this post after spending this week feeling completely stuck with my health, specifically my Endometriosis and Adenomyosis. I was suffering with excruciating pain and it was limiting my ability to get comfortable, walk and function. However, after failing to get a positive outcome from a GP appointment, I was left questioning who it is and where it is we are supposed to go when our first point of contact does not want to help us.
Because both Endometriosis and Adenomyosis are chronic, incurable health conditions (please feel free to read more about Endometriosis in my blog post – a similar article on Adenomyosis will be published in the next week or so), it has taken some time for this to sink in. However, sometimes during a flare or when one or both diseases limit what I can do, my emotions flick back to feeling overwhelmed, scared and alone.
And this happened just this week. On Wednesday night when my pain was starting to get really bad, I was struggling with knowing what I should do and who I should turn to. I contemplated going to A&E because it was that acute, but after deciding that this wasn’t the best place for me, we then thought about NHS 111 and the Out of Hours service. Again, we decided that this wasn’t the best place either – it was probably better that a GP who knew me dealt with me. And that’s how we settled on phoning the GP surgery the next morning.
Unfortunately, as I mentioned in my earlier article (I Feel Like I’ve Wasted Their Time), the appointment didn’t go as well as I’d have hoped and I was sent away with very little help and no answer to the acute pain I was experiencing.
So where is it we are supposed to go, and who is it we are supposed to turn to when there is no other help available?
Your GP is your primary care provider – the first point of contact for any problems you have, but why is it that the common theme when dealing with patients with chronic illnesses seems to be dismissal or disbelief or invalidation? These upsetting appointments often lead to use feeling like we can’t trust our GPs, and we end up avoiding them at all costs, perhaps preferring to seek help in A&E or walk-in centres instead.
However, these are not always where we find help. For example, I have personally experienced a lot of discrimination in A&E – I have even been asked out right why I thought it was appropriate to attend A&E, despite the fact they had a referral from my GP, and told that “A&E don’t deal with things like this”. I have also heard many other horrible stories from people in the chronic illness community – when they are in desperate need of help because they are acutely unwell, or too poorly to function, or perhaps have called an ambulance because they have nothing else they can do, why is it that we are often turned away or not treated fairly? Just because our diseases are incurable or invisible to the naked eye does not mean we deserve to be treated like this.
Our consultants are not always easy to get hold of either – it is highly unlikely that we can make an appointment with them at a drop of a hat, and it seems the only person who can talk to in relation to them is their secretary (and they aren’t always pleasant either). Despite “urgent” referrals, there are often weeks of waiting for first appointments and even longer for treatments or surgeries. And in those weeks of waiting, what do they expect us to do?
The reality is, is that there really is no one else we can turn to. Other than support and love from family, friends and the chronic illness community, if no healthcare professional will take you seriously, then it really feels like we are on our own. Frustration and despair and can turn into anger as we take it out on those close on us – but who can blame us when we aren’t getting anywhere.
Now, I’ve come up with some “answers” to these questions.
Who are we supposed to turn to? Ideally, for medical matters it should be some form of healthcare professional – GP practice, walk-in centre, urgent care (or out of hours) or A&E. However, when these are options that are not appropriate or not available, then I would 100 percent encourage you to turn to your family, friends and us in the chronic illness community for an endless supply of love and support. Just having someone to talk to can make you feel instantly better, and you can maybe find ways to get by until the right person or appointment becomes available.
Where are we supposed to go? You could argue that this is is pretty much the same questions, but I think you can look at it in a different way;
- GP practice – non-emergency and non-life-threatening medical things, typically common illness and minor injuries. The NHS describes GP’s as healthcare professionals who “look after the person as a whole, both their physical, psychological and social aspects” and look after people “with chronic illnesses” (now honestly, who has really had that from a GP?)
- Walk-in centres – also known as Minor Injury Units, this is a service that you can (as the name suggests) walk into and be seen. It is often for minor injuries or illness and is great for people who may not be in the area their GP practice is. Some provide other services such as xrays and blood tests if needed
- Urgent care – there is a bit of a crossover with urgent care and walk-in centres, as some offer care for more urgent matters. Urgent care centres are typically appointment only (e.g. referred via NHS 111) but some do offer walk-in appointments. They are the kind of place to go if your medical problem is too urgent for your GP but not urgent enough for A&E
- Specialist nurses – this might be a unique service for some areas and departments, but if you are under a consultant for a particular problem, you might find they have a specialist nursing team you can contact if needed.
- Accident and Emergency (A&E) – as the name suggests, this is a healthcare facility for people who have had serious accidents and emergencies, life-threatening problems and very urgent medical matters. There is no appointment system, and patients are bought in via ambulance (through calling 999) or just walking in. Most A&E places now run like triage centres – they’ll see you for an assessment of what the problem is and then send you to the right place for treatment. Unfortunately, they are under no contract to admit people they don’t think requires it
That said, there is a lot of blurred lines between each of these services for those of us with chronic illnesses, particularly if you’re medical condition is one that has serious complications or flares that lead to worrying things. The most common factor for seeking medical attention I have found is pain, especially those of us with Endometriosis. You are in no way wrong for going to A&E when your pain is undeniably bad, but not all healthcare professionals see it this way.
But what if you’ve been turned away from a service or had an appointment that was not good? Well, if it is appropriate you can seek help at one of the places listed above. But if it’s not, or you’re having to wait for an appointment, you can always speak to NHS 111 or refer to the NHS Choices website for further advice.
I know it can be incredibly frustrating and upsetting when you feel like you are stuck in a rut. On Wednesday night, I was in tears because nothing was working and I couldn’t go anywhere to get help. And after my appointment on Friday, I felt no better. But I realised that in these situations, the best form of support I have to get me through is my husband and reaching out to others. And where this is possible, I’d encourage anyone in a similar situation to do the same.