Be proactive!

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Waiting. Patience. They’re pretty hard things to do and be when there is only so much influence you have to push a process along. It’s when you’re the one turning the clogs to get even the initial stages completed that your patience is tested.

What am I referring to? The process of being referred to a specialist. The diagnosis part…well, that’s a whole other ball game!

Anyone who has ever been referred anywhere along the system in the NHS will empathise because I am pretty certain for most people, they had to wait longer than necessary.
This isn’t in any way a dig at the NHS, I think on the whole we are very lucky to have this service. No, it’s a venting of my frustration at how just a few wrong moves or errors along the way, mostly through administration errors cause most delays. Well, in my experience, every delay possible. It’s even worse when you’ve personally spoken to several people to tell them what needs to happen, when and to whom because you’ve taken the time to find out, yet it still goes wrong.

When it can go really wrong

My first experience of administration going wrong and learning the hard way that things don’t ‘just happen’ but you need to be proactive was a few years ago. I broke my nose very early in morning. I don’t turn lights on at night, preferring to go by ‘night light’ and familiarity with my surroundings. When I lived with my sister we decided on a really sturdy oak finished fire door to block off the kitchen, through which you needed to walk to access the bathroom (typical Victorian terrace). You can see how this is going to end?! I wrongly assumed the door was open – simply by the ‘light’ or rather shadows which appeared different (in my sleepy haze). WHACK. Straight into it I walked with the momentum I had built up walking pretty quickly through the dining room. I woke my now husband up upstairs. That is how loud it was! Long story short, I went though the system but along the way got lost and by the time I saw an ENT Dr I was on the cusp of the 21 day window to get my nose reset with a quick snap. The consultant I was then referred to basically said surgery would be purely cosmetic so I might have to foot the bill aside from the potential complications that arise through surgery. Hindsight along with conversations with various medical professionals has enlightened me to the fact that if I had been referred to ENT whilst at A&E as I had clearly broken my nose – the sound itself was a clear indication(!) and if my paperwork had not been lost somewhere along the way – I would have seen the ENT specialist within the 21 day window. Actually, I wouldn’t have needed to see my GP to be referred and ultimately not needed referring to the consultant; this would have been cheaper for the NHS all round. 

The current saga

Cue the ongoing saga that is being referred to the CFS/ME specialist. Now I’m sure many of you have had worse experiences than I am about to enlighten you with. Please remember that I am at the start of my journey and as yet do not have or rather, am unaware of any other underlying conditions.

This new saga has been ongoing since early March. I was referred. I had to do some phoning of my own pretty quickly because I couldn’t actually make an appointment on the online NHS booking system for which you get a username and password from your GP surgery. No bother. I discovered that I had been referred to the wrong surgery; not my GP’s fault as he was unaware that the specialist he had in mind, despite doing his own research before sorting the referral, no longer worked there. It’s not like there’s a CFS/ME clinic in every hospital either!

I spoke to the administrator at the correct clinic who had received my referral from the other clinic. Hunky dory. Or so I thought….

Cue 4 weeks later when I ring to get an idea of when I might receive an appointment. Oh. My referral has been returned. When? Two weeks ago. Right. Why? More blood tests.

So why was I not informed of this by my surgery? I ring and get sent the blood test forms. Obviously the blood appointments are booked for another week. Joy. They take up to 10 days for the results to be returned. I speak to my GP to tell him which clinic I need to be referred to. The bloods return and I confirm that I have been referred to the correct clinic. I discover I was referred before the blood tests!! Huh?! The reason for the referral being returned was because they needed the additional blood tests as a condition of deciding if I was to be seen by them….!!

I have a sneaking suspicion I wasn’t referred and my file was misread. After checking up a 3rd time since receiving my blood results, I received another referral letter in the post where I had to log in to make the appointment myself. To the wrong hospital(!!!). Technically I had to collect the letter from the post office depot because whoever sent the letter didn’t put a stamp on it. £2 that cost me. £2 for a useless piece of paper.

I know you don’t need any special qualifications to be a receptionist or administrator; I’ve done both jobs myself. Good communication skills and the ability to complete tasks accurately and efficiently is all you really need. It’s not asking for much. Apparently there are many people who cannot even get that right. And they’re getting paid to do it. And get it wrong.

Anyway I’ve spoken to someone else and fingers crossed I’ve been referred to the correct clinic with the blood tests alongside. Which reminds me; I need to ring to check the letter or whatever happens has been sent. To the correct hospital. Then I can speak to the very helpful and patient lady at the right hospital who knows me by name now!

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