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Opting out

Firstly I have relapsing remitting MS which leaves me with relatively minor problems. Over the years I have learnt to live with MS and I’m lucky that to the casual observer my symptoms aren’t noticeable [never sure if lucky is the right word but lets just say it’s not as bad as it might be].

I had my first MS symptoms when I was 10 and have been in and out of hospitals and GP’s surgeries fairly regularly ever since - that’s over 30 years. Like many people on here I’ve had good, bad and indifferent service. I used to think it was the postcode lottery but now I think it’s more down to people and how a large organisations like the NHS works.

These past 18 months I have had cause to call on NHS services more than I would like and was initially thankful that such a service exists in the UK, however I have chosen to opt out.

I’m tired to having to explain how MS impacts on me, tired of the endless battery of tests, tired of the scans, tired of waiting for results, tired of having to make appointments a year in advance to speak to my consultant, tired of being offered new drugs “to try”, tired of the side effects, and tired of setting off in hope only to return in despair. Mostly though I am tired of sitting in those dreary waiting rooms for hours on end, feeling the life being sucked out of me, just for the opportunity to sit for 5 minutes in front of the latest Wizard of Oz.

So despite “needing to make an appointment to get the results of my last tests”, having my rearranged Consultant’s appointment from this month set for October 2016, and having a knee that gives way with alarming frequency, I have decided to say goodbye to the NHS and healthcare providers in general (I couldn’t afford private healthcare anyway).

I’ve come to realise that I waste too much time worrying about tests, results, appointments etc. Besides the amount I’ve paid to NHS car parks probably pays for a small village hospital or my consultant’s golf club membership . So I’m saying goodbye to the worry and the drab and dreary NHS, to the blank faces of medical professionals, to the shoulder shrugs, to the chemical experiments, to the endless repetitiveness of my own voice telling the same dull boring story about my symptoms.

I realise that nothing makes me feel me more negative about my MS and me than talking to medical professionals, so I’m cutting that part out of my life. From now on I’m just going to concentrate on the positives. Life, especially when you have MS, is way to short to waste time, energy and effort on the negatives.

Now I know I am lucky that I am not hugely reliant on NHS support and therefore in a position to make this choice, but think about it this way. Me opting out means, hopefully, better service and more resources to those who need them, or at least you won’t have to put up with my miserable face when you’re next in your GP’s or hospital’s waiting room.

So think of it as my one man protest against the dreary and negative medical system (like many one men protests I have no doubt will go unheard and ignored). Yes it is utter nonsense. Yes it is a preposterous. Yes there will be downs as well as ups. Yes it won’t make a blind bit of difference to you or to the medical profession.

But for me it’s about taking back control, it’s about owning my MS and being positive about life. I just no longer feel I can have any of that inside the current system - so this is me getting out, opting out.

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You have given me food for thought. Good luck with this new chapter. Mick

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Hiya

I can understand your reasons totally!

I suppose I have done half ditching! My gp knows my feelings re NHS appts. I had huge life changing attack over 3 years ago and after making myself very clear about how I didn’t have energy and time to waste then I only attend essential appts. Define essential?! Essential in my opinion! And it works for all involved in my care-so far!

Ellie

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Well, your post was certainly worth reading…and yes, I understand from first hand experience what it`s like to be poked, prodded, tested over and over again and to sit for hours on end in waiting rooms.

BUT…the NHS is all we`ve got…unless we can afford private healthcare…but even if we did, would that enhance our condition? I think not, having gone private in the first place, only to still have a huge ? mark on my head, some 17 years down the line.

I still wear that now, after seeing 16 different neuros in as many years.

The NHS workers on the ground floor are mostly empathetic to us, but cannot do more.

Do you mean you are giving up just the MS/NHS part of your life? I hope yor answer is no.

If not, what happens if you have a road accident, or a heart attack?

There may be no cure for your MS now, nor one for my HSP/? But I think we ought to stay with our neuro appointments, because there may be something which could hep us sometime down the line.

Plus, as you say, your present symptoms are manageable…but what if they worsen and there IS already something which will alleviate things?

Of course, you are very much entitled to go with however you think, but I do hope you`re not going to regret your actions.

But you an always return…I doubt the NHS would refuse to treat you.

luv Pollxx

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I’m giving up on healthcare in general not just the MS treatment part. Will I regret it? Probably but I’m okay with the decision.

I’ve decided to take back responsibility for myself and stop worrying about the consequences, the maybes and the what ifs - I’ve done that for far too long and it’s both tiring and very negative.

So I guess it’s about control and doing things on my terms again rather than a tirade against the NHS or any other healthcare provider.

Granted it may not be for everyone, I know I’m lucky in being able to make this choice, but it feels right for me.

I’ll let you know how it goes.

John

Thanks Mick.

John

Hi Ellie,

It seems a very sensible approach. It’s definitely more about taking control back rather than a rant at the NHS (although…lol).

I hope you’re well and in a good place.

John

john

u r right about the control matter. however i also had to be realistic-i need carers and needed to be in the system to access that sort of help. hence why i replied as i did.

take care, ellie

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I’m right there with you! In no way am I as badly affected as you so far, but same reasoning exactly.

Although I don’t need assistance to get to appointments, it is a big stress and a faff, as I don’t drive. If it’s just for “a chat and a cup of coffee”, as was once memorably suggested, then no, I don’t want or need to go all the way to hospital just for that!

If there’s a significant change in my condition, or there are important decisions to be made, that’s quite different, but I don’t want to spend a load of time at the doctor’s or hospital just for routine chit-chat, and them to say: “OK, you’re doing fine, and we won’t tweak anything.”

I think it’s fine to accept as much or as little NHS intervention as you want.

I wouldn’t turn my back on it completely, just in case something “essential” crops up (like you, MY decision what’s “essential”).

But I don’t want to be up there all the time, just chewing the cud, and coming home thinking: “Well, that was a waste of time and effort!”

It’s not just my time wasted - it’s theirs too, if it could have gone to a patient who was desperate to see someone.

Tina

x

good for you John, after my diagnosis i didnt go back to see a neuro for many years,my gp wanted me ‘back in the system’ so i went to see one a few years ago,i go once a year to have a ‘chat’ with either the ms nurse or the neuro,i feel as though its a waste of my time and theres,and said i wasnt going to bother again,i am not very well at all with my ms either, its not like i dont need support,as i do,just not the type thats been offerd, so i cope with it in my own way, i know the ms nurse thinks i am awkward because i dont fit in with the system but i never took to her really anyway, i am my own expert in my own ms,i have lived with it 23 years now.

J x

good luck to you and everyone else who decides to go your own way.

pollxx