Take control

I have seen quite a few posts on this forum where people are asking about follow-up appointments or saying they have been left high and dry or variants thereof.

This has always puzzled me a little as I can’t help wondering why it is expected for the doctor or hospital to follow-up.

I thought I would try an analogy. I’ll use myself as an example, but I expect I am not the only one who drove an old car. In fact, I am not sure why I am saying old car, it could be any car since we all know, do we not that a car, any car will break down or require repairs at some time during its lifetime.

In my time I have had eight cars. A couple of these were brand new with only delivery mileage. The thing is in all the time I had these cars, no garage or the dealership that sold me the car ever asked me to take the car in for service. It was always up to me to make sure the car was serviced on time and if I missed the service I had to accept the consequences. It didn’t matter whether it was under warranty or post warranty, I booked the service or it didn’t happen.

My car mechanic never called me or asked me to take my car in. He may have said come back in six months or a year, or the service manual may have suggested an interval, but that was it. Also, even when it had been serviced, I was usually the one ringing up to find out if it was ready!

For me, my health is no different. What I have seen is that in the case of strokes, once the hospital declares you medically fit, you are discharged and there are on occasions ongoing care instructions to the GP or district nurses etc. But, I personally have never seen any “follow-on” or “routine” checks and so if I have had any follow-on appointments it’s because they were initiated by me or I broke down and ended up being taken to A&E.

Do I expect the healthcare profession to make appointments for me? No, I don’t.
If I am lucky they might send a reminder to make an appointment for something I don’t need or want e.g.a flu jab or a diabetic test, but nothing else. OK, that’s not strictly true. I do get invited to send a stool sample every two years so they can check if I have bowel cancer.

I am not sure if it is just me, but I find if I need something checking or doing, I invariably have to initiate it.

The most recent example of this is a “follow-on” check for my Mum.
Again, they discharged Mum in December and put her on life long meds.
Sorry, we don’t want that so after 8 weeks (end of first course of meds), we checked with the GP and they were blissfully unaware or concerned. They were happy to prescribe more meds but nothing about if they were working, if there were side effects etc.

So we said we want to stop them for x, y, z reasons.

This resulted in a “high-priority” referral back to the hospital.

I am not suggesting this is the way to do things, but it’s how I/we do it. Does it aways get results? No - as you might just join a queue and again get forgotten. So we do a follow-up to the follow-up.

As at the time of writing we are still waiting for the appointment …

Namaste|
:pray:

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Well let me say this ManjiB. 1st point car. Our car is a 74 plate. When it was time for its first service a notice came on the screen saying service required in 500 miles or words to that. We then got a call from the garage to say it needs booking in. So follow up on some cars does happen. Funny how they new though. :joy:

Has for follow up appointments after I was discharged the consultant said you will get a letter in 6 months if date not ok ring the number on letter and re book the appointment. But please book it.

Each time I’ve seen my Dr since the stroke he / she has asked how I’m doing. Even the check up on my asthma after checking it out. Took time to ask how I was and how was I coping .

So I do think like lots have said before. The system works differently in all areas. Thankfully here were I live the systems great. Well it has been for me

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I get what you are saying we do need to take matters into account our own hands sometimes.

However, as a stroke survivor you are constantly on high alert and the worry and fear especially in the early weeks and months is excruciating. When you are told we can’t find an answer or you will have a scan in x amount of weeks and then hear nothing but are constantly checking your NHS app, waiting day on day for the post to arrive it heightens everything. This makes the anxiety worse and in turn heightens physical symptoms too I have learnt.

Medical professionals are so busy and do not have time to follow up with patients once they have been discharged. This is just how it is. Their focus is then on the other patients in their immediate care. There should be some kind of in between service. Yes you get given contact numbers for the stroke team, PALs, stroke association, DVLA etc etc but you have to reach out to them and at that stage you feel like such a burden and do not want to bother people. Or perhaps that is just my own experience.

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@ManjiB While I take on board all you have said and I do agree with you. I am now going to speak as a stroke survivor. in the past when I had operation or anything carried out by hospital, i have always had a follow up appointment. But not stroke i have just been left, so maybe a lot or survivors are thinking like me, however i do take on board what you are saying and we are responsible for ourselves. stroke survivors have had life changing experience and maybe its easier for you to think for your mum as you as a carer than us survivors thinking for ourselves. Have s great day :folded_hands:

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Agree with MrsG16,
I think most know ive been a carer and now of course had strokes. Just an observation: while you personally do have to initiate things ((in most cases), when you are unwell (and recovering) you are not in a fit state to do this let alone battle for your needs.
And in addition to physical health there is mental health to consider as a consequence and both affect the other while a cure for one may not alleviate both (but im not an expert).
So having a good carer (like family member(s)) is a massive advantage and can aid in or take the lead, but for some this is not available.
So while I believe in being responsible for yourself , this is not always possible. Thank goodness for communities like this one - good on the association for facilitating this - i do believe it’s the members-all of us - who make it tho.
I hope that reads ok and ive not misinterpreted anything - have a great day everyone :+1:

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Iv’e now had five Basal Ganglia strokes. My consultant this time has done a battery of tests to try to find out the cause. I am allergic to the clot busting drug they use when taken to hospital so if I have another stroke the only option for me is a Thrombectomy, which is what the consultant told my daughter. I see my consultant in a few days and I have to say, these last two strokes are the only time I feel I haven’t been ignored or forgotten about by consultants, but that is because it is a different healthcare team. As for my GP, I never see him. The Clinical Pharmacist in the practice sees me once a year to discuss my medication and my blood results taken a week previous. I have the number of the Stroke Team, who have been brilliant and have just discharged me from their books, so I can call them if I need any help with anything. They had come to my house to assess my needs and they got me items to make my life easier.

I do think it is a lottery as to the aftercare you get.

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@Lollipop68 100% lottery. Its nice for me to read that some people have had very good care. maybe its my fault the way I am treated as I am straight to the point, you know when i have entered the room and I question everything. Maybe the future holds something better for me. Have a great day :revolving_hearts:

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I cannot see any connection between a car and a human being.

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Steering wheel and pedals, ideally.

(Sorry, couldn’t resist :slightly_smiling_face:)

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I accept that we are each responsible for ourselves in life but there are times post stroke I was struggling with me, I’m good with all aspects of dealing with others needs but calibrating my own was a struggle.

This was made difficult as my care is in two health boards who are neighbours. The ambulance that arrived took me out of area as it were. Communication between the two is non-existent at best. My community nurse only got the referral 10 weeks post stroke and was very mediocre at best. also could not contact her as the team has no incoming calls so could not. I agree with trying to take control and be responsible but communication is key in this area.

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As always there is a mixed bag of experiences and views.

We all think like we do and believe what we do.
Some will listen to others, think and learn and then choose.
Others will rubbish it and say “what does/he she know? I am living it, they’re not etc. etc.”
Some will have had the “good fortune” to receive excellent service and support and might be wondering what the fuss is about.
Others will have had the worst and see no sign of improvements, will be despairing and not knowing where to turn.

When I say take control, I mean it.
If you don’t no one else will (unless of course you have guardian angels, and clearly there are some on this forum who do and I say good luck to them :slight_smile: )

I didn’t get where I am today by …
… I was pushed :sweat_smile:

Best wishes to you, thank you for reading.

:pray:

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Hello Jean - I am guessing this is bit of the ironic British humour (if indeed you are British).

If not, my apologies. I used the car as an analogy to try and explain how/why we must take control of our lives. If this hasn’t worked because you see no connection between a car and a human, then in future I must try harder to find a more meaningful analogy.

Wishing you all the best.

:pray:

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I wonder if this might be because you are offering them a chance to see something they haven’t seen before. You being allergic to the clot busting drug is offering them a new challenge, an opportunity to learn something new.

It is sometimes the case that if something new or challenging is offered or becomes available you feel inclined to take a greater interest, whereas if something is routine, it maybe becomes less interesting?

This of course is in addition to this whole thing being a lottery.

I hope your consultant has some good news for you when you see him/her next day.

Take care.
:pray:

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