Warning.....rant on way

Primary progressive MS
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Hi everyone

Firstly my apologies if I waffle on.

Some of you may remember my GP tests had shown inflammatory arthritis as well as ms, and he convinced me to see a rheumatologist asap. Well, the appointment was Tuesday 9.00 at Cheltenham hospital, which is a 30 minute drive from where we live. As it was a busy time of day we thought we would leave home at 7.30 and get over there and have a coffee before I get called.

We get to 5/6 minutes away from hospital before 8.30 and the road approx half a mile long took 45 minutes to get out of, getting us to hospital at 9.02. The road to hospital main car park is closed for work, so we quickly park up in the last space of overflow car park, rush into hospital, grab lift up to top floor, eventually arrive at reception for 9.15, apologise profusely, and told not to worry.

Nurse calls me in, explains that the second person on the list has taken my place, so we would take theirs, no problem. She tries to take my blood pressure, but the machine would not record , as it was too high. Told to sit in waiting room, and 55 minutes later she came out and told us the consultant has said she will not see me now as I had missed my appointment, and to go home.

I was in floods of tears, hubby asked why we could not take the appointment of the person who took mine, but no reason was given. I tried to explain to the nurse how stressed I had been over this appointment, and had Syked myself up for another Mri, which I hate, but all to no avail.

When we got home I did my blood pressure it was 218/98 I felt dreadful, consequently was in bed all day yesterday with awful neuro pain, hug, and dizziness, and today is only slightly better.

The annoying. Point here is from 8.20 until 9.02 I was constantly ringing the department to let them know we were within sight of the hospital, but no one answered the damm phone.

These (so called) caring professionals didn’t have a caring bone in their body on Tuesday.

if you manage to get through this, thank you, I am not worried about any replies to this, just hoping by putting it down will be cathartic.

Pam x

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Oh chuffin ell Pam! This is terrible and enough to push anyone’s blood pressure through the roof!

And how many times have we sat in the waiting room way beyond our appointment times, when THEY are running late! I’ve waited up to 4 hours! And you were only 15 minutes late…it’s just pathetically unfair…damned unfair!!!

Pollx

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I live about 30 minutes from Cheletenham and refuse to take any appointments that early. The trouble is you hit all the work traffic its a NIGHTMARE. I am supposed to visit the pain clinic gloucester royal, at 9.20, i have asked them to change the appointment until 11am on another day.

ALSO i have been to an appointment on time, and had to wait THREE hours for the neuro to arrive in GRH, it makes me mad.

The rheumy in our area are hopeless to be honest. I do understand how you got wound up too, my first neuro appointment i went private at Winfield Hospital my BP was 215/115, the neuro was very worried, but i told him it was just white coat syndrome. I am on BP tablets now though.

Can you go private its so better for the first appointment. Sending you big hugs. xx

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Hi Poll

Thanks for your kind words, means a lot. This was all so unnecessary, surely common sense should h

ave come into play, the second person on the list took my place, and so I take their spot! Hey ho

Hope you are ok.

Pam x

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Hi CC

Thanks for replying, it really helps knowing people understand, Cheltenham hospital obviously doesn’t. At the moment I don’t really want another appointment there, agree with you about Gloucester Royal, locally we have little choice, so I will give your suggestion some thought.

I already take two different meds for high blood pressure, I presume it was just the stress on Tuesday that caused it to rocket up, normally with the meds it’s round about 145/70 which the GP says is still too high.

Hope you are ok.

Pam x

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Pam, the state of a lot of hospitals is appalling.

Everyone seems to be stretched in this archaic incompetent lumbering entity that is the NHS. We have a new building close by but the parking is inadequate and impossible for me to go there alone. Inside the long corridors are punctuated by heavy double doors. Again there is no way I can get through them.

In amongst all this chaos are some wonderful people. But what happened to you was inexcusable. I would have been complaining bitterly along every available channel. But that’s me. I can understand if you want to just put it behind you. Insisting on later appointments might mean it dominates your day a lot more and there will be longer to sit around in the sterile environment of the waiting room ut it might mean you will have your consultation.

As for MRIs. I’ve had three of them. They are thoroughly unpleasant experiences.

Hope you will feel better soon.

Best wishes, Steve x

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Hi Steve

Thanks, your words are reassuring, I begin to wonder if it was just hubby and me thinking it was diabolical, but knew deep down that friends on this forum truly understand how stress ramps up ms symptoms…

I find it very sad that over the years ms has robbed me of the person who dealt with any problem or stress head on, and left me with a blubbering mess who cannot cope at all, it really is a despicable illness.

My hubby has since complained to PALS about our treatment…or should I say lack of!

Take care

Pam x

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Glad you’ve complained as I was going to tell you that you should.

When you checked in for that appointment albeit 15 mns late, you should have been told not to wait. if your appointment was to be cancelled. If you weren’t told immediately, common sense says you should have been told as soon as the Dr. was free of his current patient, surely! By letting you wait, the receptionist was taking responsibility for the time you waited, when it was unreasonable to expect you to be waiting. It’s very unfair when we wait ridiculous amount of time, and frequently - yet it’s ok for them to cancel on you and add insult to injury by letting sit and wait for that time to before being told.

Sonia x

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Hi Sonia

Thanks I am glad that it’s not just me not understanding why common sense didn’t prevail, my sentiments exactly, why make me wait 55 minutes to say go home, they could have made that decision immediately.

The lady at PALS told my husband that lots of people , patients and staff working at thee hospital were late arriving that day, in fact she was over an hour late, so with that in mind, we done quite well.

our treatment was so uncalled for.

Hope your ok.

Pam x

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Pam, ive just read your message and ths makes me feel so cross, no wonder your blood pressure was up, i think its awful how you have been treated. I’m glad that your husband complained.

Michelle x

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I’m Ok thanks Pam, feeling better than yesterday, restarting some of my old meds and feeling some benefit from them too so happier by the day at the moment.

I started taking pills for my BP 3 weeks ago and my BP has continued to improve over last 4 BP checks (yes, seriously have had it checked that many times in one week!). I’m so relieved, my BP was always a bit on the low side so I really freaked when they suggested I should go see my Dr as it was too high. I hope your BP isn’t aggravated by the stress.

Sonia x

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Hi Michelle

Thanks for your kind words of encouragement, it’s surprising how helpful it is to write it down and get it off your chest, especially when you know the people reading it will understand.

It really upset me at the time, but now I am angry with them, and glad Phil complained.

Fab news about your chair, there will be no stopping you and Fraser now.

Pam x

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Glad you are feeling a tad better Sonia, hopefully day by day you will notice an improvement.

I have had high BP for a long time now, follow my Dad his was always high, been on 2 types of meds for 5/6 years, but the slightest thing and up it goes, I don’t seem to be able to have any control over it.

I always look at your avatar and think, if ms hadn’t messed me up, I’d have had a crack swinging round the pole, but I don’t think it would have been a very pretty sight! lol

Take care

Pam x

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Sonia Feel like I have a headache coming on after reading yr blog! Disgusting treatment. Glad Phil complained. I agree with everything said. I have had maybe 5/6 mri. I don’t like them but I have managed to fall asleep during one!! I imagine I am talking with my dear Dad. Yr post rings a bell. I have arthritis in my spine but now it seems to be all over me. At times the pain is excruciating. My heart goes out to you. Let us know how you get on. Sending hugs Anne x

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Don’t put yourself down Pam, I had two ladies in their mid/late 50’s, they were my fave students, we used to have the most fun and giggles and work out the sexiest routines as neither was able to do the really athletic stuff - so we were imaginative - even stealing moves/steps from Strictly so we things to play with each week. A lot of women agree that it’s very empowering. I think the right knowledge can give you so much confidence and it is amazing fun. I miss it so much. Luckily there’s stuff on youtube/facebook so I get to see what my girls are learning etc.

Sonia x

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Oh no, which blog entry gave you a headache? x

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I know its mad but if you go private at least you get dealt with better and seen quicker. When i went for my first neuro appointment on NHS i HAD TO WAIT THREE MONTHS, going private i saw the same doctor at Winfield and wait for it, the appointment took TWO DAYS LOL…

Even then he has been late on occasions.

The trouble too if these specialists are late, it doesnt allow you to take the person who took your place, it just means it puts the appointments back on time and target. The worse thing is they are often late as there are simply not enough specialists and still have to do rounds in hospitals, etc.

Have you tried a garlic capsule every day for your BP? I take one alongside my tablet, and mine now is normal actually can run a little low.

Also yes stress makes me feel awful and my BP does rise. I try to live stress free lol yeh i know asking for the impossible, but the one thing that does stress me always is appointments. Just going to them stresses me and puts my BP up.

I hope you get sorted soon. My husband has an appointment at same clinic next week i will warn him about the traffic delays.

xxxx

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Hi Pam you wrote:

I find it very sad that over the years ms has robbed me of the person who dealt with any problem or stress head on, and left me with a blubbering mess who cannot cope at all, it really is a despicable illness.

Exactly.

I said to my therapist yesterday i used to be a really strong women, never bothered me much and i loved challenges. I got made redundant and went back to college and did a teaching qualification well two actually. I taught myself all the new microsoft products at the time and took every I.T. exam to better myself as when i started we had Word Processors lol…

I got a job in a big college in my area as an I.T. tutor and then got head hunted by a community college in the city, and i ran 11 satellite centres, was in charge of 54 tutors, put in a curriculum for I.T. qualifications, passed every audit each year with 100 percent. I LOVED my job so much did it very well for eight years, then was hit with the weirdness…which finally turned into MS, which slowly fried my brain and turned me into a gibbering idiot lol.

Now i cry at nothing, cant remember what i am doing, live in a perpetual brain fog, and just typing this i have to read it over and over for mistakes before i hit POST lol.

Stress dont even go there. The stupidest things make me stressed, like not being able to open my weekly pill thing because the little lids are too tight, and when i finally get the days open the lot fly’s all over the place lol…like looking at something simple instructions, and thinking well what the hell is all that about, and pass it over to hubby to do.

Yeh stress UGH. So when you are messed about at an appointment which shouldn’t happen, your BP goes up the charts. Appointments shouldnt be difficult.

Who decides about them anyway. I mean knowing someone is disabled with MS they decide for example to give me an appointment in the City at 9.20am… seriously your aving a larf lol. Parking takes 30 minutes i would have to leave at 8am lol just trying to get through busy work city traffic is a nightmare try and get a lift at that time.

No one thinks anymore about the affects all this has on the people who are suffering these life changing diseases.

So dont beat yourself up we are alike all of us, sisters and brothers we understand, its just sad the rest of the world are plainly ignorant.

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Sorry not blog! This post. Got me terminology a bit confused !! Anne x

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Hi CC

Thanks for this I don’t take garlic tablets, but will definitely look into that, anything that helps will be a bonus. I have for a while now had anxiety, which makes it worse, but like you, I hate appointments with a passion.

Yes, mention to your husband, I am not sure of the name of the road, but it’s the one that has Delancey hospital in, and they have 3 way temporary traffic lights at the end, cones round a small hole, no one was working there! That road took us 45 minutes to get out of, and College road was closed due to resurfacing, so presumably that should now be open.

I will give the private option some thought, but after this weeks performance, at the moment, I don’t even want an appointment anywhere.

Pam x

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