This was On TV the 5th sept: This was on TV last week... - NRAS

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This was On TV the 5th sept

VeronicaF profile image
35 Replies

This was on TV last week,( its the girl at near the end of the program), if she didn't have RA

I will eat my hat. I say that as I could relate to her as you all will when you watch

I so could understand how she was feeling and my heart went out to her

Episode 2 the girl near the end of the program

my5.tv/gps-behind-closed-do...

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VeronicaF profile image
VeronicaF
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35 Replies
Need2knowN profile image
Need2knowN

Will catch up when I get in!

Bookworm55 profile image
Bookworm55

Yes I saw the programme - and thought exactly the same! Poor girl - I remember that feeling - and the despair 😩. I reached the point when I refused to leave the surgery until the gp did something - gave me another blood test and then rang me that evening to say my CRP level had quadrupled in a month. Was seeing the rheumatologist within 10 days.

Hope they sort her out.

juneann profile image
juneann

If you're referring to the girl I watched on the programme I agree with you. I felt every emotion she showed with empathy, I could see and hear how utterly desperate she was and exactly where I have been so many times. The pain, frustration and anger of an RA sufferer should never be underestimated. I have come across people who have a diagnosis but after their first flare are almost unaware for years and years. This young lady clearly was distraught and suffering.

Its at 34 mins .I gave the GP a point for at least looking at and feeling her hand joints. i wondered how many times she had been before that happened, He went into minus points on warmth and empathy. Maybe difficult being televised. i sooo felt for the girl. Did she feel understood/believed/cared for from that encounter? Umm.

Shaffs post re 'I'd like to teach the world to sing' seems poignant. If GPs can't get it.....

I saw a snippet of this on a clip the other day and immediately thought I hope she doesn't have Ra. Just watched the link and you can see she's just so tired of being fobbed off. I didn't feel the gp understood her desperation at all. Maybe he did but unfortunately he didnt tell his face. I remember going through this in 2011/2012. I was in agony for almost a year before getting a diagnosis after going private. I think I aged about 10yrs at that time.

notsochunky profile image
notsochunky

I watched with my hubby, and was shouting at the TV, "I know exactly how you feel". I think it made him understand me better because in real life even though I moan all the time, I always, I always deny being in "real" pain. I waited for the update at the end and it mentioned epilepsy . I remember thinking that can't be right.

in reply to notsochunky

Oh I only watched that specific bit showing her distress and 'absence' of the GP. That was enough!

Mmrr profile image
Mmrr

The GP was very typical of my experience with GPs throughout my RD experience. What really riles me is that we can all see the young woman requires a rheumatology referral, yet he can't. I too have been in the position of refusing to leave unless something is done to help me, as many of us here have too.

I've mentioned this before, but we seem to be knocking the empathy out of our young health professional though out their training, something is going wrong somewhere.

Plumcrumble profile image
Plumcrumble

Yes, very briefly I couldn't understand why they couldn't find out why she was in pain poor girl, they took a year to diagnose me with RA but that was back in 1979

I hope she is feeling better

I saw it and said it was exactly like me. I am desperate for pain relief and I think the GPs and my rhuemy just have no idea of how I am feeling with this constant pain. I am on morphine patches as well as oramorph and tramadols etc. but the pain goes on and on. Even my husband who never has an interest in medical programmes and was in the room at the time, stopped to watch that bit and said she was just like me. I just hope something can be sorted out for her.

ArcherDee profile image
ArcherDee

Oh my, I’ve just cried watching that as exactly the same conversation I had with so many gps and consultants. It took two years of me crying and saying I’d aged ten years in a year. Mine was only found by chance from a blood test before I had shoulder surgery! Everyone else fobbed me off until that consultant wrote to my go practice recommending I be referred to a rheumatologist. Even then I had to have go visits and ring multiple times to shufty them along before they did it.

Shalf profile image
Shalf in reply to ArcherDee

Your story applies to me too! Shoulder and everything!

ArcherDee profile image
ArcherDee in reply to Shalf

It’s crazy isn’t it. At least the one on tv was sympathetic. My practice made me feel like I was a hypochondriac eating their time every few months windging about pain. I wasn’t even on painkillers until diagnosed!

Shalf profile image
Shalf in reply to ArcherDee

Yes, almost identical! I was misdiagnosed as having a frozen shoulder by orthopaedic shoulder specialist! Has never been a frozen shoulder, rather RA nibbling away at my joint! It's procedure ( apparently) to do blood tests to rule out RA in this circumstance but wasn't done! Was treated aggressively with a cocktail of three dmards including methotrexate but alas, the damage was done!

So many people saying the same thing here. We're told to go for help early to catch that "window of opportunity". It sounds like gp's need to be more aware too.

Mmrr profile image
Mmrr in reply to

To be honest I am scunnered with most of the GPs I have seen.

in reply to Mmrr

Never heard the word scunnered! what part of the country does that come from Mmrr?

Mmrr profile image
Mmrr in reply to

Scotland !

I'm sorry it is a harsh comment - but it is the way I feel today !

in reply to Mmrr

I rather like the sound of the word, and if the word fits....

Shalf profile image
Shalf in reply to Mmrr

Scunnered alright!

Mmrr profile image
Mmrr in reply to

I'm sure you are aware but one of the delays for early treatment is delayed referral by GPs.

in reply to

A friend of a friend recently went to her GP re swollen hands, first visit and referred to Rheumatology! (GP has now retired.) Were older GPs more clued up? Only positive story I have heard so far.

Mmrr profile image
Mmrr in reply to

My understanding is that the GPs are under pressure not to refer unless absolutely necessary, due to the demand outstretching the supply. But that only adds to the problems due to giving an untrue reflection of waiting lists and more damaged joints/ill people requiring more care further down the line.

helixhelix profile image
helixhelix in reply to Mmrr

When I was diagnosed it was the hospital who had given directions to the GPs of who they should & shouldn't refer. I remember the GP pulling out a sheet of paper and looking at whether I would be accepted as a referral.....

I am RF negative so a higher threshold as that GPs surgery couldn't do anti-CCP. Can't remember the criteria now but it took at least three visits to GP to get them to recognise I met them.

in reply to helixhelix

Thats interesting. i don't think any guidance is given to GPs in this area even about how RA might present. Consultant asked why OH was paying to go privately when he should have been seen in the NHS urgently. Why indeed! I had half a mind to send the bill to the GP who wouldn't refer him.

Mmrr profile image
Mmrr in reply to helixhelix

I too am seronegative and had quite an atypical presentation. I estimate I visited the GP into double figure's, my partner had to 'demand' that something was done before I was referred. The initial GP was very non specific in what she thought wrong with me, just kept saying let's leave it another week. Another GP 'diagnosed' me as having tendonitis and migranes, another a mortons neuroma and yet another as being depressed and offered me antidepressants on 2 seperate occassions. All this despite being systemically ill, so we went private and was told that I had OA and my bunion probably required surgery (it doesn't, it's one of the few parts of me that doesn't cause problems ! ). Apart from issues with my WBC, my bloods are essentially normal.

All this despite being from a medical family who raised concerns (not that this should make any difference to patient care, I'm mentioning it merely to demonstrate that we were able to articulate my situation well, and between us had informed concerns about RD and mentioned this possibility on several occasions. How people in my situation without the backup I had get listened too is too awful to consider.)

I now contact the rheumatology nurse if I need guidance. I use the GPs for prescriptions only, and visit the phebotomist for my blood checks. My faith in the GP system has been shattered.

So much needs to be done to educate the educators in RD diagnosis and treatment.

Shalf profile image
Shalf in reply to Mmrr

Hear hear!

ArcherDee profile image
ArcherDee

For most people it then takes months also to get seated in front of a rheumatologist.

in reply to ArcherDee

Too true. At least it was in 2012 when I got diagnosed. I'd like to think it's improved by now but doubt it.

Mmrr profile image
Mmrr in reply to

It took 6 months for me to be seen by the rheumatologist, and that was after several confrontations with the GP. That was 18 months ago.

Damaged profile image
Damaged in reply to Mmrr

Wow! Could not imagine waiting six months to see a Rheumatologist. I saw mine within two weeks. Although, I was in serious condition by that time.

ArcherDee profile image
ArcherDee in reply to

Took about six months for me.

Paula-C profile image
Paula-C

I saw the programme and the poor girl had every classic symptom of RA. I felt so sorry for her, she really needs to be referred to the hospital. I'm hoping that in a future episode she's seen again and gets referred. If not I think someone should ring the surgery up and tell them to, she can't be left to suffer! xx

Mmrr profile image
Mmrr in reply to Paula-C

It is quite unbelievable

nablur profile image
nablur

Bummer. Can’t watch from USA.

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