Saga. Update. Visit to Man Royal Infirmary to see... - LUPUS UK

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Saga. Update. Visit to Man Royal Infirmary to see Lupus nurse after Rheumy discharged me.

Footygirl profile image
28 Replies

Can hardly write for tears.

PMRpro, if you are reading this, there is care here in the UK. I have found it at the MRI.

Went for my appointment, which you know was going to mean so much. Was met with, "you have cancelled this appoinment, you are not on our system."

Tears? Good job my fat keeps me afloat. Turned out to be the cruelist of coincidences, both things! Despite that, the receptionist was at pains to help, seeing my distress, spoke to the head nurse, and said a nurse would see me. We went into overdrive thinking vindictiveness etc but the coincidence was pointed out. Pheweeeeeee!

I cannot begin to tell you what that felt like. From my experiences of St Helens Hospital, it is my opinion that if it had happened there, I would have been turned away.

The oh so experienced Lupus Nurse Emma, listened, was clearly most sympathetic to what I had experienced at St Helens Rheumatology department, though was too professional to comment, then symbolically opened her/the MRI/Kellgren Centre arms and hugged me.

I am on their service now. Not only are they my Lupus doctors, they will be my Rheumatologists too. I have three ways to contact them for advice, reassurance, help should I need it. Emma made me an appointment for Christmas time, to keep an eye on me. I showed her last months blood test from St H which had my potassium at 5.7 which I was worried about and no one had shown interest in. (Its been floating around 4.8/5.2 for months.) she immediately wanted to know my current creatinine levels and potassium levels and after the talk she sent me for urgent bloods and urine test. I had had my bloods done at St H this morning as per four weekly,(not scrubbed off that system... yet!) so Two empty arms!!! Yes I am that old. Good old Hancock!

I was totally deflated on my exit... in a good way. Here was care I had only read about on here! I felt cared for, concerned about and totally supported. NEVER, EVER felt that before.

So I am in the care of my eager young fresh GP. I will update her next week to give time for Emmas letter to reach her. She will outline all the proposed steps which include a 10 week course at Manchester in Fibromyalgia support. When Doctor Gorodkin (Lupus Specialist I saw on referal in May) one of her many recommendations was OT and Physio referral. My, then useless GP referred me to St H hosp to a 'physiotherapist service for older people' ( cheers, thanks, made up!) where my basic muscle strength was assessed and I was given exercises to perform daily, gentle ones, ok that was useful, but ?? That circumvented both OT and PHYSIO! Emma has corrected that. She has also noted that as all the pills n potions for my Sjorgrens have not been successful, that Dr Gorodkin had said, in her four page report after my first meeting with her, that forgot the name!! something ending in ...pin as a tablet might help.

Emma ALSO said that the ongoing and worsening problem with my stomach not emptying for hours and the belaboured passage of poo (sorry TMI) was down to Sjorgrens too, which no one had suggested, and so lessened my worry that my neuropathy was escalating, to looking at trees not the woods. Simple. Remember I have been sent a gastro apt following my fibro scan on my liver (AIHep) where three gall stones were discovered "floating around". I do hope she is going to remove them, as I am sure you will agree that I do NOT want them floating around to lodge somewhere and cause even more mayhem. But I digress.

All in all I cannot praise every member of staff, and I include red tee shirted people who prowl the corridors to help anyone hesitating for one second and looking lost, for their friendliness, compassion, good humour and care. I feel that I went to another country, ref my PMRpro comment, like Italy. I will get copies of letters, results etc as a matter of course and feel like I have a large, soft comfy safety net to land in should I have the least concern. Bravo MRI. This is the NHS that people eulogise over. I have never seen it before.

It is the irony of ironies that as a Liverpool fan, I had to go to Manchester to find it.

I hope you will rejoice with me that I have found safe harbour whilst tossed in this awful boat called Lupus, at last.

With grateful, heartfelt thanks to everyone at the Man Roy Inf

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Footygirl profile image
Footygirl
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28 Replies
happytulip profile image
happytulip

Woohoo!! Can't stop to write a big message at the moment but will do soon. I am so pleased that you will finally be getting the care and understanding that you have needed for a long time. Xx

Footygirl profile image
Footygirl in reply to happytulip

Thank you HT. So happy to find support at last.

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littleeffie profile image
littleeffie

Yeay 😃 Go footy 😁Go footy😀!

So very very pleased for you😆

It's about time you got a good break for once.

Thanks for update and still smiling for you.

Great news for you or anyone else looking for a proper hospital.

Keep us knowing how things go but for now enjoy that moment.

Footygirl profile image
Footygirl in reply to littleeffie

Thank you guru. It means so much to share this triumph with those who have held me up and comforted and advised me over such a long desperate time

Love

⚽️

Footygirl profile image
Footygirl

Dr Rachel Gorodkin Consultant Kellgren Centre (which is Rheumatology BUT it is (damn memory! Words to the effect Lupus centre of excellence ie patients referred from Cumbria and UK wide) MRI. Which comes under Central Manchester University Trust, in case you are not aware. Just to confuse us poor mind befuddled lupus folk.

Cheers windowave

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mirren profile image
mirren

Delighted for you! I have my care at MRI and I also work there - I am under rheumatologist for probable PsA/CTD ? MCTD - I had a shaky start but my rheum nurse Carole has been amazing. She completely turned my life around since May - took my disease by the neck and got me on much more aggressive treatment - she literally gave me a summer. I am not in remission and when I saw the doctor in August she thinks I now have thoracic and cervical spinal involvement which WILL mean biologics (currently on full dose triple DMARDs - but I truly feel listened to and cared about now. Priceless.

I am very proud of my hospital - huge city centre hospitals can struggle to delver consistent care just because of volume and staff turnover - but there is a culture at MRI to strive for excellence and to work towards gold standard in everything from admin to conzultants.

We might even bump into each other there :) xx

Footygirl profile image
Footygirl in reply to mirren

Mirren

How lovely to meet you.

So lovely to meet someone who, like me, recognises true care. Not that others don't, I mean having been treated less than well then finding utopia.

How do I tell you how to recognise me?

I shall PM you if that is ok. I don't want to scare the other readers ha ha 😂😂😂

Sorry that you have developments, but happy that you could not be in better hands.

I should have seen Carole by the way but Emma became free first. Are they not the most genuine girls? Nursing care at its best.

Ill be in touch

⚽️

littleeffie profile image
littleeffie in reply to Footygirl

Still waiting on the recognise us Lupieeeee badges design 😃

Footygirl profile image
Footygirl in reply to littleeffie

Well thats down to our resident artist Twitchy, but she needs a rest just now! When you are ready TT, something only we will be able to recognise and I as a ham fisted body can copy! No pressure!

Xx

⚽️

mirren profile image
mirren in reply to Footygirl

Course you can inbox me :) x

Footygirl profile image
Footygirl

My complete pleasure, knowing the caring, soft landing you will get.

Maybe you me and Mirren can meet at Costa coffee which is opposite the Kellgren. Dyou know, it had Air Con today... The clinic I mean Bliss.

⚽️

Footygirl profile image
Footygirl

Is that for Mirren?

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Footygirl profile image
Footygirl

I am overwhelmed by your kind responses.

❤️

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Footygirl profile image
Footygirl

Will pm you

⚽️

Barnclown profile image
Barnclown

😘😘😘😘👏👏👏👏👏🌟🌟🌟🌟🌟only just discovered your WONDERFUL post & this WONDERFUL discussion...everyone has said it all...am just SO HAPPY for you dear ⚽️ footy 👍👍👍👍👍 and am sending you LOVE ❤️🍀❤️🍀❤️

PS after a lifetime of upper GI investigations, diagnosis & treatment + the past 11 months of same to my lower GI, my medics are all saying the same thing about my GI dysmotility....BOO HISS sjogrens 😉😜💃

mirren profile image
mirren

I don't have lupus diagnosis - my primary condition is inflammatory arthritis and there was no question of that,my shaky start was under treatment and that threatened my career. I also have CTD but it's not really doing anything.

smudge1980 profile image
smudge1980

Wow Footygirl, that's brilliant news! So happy for you 🙌 I'm just going to get ready to go to my lupus clinic appointment this morning & feel like I'm just going to waste money on taxi fares & waste my morning sitting around in a hot stuffy hospital 😕 So pleased you're finally getting the treatment you deserve ( and I'm slightly jealous 😉)

Lupiknits profile image
Lupiknits

This makes my heart sing! As you say, an NHS triumph .......and a brilliant lifechanger for you!

Footygirl profile image
Footygirl in reply to Lupiknits

What a lovely way to put it. Ahhh you'll have me started again!😩😫 but happy tears, that is if any appear ditto bc boo hiss Sjorgrens indeed.

Thanks lupiknit. By the way, what do you knit?

Love

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Lupiknits profile image
Lupiknits in reply to Footygirl

Just cry happy, Footy x I knit more or less anything these days. OT said it was fab for my hand, yayyy. You can get special needles, too, which help. If I can work out how to post a piccie, I'll show something x

Footygirl profile image
Footygirl

Gorodkin pet

LupieLady1 profile image
LupieLady1

Hi Footygirl, so pleased to read your post. As lead assessor, I knew it was the right decision to give the Kellgren Centre. MRI, the accolade of LUPUS UK Centre of Excellence.

Best wishes to you and all who attend the Unit.

Footygirl profile image
Footygirl in reply to LupieLady1

Kudos Lupielady1 spot on!

Still taking it in! Soo many things being put in place, for me already.

😀😀😀😀😀😀😀😀😀😀

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PMRpro profile image
PMRpro

So so pleased Footygirl - I know it is still there in the UK, it just has to be found. My former nurse daughter expressed admiration - "an altogether better patient experience" she said. It's even triggered a thought for her of returning to nursing after all - I do hope so as she would make a superb specialist nurse in the right field. When they are good they are very very good - unfortunately the other can apply but they are so often way ahead of their junior medic colleagues in empathy and understanding pathways for care. And they deign to explain too.

Onwards and upwards...

Footygirl profile image
Footygirl

Blackgoose you are welcome. Hope you put your case forward and not let him say no. Condense your reasons, firm request not ask if.

Power to your elbow. Use the electronic booking system he can start from his desk

Love

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seanto profile image
seanto

Im so happy that you have found someone willing to help you. It sounds like such an amazing place.

PMRpro profile image
PMRpro

Footy - I though you might like to know that when you wrote the first post here I read it out to my older daughter where we were visiting at the time. About a year ago she went through some rather unpleasant experiences with the unit she was nursing on and even OH said she couldn't go back there - but the NHS doesn't automatically transfer you for any reason, you have to apply for jobs. Which you may or may not get. She decided to ditch nursing.

She went into social care - which has been awful! It was a private company providing the services - and it has become very obvious they are more interested in their profits (to run a yacht) than in providing a safe work environment for their staff. She was beaten up by a couple of the residents a few weeks ago - and has realised she can't go back. She has children, they must come first.

When i read out your post she immediately commented how great that was - and she'd like that experience. Today she has re-registered as a nurse. Thank you!

Footygirl profile image
Footygirl in reply to PMRpro

Oh. What can I say? I am pleased that your brave daughter has refound her vocation through the example of the Lupus unit at Manchester and sincerely hope she can find a specialty/area that will give her the job satisfaction that Sister Emma, et al must get.

I am humbled that my reporting that experience has inspired your daughter to re-register. Thanks guru for telling me that.

I wish her every success.

Love

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