NHS MDTs for chronic disease patients???!!!

NHS MDTs for chronic disease patients???!!!

Hello all πŸ€—

First a bit of intro:

If you've been following my posts, you'll know that since this time last year a really great NHS urology surgeon has been investigating & treating my lifelong "complex persistent pattern urinary tract + pyelonephritis infections"....this selfie was for my aged mother who lives in the states - taken on the day I went to stay overnight in hospital for rigid colposcopy & biopsy....

anyway, if you've been following my stuff, you'll also know that 1 month ago I saw the great NHS Women's Health Services Physio my urology surgeon had referred me to for pelvic floor fitness review + prolapse & motility investigations ...and that this physio identified multiple ehlers danlos hypermobility prolapses down there, complicated by my lifelong sjogrens aggravated IBS + immunoglobulinaemia gastro-complications. So, I guess my chronic early onset complex persistence pattern abdo/pelvic stuff is being well & truly focused on by our dear contrary complex persistent pattern πŸ˜‰ NHS! (Please forgive the "Dr speak", but 5 years on from the NHS recovering my infant onset lupus diagnosis, I've realised that when patients 'talk the talk', medics may be better predisposed to 'walk the walk'...so I'm trying to get the hang of this lingo)

Well I've just got home after my 5th urology clinic appt. my surgeon was just as great as ever, and this time she introduced me to the concept of NHS MDTs: Multidisciplinary Teams for patients with chronic diseases...AM I DREAMINGπŸ˜΄πŸ¦„: NO, seems these really do exist, and NOT just, as I'd imagined, for cancer or diabetes patients. (OR maybe I'm just behind: does everyone here know about these MDTs?).

Anyway, apparently at my local NHS hospital, my urology surgeon meets monthly with colleagues in gynaecology dept + colorectal dept + physiotherapy etc to discuss patients like me: how best to help us (which investigations/tests/imaging,

which procedures & by whom, which treatment, which monitoring etc)

When I got home I googled NHS MDT and loads of links came up - mostly for cancer patients, BUT here IS a link explaining a bit about their general application:

datadictionary.nhs.uk/data_...

So, are these NHS MDTs an example of the joined-up approach we've been saying is THE way to go in cases of immune dysfunction...well, I'm not letting myself hope for too much...but my gosh am I interested to find out how my chronic complex persistence pattern abdo/pelvic probs do or don't benefit from a MDT approach πŸ€”. Am not exactly looking forward to the MDT all peering together into my undercarriage...but if that's what this takes...I'll go along 😝😘

Has anyone else heard of or experienced NHS MDTs?

πŸ€πŸ€πŸ€πŸ€ coco

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  • You are as lovely as I expected you to be. MTDs ooomh Not had a great experience with them and neither has my sister for her kidney and adrenal cancers but different trust a[[ear to have different views.

    Nice to se you looking so well.

    xx

  • Ahhhh: thanks babs 😘...all I see are the rashes, dryness...the frailty & age....but was trying to look perky for my old ma

    Makes sense: diff NHS trusts, diff progress...

    XO

  • ox <3

  • πŸ˜˜πŸ€

  • Barnclown, hope it all goes well for you. I'm going to try and make enquiries with regard to MDTs. Good post. 🌺

  • Thanks mabsie: please let us know what you find out πŸ€

  • I'll do my best barnclown 🌾and certainly get back if I find anything useful that can help everyone on the forum. Not sure if I'll be successful but I'll give it a go. 'M'

  • πŸ‘ŒπŸ‘πŸ‘πŸ€

  • IMHO - it's a retrograde step if they do exist - BUT OMG WHAT A GOOD ONE!!!!!

    They used to exist, then gubmint made them next to impossible - and now I suspect Foundation Trusts are able to thumb their noses at gubmint. There are x such Trusts and I gather they are also looking at JH's "imposed contract" and thumbing their noses at that too.

    Hallelujah!!!!!

  • You're ultra well informed, PMRpro...so, please EEEK: why are MDTs a retrograde step? I so trust & respect your opinion! (Am brain dead after the appt prep etc, but am figuring: Good Retrograde as in the NHS had them once, lost 'em & now some good trusts are getting 'em back)

  • Read the rest of the sentence - there used to be multidisciplinary teams. It was normal (well, in the hospitals I worked in it was) but they were made near enough impossible by the changes made within the NHS. If they are happening again it is a re-invention of the wheel and what a wonderful one!

  • Got it: was just adding that to my reply above: thanks 🌟🌟🌟🌟

  • PS

    it's mainly thanks to your coaching, PMRpro, that I've actually landed this MDT thing: I felt v wobbly in October when my abdo/pelvic flare set in...but you helped me find my way into the right avenues of investigation...cannot thank you enough...and can't thank our wonderful forum enough for all your solidarity and kindness πŸ‘πŸ‘πŸ˜˜πŸ˜˜

  • I'm blushing madly here - can't imagine what it was I said...

  • OH BOY: you just said the RIGHT πŸ‘ŒπŸ‘ŒπŸ‘Œ "few" things...e.g.:

    prompted me to get my AAA scanned...which led to the full-on abdominal ultrasound

    Found me that published paper comparing US with CT with MRI....which meant I could confidently pursue the subject of further imaging with my urologist today (I feel that was what segued into her decision to go for a MDT approach in my case)

    IMHO: you're one of our GRRRRREATEST & best informed assets here πŸ‘‘

    But re MDTs: am not counting any chickens yet...am just vvvv interested to discover MDTs exist for chronic illness patients like us & that it seems I'll experience this approach...I think I'll be getting a better 'shot' at FULL ON multidisciplinary investigation....frankly, as with all the care I get from my typically big collection of clinics, I don't have much hope for treatment being more than palliative, but good palliative help IS PRECIOUS (WebMD: Palliative care is a kind of care for people who have serious illnesses. It is different from care to cure your illness, called curative treatment. Palliative care focuses on improving your quality of life-not just in your body, but also in your mind and spirit)

  • love this reply

    x

  • πŸ€—πŸ˜‰πŸ˜˜

  • You blush? never

    xx

  • Agreed when they worked they worked well. Getting people together to share options and make a decision, amazing thought! NHS trust doomed them services were split, meeting became impossible and services crossed boarders. All political for a change.

  • Hi lovely coco, I have always loved your profile picture when you were younger and now you are just as lovely as you were then. It's funny how you say PMRpro has helped you along the way, pointing you in the right direction which is what you have done for me and others on this forum. Information and support has helped me to understand about autoimmune diseases and others.

    PMRpro has recently helped me a lot with my father and the information she has given me in the last couple of days is helping the family arm themselves to be ready to tackle the doctors and get my father seen again by a specialist.

    Years ago our local hospital was the centre of a television programme and I am sure they had an episode where they were discussing a young person and in that discussion the attendees were from different fields of the medical profession deciding on how best to treat their patient. Not sure this was MDT but I sure wish I could remember. I worked at this hospital 30 years ago but can't remember group meetings with different consultants discussing one patient, it was just patients getting referred to other consultants.

    You take care coco and your picture goes alongside Twitchytoes on my office noticeboard. One day when I collect some more I will upload my noticeboard ( if I can work out how to do it)

    Keep us informed. Love as always noonoox

  • Dear noono, every time I read your posts/replies I feel circled in warmth, experience, common sense and intelligence πŸ’ž. I'm blushing at your lovely words about me...if I'm any of those things it's largely thanks to you and all our friends here.

    What would we do without PMRpro?! Am wishing you, your father and the whole family every best wish πŸ€πŸ€πŸ€πŸ€

    I'm fascinated by your memories of the un-joined-up clinical approach at your NHS hospital when you were working: over the years, the media has made us well aware of the big diff between hospital trusts... It is what it is! Twitchy's BIG MOVE to the main land is partly about this...and medical care isn't the only reason for moving: parents move house to get the right schools...I've always had mixed feelings about our smallish local hospital for various reasons: this MDT thing could well turn me into a GRRRRREAT fan...πŸ˜‰

    πŸ€—πŸ˜˜πŸ’

  • Koala.

  • πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜˜πŸ€

  • Love the selfie Barnclown.Its lovely to put a face to your name.You look lovely just as I imagined you'd look as you seem to be a very caring person.Delighted you are being looked after so well by interested doctors.Good luck hope all goes well for you.

  • I just wanted to feel I'm actually looking at you all direct, if you know what I mean, circles...you all mean so much to me πŸ€—πŸ’πŸ˜˜πŸ€

  • The photo of you shows, kindness, strength and resilience which you spread generously to us all here. It really is lovely and there you were in hospital too for not so pleasant investigations, yet still look beautiful and so calm and serene.

    I am your age too, as you know, but get my husband to delete many of my photos!!He tends to take them unexpectedly mid eating, or mid expression when I am screwing up my face!! Mind you he does this to the whole family much to their consternation, especially my daughters in law!

    Thank you too for sharing such wonderful info, I will ask my Rheumy about MDTs in my area here in Scotland.

    My friend is a vet and she has always said they would have got me sorted out years ago. In the great vet hospitals in Glasgow and Edinburgh all the consultants get together and sort out difficult problems as a team.

    But it would be wonderful for us all as a palliative type of care too. So many of us suffer terribly and I am so grateful for the forum and folk like you Coco where we can spill out our worries to our hearts content yet won't be judged.

    I recently met a rather arrogant gastric consultant as my old one had retired and he was assessing my medical history.

    Gosh, you have had so many operations he shrieked , you have been to so many different areas, gynocology , urology, gastroenterology, neurology, dermatology etc etc. He repeated this with a laugh to the nurse when he was examining me as it was spot all the operation scars time!!

    I began life at 14 with extensive endometriosis and agonising pain from it till I was over fifty and multiple operations , then pancreatitis, biliary and bowel opeartations and a dangerously burst disc in my neck hence another op.

    I felt like slapping his face but kept a dignified silence!!!

    No point in explaining, I wrote a letter to him later, that shut him up and I did get a polite one back.

    We are up against so much and I don't belittle at all the palliative care those with cancer receive. I have lost some very dear friends and family to that ,but what we have too is pretty unbearable at times ,and can seem a life sentence!

    But MDT would change the lives of so many, fingers crossed it will be the future.

    Thanks as always Coco for this great info and your lovely photo , and hope no more hospital stays for a while for you ,but a good new treatment plan!

    C xo

  • Oh cutty...I read your amazing reply....and I feel dumbfounded with RESPECT ✊: you are a GRRRRREAT role model here on forum🌟: your depth of experience and your generosity in sharing it make you a 🌟 mentor for us all. You've made me laugh & cry at one & the same time so often, and with this wonderful reply of yours I'm doing this againπŸ˜‚πŸ˜‚ πŸ˜‚.... As yours & effie's & twitchy's & Mandy's & so many others' wonderful posts illustrate so vividly: we can & do look the dark side of our immune dysfunction straight in the face while we're braving it out, and tears are natural meanwhile...yet we can & do seize & share every smile & chuckle possible, treasuring each glimmer of precious brightness against the darkness βœŒοΈπŸ’πŸ˜˜πŸ€

  • Thanks for that Coco ,your comments about the brightness really wins home I am sure for us all.

    Maybe there is a richness in life we can glimpse just because we suffer!

    But we are only human and tears of rage against it all and unfeeling ignorant medics, are a necessary release.

    Thankfully there are many diamonds out there among the medical profession too, I expect that is why we want to hug and squeeze them when we meet them!!

    They understand, they connect, that is all we want!!

    C xx

  • You are so right: while I was making the bed this morning I had a vision of my urology surgeon's lovely smiling face....at that very moment all I wanted was to hug & squeeze her: she is so young (late 30s I guess) and v accomplished already + has received awards & things. Her manner is totally natural and informal, she might as well be having a chat with her best buddy rather than me. She is full of human interest & empathy & yet totally professional. I've been through quite a lot with her in the past 12 months, and as yet there are no disappoinments. yes, I do have other good consultants...but this young woman & her team at our little local hospital are exceptional. Diamonds IS the word for them! πŸ‘πŸ‘πŸ‘

    Your wise words about life with the stuff we endure sum it all up beautifully: thanks so much cuttyπŸ‘πŸ‘πŸ‘

    πŸ˜˜πŸ€

  • So nice to see the kind and beautiful person behind the great posts you write!

  • πŸ€—πŸŒΊπŸ˜˜πŸ€

  • Hello Barnclown

    Great to see a lovely photo of you, such a kind , gentle face but as we all know underneath you have such strength of character because of all you've have to cope with!.

    Thank you for such an interesting post as I have read the link and have learnt that the multi- disciplinary meetings can also include other specialities. I didn't know this. This is even better having doctors and other clinicians working together for the benefit of us patients. It could help make doctors a bit more open minded which is still needed. I am really pleased at this as my Pain Clinic at my local small district hospital has become a MDT and one of it's members, my Physio, said they were the first hospital in the country to take up this model for a pain clinic. It seems to be working well too.

    I am glad your Urology appt went so well and hope you get the investigations and treatment you need TAKE CAREX

  • WOW: πŸ‘πŸ‘πŸ‘πŸ‘ I think it's FAB that you're getting the MDT approach for your chronic pain syndrome, and that it's going well...some of these small local hospitals like yours & mine do seem to be leading the way - making an extra special effort for us: small can be v beautiful!...this is so encouraging: am delighted by your news πŸ‘ŒπŸ‘πŸ€— and hope you'll keep us posted on how the MDT approach goes for you.

    Many thanks for all your kind words & encouragement: you've made all the diff to me & so many others over the years, dear misty πŸŒŸπŸ’πŸ˜˜

  • here is another NHS link in which MDTs are discussed in general:

    journalslibrary.nihr.ac.uk/...

  • Hi Barnclown

    Thanks for posting another MDT link. What a lot of NHS gobbledegook though!. Hard to know what they mean but good they're going to assess the effectiveness of these MDT's!. Good luck today, hope your appointment goes well. X

  • πŸ˜†and that's only the abbreviated version of that study report! What I liked about it, though, are the report's confirmations that MDTs can be very effective + that smaller MDTs work best (no-brainers I'd have thought) + that MDTs must be run well in order to succeed. All obvious, but we know how easily these things can turn into all talk & no effective action....off to see another another member of my MDT (this WHS physio) now...thanks so much, misty...am feeling as if you're by my side today! πŸ€—πŸ˜˜πŸ€

  • Hi Barnclown

    Thanks for prΓ©cis of MDT report, so agree about these things can be all talk and no action. I think we're going to be very grateful for our smaller hospitals achieving them well. My pain clinic is. My Physio said what a good team they have become. Fingers crossed for you. XπŸ‘ŒπŸ»β­οΈπŸ˜Š

  • Hi, firstly I'm sure your undercarriage is a thing to behold! As a community nurse I was aware of MDT for children with complex needs and also the elderly. However, I haven't seen it in our cases. Sometimes the lead consultant may call team meetings for a patient. Well done your consultant for pulling this together. The nearest I have come is my consultants emailing each other!

  • I suppose you have to be grateful they know the others even exist ;-)

  • Thanks johare: so interesting re your professional awareness of MDTs. I'll learn more about my consultant's team tomorrow when I have my 2nd WHS physio appt tomorrow (thus physio is on the MDT). Apparently thus particular MDT meets every month and includes also a colorectal & a gyn consultant...am not sure if more than these 4 attend the meetings.

    Your faith in my undercarriage has given me a good chuckle...πŸ˜‰πŸ˜˜πŸ€

  • I am under MDT. This was initiated by one of the consultants. It has benefits. If there was an underperforming consultant, his ass will be kicked so that he would be doing more for the patient. I have seen this happen in my care. It's a good thing. You are taken seriously but it also means how bad your condition really is, bad enough to end up seeing so many consultants. A question. How many consultants did you see last year? How many new consultants do you see in March? If you will see 3-4 new docs in March only, you are a MD T case..πŸ˜±πŸ˜• If your GP cannot remember how many letters your docs sent to her or him this month only, you are probably a MDT case. It means you are a complex case. 😷

  • GRRRREAT reply coniston, thanks! πŸŒŸπŸ‘πŸ‘I totally agree....and I like your ?s for establishing complexity! My longstanding official GP left our practice last summer. Before he departed I saw him to thank him (actually he wasn't as helpful as the unofficial woman GP I've been seeing more often since 2007, but when she hasn't been free, he has been better than the other gps in our practice). At that last goodbye appt, I asked him if it was really appropriate & even necessary for me to continually be my own NHS administrator + coordinator + patient advocate? He frankly & openly said YES: and explained the surgery cannot carry out these functions for Complex Patients like me...and if I don't do this stuff, no one will...and my investigations, monitoring & care will get into a big muddle. That was when I discovered this official term Complex Patient....and that it applies to me....and that having this label means my surgery allows me 20min appts as standard! I thought: how come it took so long for you guys to let me in on this precious bit of info!πŸ˜‚πŸ‘ŒπŸ€—πŸ˜˜πŸ€

  • Hello..how nice to see your glamourous face!!! I can't comment on the NHS but am so πŸ˜„ For you, a team approach is the only way to go for a lady with such multi systemic happenings. My other half is a urologist and works closely with other specialists referring reading reports and liaising . Am so glad you are being looked after dear barnclown xxoo Penelope -Mary 🌼

  • Glamorous, moi?! πŸ€—πŸ˜˜...thanks Penelope-Mary! Oh My: being so close to a consultant must mean you really truly madly deeply understand how the System works + how to make the most of it. I'd never seen a urologist until this time last year...the dept at my little local hospital is brilliant! Am wondering if there is something special about the folk who decide to make urology their focus. Well, off I go this morning to see the WHS physio on my MDT ...your kindness is putting a spring in my step. Take care πŸ€πŸ€πŸ€πŸ€

  • πŸ‘―πŸ‘― ChΓ¨re Coco, sending warm thoughts for your day with the team: always an emotional roller coaster, hope the physio is gentle and kind.

    Not sure that's it's an insight being married for nearly 40 years to a consultant , I do know the vast majority really do care, but they are under enormous bureaucratic pressure, n'importe quel pays, oui je suis Marie- Pénélope in disguise 😝😝😝😝.

    🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼🌼

  • CHAPEAU, M-P!πŸ˜˜πŸ’

    She was v gentle & kind, thanks. And yes: am feeling distinctly roller coasterish. But I'm ok: between nice Physio, urologist, husband & you here: everything is so much more bearable

    Am glad you point out the significance of the degree of bureaucratic pressure on our medics: I do try to never forget how tough this is on them, but your mention of it helps.

    πŸ€πŸ€πŸ€πŸ€

  • Coco c'est bonne nuit from me, I did wait up to hear how you went. We are vulnerable as we walk into their care, am glad you had a good experience .πŸ‘πŸΌπŸŒ·πŸ’πŸŒ·

    M.P πŸ™‹πŸΌ

  • πŸŒŸπŸ‘πŸ‘ŒπŸ€

  • Hi Coco!!

    Your lovely photo gives me HOPE! The hope that one day, my tired, red eyes/eyelids will look fresh and healthy and my complexion will clear. No one would ever glance at you and have any idea of the chronic health issues you tackle with every single day. Your positive and warm spirit spills from your pores! I am not in the least bit surprised at how beautiful you are - your posts and messages are always filled with such kindness, compassion and care, not to mention incredibly informative!

    I hope your MDT keeps you healthy and strong for many, many years to come!!

    xoxox

    Tracy

  • Oh Tracy: I feel fantastic that you're feeling this way: means the world to me. πŸ€— I guess you're seeing what it looks like when 62 year old me is feeling generally better than I have since my 20s....my take on this improvement is that it is thanks mainly to the help I've had from good lupus friends + good doctors + hydroxy + amitrip + myco + pred + the right antibiotics at the right moments + a lifetime of fairly conscientious lifestyle management (inc therapy). At times like the present, when I'm dealing with yet another gynaecological challenge which inevitably relates to my DES birth defects, feedback like yours is exactly what I need to keep my fears on the back seat. Thanks Tracy: go for it girl: you're already well on the way to feeling much much better πŸŒŸπŸ‘πŸ‘πŸ€

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