What would be your dream care plan?: I have been... - NRAS

NRAS

31,525 members38,281 posts

What would be your dream care plan?

SlothSandpit profile image
SlothSandpit

I have been thinking recently about how terrible my ongoing care plan is, to the point where after two years I've only just discovered that my hospital offers a flare clinic! So my question to you all is, if you could create your dream care plan, what would that look like?

70 Replies

Wow, good question. Honestly, I just want to feel like my rheumy actually cares. Like I’m getting exactly the same treatment their Mum would get.

I’d like regular F2F appointments, access to all my records online, a messaging platform to contact the team on as and when I’m in a flare.

Blood tests done at home would be awesome. Even if it was a kit I could do myself and post back.

And then access to things like physio and hydrotherapy. And support with useful educational resources.

Plus, of course, some meds that actually work (that’s just bad luck for me as I’ve tried many). Hahaha.

But that’s a big dream 😉

SlothSandpit profile image
SlothSandpit in reply to LoneEra

I feel like regular appointments, access to records and flare support should be like BARE minimum. It's crazy that we're listing those in a dream care plan 😅Hydrotherapy would be so good. Does your rheumy not act like they care?

LoneEra profile image
LoneEra in reply to SlothSandpit

I’m a realist most of the time. Total dream care plan = be able to give up work and have someone feed me grapes all day 😂

I’ve only just got a new rheumy but he’s quite robotic!

My dream plan would be to have a new body. Since that's not possible, I agree with LoneEra that it would be to feel like doctors care.

SlothSandpit profile image
SlothSandpit in reply to Klutzy

A new body would be great, where do I sign up?

A great question....Top of my care plan....

1. Health care people who listen.

2. Then act on the information.

3. Being treated with honesty, dignity and respect.

4. Immediate investigations, direct from the rheumatology clinic (a one stop shop, which might mean a rheumatology appointment which takes all day, much better than the back and forward and long waits).

5. Access to all my medical information on line.

6. Not having to 'meet criteria' for appropriate medicines / be encouraged to stay on meds that don't work well and have nasty side effects.

SlothSandpit profile image
SlothSandpit in reply to Mmrr

That sounds so good. How much of that do you actually get right now?

Mmrr profile image
Mmrr in reply to SlothSandpit

A bit of a mixed bag of 1 , 2 and 3 depending upon which nurse and rheumatologist I see. But it is very inconsistent, I never know what I'm going into at each appointment. None of 4, 5 or 6.

Pippy25 profile image
Pippy25 in reply to Mmrr

Totally agree with you Mmrr.

J1707 profile image
J1707 in reply to Mmrr

That sums it up perfectly . Would add feet!! Feet are just dismissed and a battle to get good help. Should be part of regular checks .

Mmrr profile image
Mmrr in reply to J1707

Yes, my feet were the first boney/ joint issue

Deeb1764 profile image
Deeb1764 in reply to Mmrr

All the above for me too x

Neonkittie17 profile image
Neonkittie17 in reply to Mmrr

4. would be excellent!

A new slimline pain free body, Vin Diesel in his kilt at my beck and call, and not to wake up from this dream 🤷‍♀️🤦‍♀️😂

Neonkittie17 profile image
Neonkittie17 in reply to Bootoo

😄🤣😆

To know my name (emails always address to someone called Jean).

To listen to me

To not have to wait so long for everything.

Not feel so alone (has alot to do with waiting)

To have my disease process monitored and can track changes.

Not to have to fight for everything

For them to explain things to me rather than here is a leaflet or this is the NRAS website look up inflammatory arthritis.

In general for them to know me, show some empathy, maybe for them to contact me and say how you doing and make it evident we work as a team.

Oh my goodness they can't even get your name right 😳

The feeling alone bit is awful, especially in the first couple of years. You feel totally unsupported with a life changing disease. On top of that, you’re given drugs that have horrible side effects - and just left to get on with it.

The fact that contact with the team is so rare also makes it seem more important in your mind. So when I was in my first couple of years of “treatment” and in my naive 20s still, I used to have really high hopes for every appointment with the rheumatologist. I went in thinking “this time, something will change. I’ll come out with some answers and something new to try.”

Inevitably, I would leave the hospital after the appointment and call my Mum and just break down in tears - because all that had happened was a quick review and a lecture about sticking with the drugs.

It’s also very hard to stop RA from becoming your life when you are so alone with it. Your every waking thought becomes “how do I manage this? I can’t cope. What else can I do?”

This is partly why I walked away from all of the drugs and the hospital “care” for so long. Although I do not advocate this - it did bring me a weird inner peace because I wasn’t constantly angry at the system for not helping me. I knew I just had to help myself.

Anyway... 🙂 xx

whaleroad profile image
whaleroad in reply to LoneEra

Can completely relate. One of the reasons I'm reluctant to take part in this medical research project my hospital invited me to join is because I thought "Now I'm useful to you, you want my time. Where were you when I needed you?"

SlothSandpit profile image
SlothSandpit in reply to LoneEra

I think the feeling of being left to get on with it is almost the worst part. Just handed a leaflet like there you go, this is your life now. But it's such an incredibly heavy burden to carry and changes your whole life. The fact that the physical care isn't even up to scratch let alone considering the mental impact of RA... it baffles me.

I was considering trying to set up a patient participation group for my rheumatology department recently. I wanted to get referred elsewhere but then Covid happened and I thought maybe instead of running away from the department I could do something positive and try to change it.

But decided I don't have the time or the right type of personality to make this work. My hospital has these groups in a few departments, and any patient or relative can request to set one up. There's usually a lead from the department who gets involved and acts as liaison. It's about effecting change, not a means to complain. I think it would be a good idea for the right person.

Anyway, one of the first things I wanted to do was make sure that when you are given a diagnosis and handed that leaflet (or sent a leaflet in the post in my case!) that you are also given leaflets for community services: talking therapies, mental health support, arthritis support groups and helpline numbers, Samaritans, things like walking groups and other things that connect you with people and might benefit your physical health and stop that isolation. Friends and family are great but they're not always enough, and not everyone has them (and some people like it that way).

I was literally discharged from rheumatology without a diagnosis and told if I took up Pilates I would feel better. Then I had a bone scan and got a letter saying "we found some immune system inflammation in some joints" (What?!) and we think you should take this drug. Then an enclosed leaflet for hydroxychloroquine, which says it was for lupus and rheumatoid arthritis. Then a two-month wait to discuss it with the doctor. Yet they expect us not to Google 🤷‍♀️.

Thats awful.

They must realise sending you a leaflet in the post with your new diagnosis os way under par.

That's nothing - my dad was diagnosed with cancer by post.

😢

I really don't know what to say, your poor dad x

Mmrr profile image
Mmrr in reply to whaleroad

😥

Gif1986 profile image
Gif1986 in reply to LoneEra

This feels so true! Thank you x

Thats absolutely it. Absolutely.

I'm not a shy person and its becoming apparent that if you don't advocate for yourself with rhematology you get nowhere, well with my department. Hate to think what happens to people who are timid.

They’ll get nothing and if they don’t say I’m in agony etc they’ll be thought of as being alright and not needing anything. 😢

jojoishere profile image
jojoishere in reply to LoneEra

This made me so sad loneEra sounds like you have had a terrible time, hope things are better now x

LoneEra profile image
LoneEra in reply to jojoishere

Awww, thank you. Yes, it’s been 15 years now so I’m more used to it 🙂 And my lovely dog keeps me happy each day! x

I don't need a plan as such. Just let me have my scan and test results and talk to me like I'm an intelligent adult and I'd be happy.

It would be nice to have scans let alone test results instead of having painful problematic joints ignored.

Oh no, what do they say to you when you're having specific joint issues?

They make a noncommittal comment and change the subject. It is my fault as I have let them get away with it but no more - this forum has shown me that I need to be more insistent.

It makes you wonder whether it's laziness, lack of resource or the fact that they just don't know how to treat it!

I suspect it is to do with lack of / tightly restricted resources made much worse at the moment by the pandemic.

I’ve never been allowed a scan in 26 years on a joint!

LoneEra profile image
LoneEra in reply to Neonkittie17

Whaaaaaaaaat? No way. How on earth do they actually know what’s going on? That’s awful x

Neonkittie17 profile image
Neonkittie17 in reply to LoneEra

It is I am disgisted too. Totally. They say they only scan when you’ve agreed to have a replacement! My senior rheumy physio has made a lot of diagnoses on joints by his expert hands and eyes. I have had a general isotope body scan originally when diagnosed 1995 (bht thag was on BUPA) and a couple of Dexa’s on my hips but never a joint scan .. only xrays. My former senior rheumy yelled at me when I asked before. I told her forget it. x

LoneEra profile image
LoneEra in reply to Neonkittie17

Makes me sad 😢 I feel like setting up a “pushy chaperone” service and I’ll travel round the country to accompany people to their rheumy appointments and make sure they get the care they need x

Neonkittie17 profile image
Neonkittie17 in reply to LoneEra

I think I need to go too and give any unpleasant people a hard stare! (Think Paddington Bear meets Xena Warrior Princess! 😆) I’ve never met this odd admin woman who is often rude to me, but seen a photo and I mentioned on here before she looked like she was chewing a wasp! 😝

Gosh, all of the above! If they only knew just how true this is for all of us.I’d like to be spoken to like I’m an adult, and as it’s me in pain, not them, I wish they were more understanding and not so rigid with their thought processes. Being able to get through to the nurse line would be a plus, then if they would actually ring you back would also be nice.

Not care plan related, but ultimately I’d love to be back to where I was before all this started, seems a very long time ago now 😔

Yes totally about the phone line.

Helpline .. an I mprovement these days but still very much lacking. They are always changing the hours each week it is open for leaving a message and they say you can’t ask certain questions. I have had such delights as .. yup whaddya want? .. when a certain admin knew it was me. 😑 I’ve never been rude but she didn’t pass an urgent message on resulting in me becoming very unwell and likely she got a xxxxxxxing for it.

Not having to meet criteria before getting the biologics. I had to wait 2 years and in those 2 years then needed both hips replaced and shoulder replaced. Some cost cutting exercise that turned out to be! 🤨

That's ridiculous! 😱

Do you like sloths? Wondering with your user name. My son is sloth mad 😆

Yes I do 😂

HamHammy profile image
HamHammy in reply to HamHammy

😁

CripLady profile image
CripLady in reply to HamHammy

That’s appalling.. I am shocked that this was allowed to happen… I am upset I have never been put on biologics… I have ‘lost’ over ten years of my life so far on DMARDS.. My life is restricted to a ludicrous extent 😔Some people seem to get them straight away almost…

HamHammy profile image
HamHammy in reply to CripLady

Looking back it was absolutely inhumane. I was in shock with the pain and lacked knowledge of what was the procedure etc. Its done now and I dont look back but it is shocking

I agree with everything said above. I feel that my rheumatology department has become focused on diagnosis and medication support only. Although I feel terribly sorry for those that are experiencing long COVID it seems that the NHS is able to set up multi-disciplinary clinics to help these people (albeit somewhat belatedly) when those of us with chronic illness cannot access such a service. So I’m thinking psychological support (especially when newly diagnosed), hydrotherapy, podiatrists and physiotherapists that are actually trained in rheumatology and understand the conditions. Then perhaps they could also focus on helping us learn to live with the condition, protecting our mental health, maintaining our mobility, staying in work etc. Overall, I would like the care to be far more proactive rather than purely reactive (and constantly delayed) as it is now. And I’d like there to be some CARE!! 🤦‍♀️

This is such a good list. I have been so frustrated seeing stories about long covid. There was one in The Guardian the other day and the headline was 'Some long Covid sufferers in England waiting months for treatment' - and was like YEP welcome to the chronic illness community gang. 👍

Yes this

So another question based on what a lot of you have said - what does it mean to be spoken to like an adult? And what would make you feel listened to?

I think for me it’s the way I’m dismissed if I have any ideas of my own. I’m sure all of us on here do extensive research of our own, we are all as informed as we can be, but trying to get them to think outside the box as not one size fits all 🤷‍♀️ My Consultant doesn’t like to be challenged in any way.

1. Periodic scans to assess any damage progression (I haven't had an ultrasound since my initial diagnosis four years ago).

2. The rheumatology team to pay even a fraction of attention to the fact I have worsening foot and ankle pain which is affecting my mobility despite my inflammation levels showing as normal (which I believe isn't unusual with seronegative patients).

3. A specific diagnosis instead of 'it could be RA or it could be PsA'.

4. Access to better meds without all the criteria, especially since the criteria for biologics is less stringent for PsA than it is for RA.

5. To see a rheumatologist at least once every six months, who has empathy and makes actual eye contact, and who doesn't try to get you out the door after 5 minutes.

6. A rheumatology helpline where someone actually calls you back.

7. Easy access to pain clinics, specialist physiotherapists, podiatry, and counsellors specialised in living with chronic illness.

It's not too much to ask for, is it?

Absolutely not too much to ask! The inflammation levels one gets me. Yes my bloods are fine, but why are my joints still swollen and painful? It just feels like autoimmune conditions are barely understood.

Completely agree. I've read several medical journals where it's well-documented that inflammation isn't always a reliable indicator for sero-neg patients and yet everyone is like 'but your levels are normal'. Ugh.

It's been really interesting reading everyone's responses. I am (or was) incredibly lucky in that after an initially bad consultant I moved area and so was able to get an excellent one. 2 years later I moved again and the consultant wrote to my new GP with my history (this was before a semblance of sharing hospital / health records). My GP was incredible. By chance she had specialised in Rheumatology and helped out at a eekly clinic at the hospital. Along with a really good Consultant and hospital support there is honestly little that I could complain about. Unfortunately my wonderful doctor has retired and I have entered the real world. While support from the hospital is better than most, from reading posts, the lack of support from a totally disinterested GP is already causing problems. So can I add access to a local Rheumatology centre of excellence, which in my case was my GP.

Good question SlothSandpit, easily answered.

Regular quarterly appointments, immediate changes in dose/meds

A caring Rheumy

Appointments with Rheumy only

Immediate imaging, done during appointment

DAS score including feet, toes & ankles plus other joints (DAS 44)

Access to imaging/copy of imaging

No/limited nurse appointments

Prompt referral to other services/surgical

A direct phone number to Rheumy.

Access to health professionals would be a start.Should I get to see a doctor again id like someone who actually listened instead of just poking my joints asking my pain scale then doing nothing.

I'd like exercise sessions that were compatible with my disability. Pool time would be wonderful.

I'd like more scans and xrays to track disease progress and get to things before irreversible damage happens.

I like quicker access to the right drugs rather than been left in limbo for months on end.

I could go on....

Hi I would like to be respected as a person with a awful condition that I can’t medicate myself and need help,not a number in a tick box.

Hi are any of you signed up for “My Arthritis” I I’m finding this very helpful and informative.. if you not, take a look it might be helpful xx

SlothSandpit profile image
SlothSandpit in reply to Durrell

Ooh no, what's this?

ampersandhealth.co.uk/my-ar...

Take a look, maybe helpful

I’d like to have access to my biologics rheumy more, and a certain admin person who is notorious for making patients wait and deciding what will happen .. to be retired! There I said it! 😝 It’s true though. My rheumy biologics specialist sister is an absolute star and they should have her cloned!

I would have loved hydro-therapy at the start, and even after; I did ask.. I was alone with no support and was just left to get on with it. There does need to be a holistic approach. I had to source my own counselling (which was pretty cr*p tbh; CBT is what they have as standard) before finally getting a referral to a psycho-therapist many years later after sustained attempts through various services. I saw her every week for a year and definitely benefitted.

It angers me that people with ‘short term issues’ get lots of help and support with things, but those with chronic conditions ‘aren’t allowed’.

I have had RA for over ten years; ‘severely disabled’ as opposed to having a ‘normal life’. I am still on DMARDS.. and still have to source my own help/ therapy… it is very upsetting..

Still haven’t had an MRI…

Being treated like a human being!

You may also like...