Lack of support\follow up?

[hazelcats]

After 3 years + of increasing debilitating symptoms I was finally diagnosed with seronegative inflammatory arthritis in April. Four months earlier I also was diagnosed with fibromyalgia to go along with the osteoarthritis I had confirmed in 2022.

I saw a rheumatologist consultant in April who would only address the inflammatory arthritis, wouldn't touch the OA or fibro. In May I started mtx 15mg and last couple of week added in hydroxy.

Although I have had contact with nurses, I just cannot get the " three month " follow up I was told I would get, its now six months and I am fighting with everything to get an appt. Being pushed from one dept to another and promises of 'we will call you back ' never happens.

Told today my consultant left and I dont have an allocated Dr, they work on a triage system for appts. And... Yep, someone will call me back...

I feel completely unsupported. I have no idea how my arthritis is progressing. Being seronegative I was told xrays and scans would be used - been over a year since I had them.

Still on 2 weekly blood tests so assume am still not in a stable condition, with new meds and constant pain and flares having just stopped course of steroids.

In tears today just so frustrated and feel have no medical support from the hospital. Trying to juggle 3 chronic pain conditions (like many of us )just gives such bad overwhelming days like this. Feeling defeated.

Rant over 😠

[Fluffontoast]

Hc, I am so sorry to hear this. Sending you hugs and positivity. Make a GP appointment and take with you exactly what you have written here and show it to them. If you don't get any action from them, I think you should write a letter of FORMAL COMPLAINT to GP and hospital. There may be dispute resolution process with NHS, not sure. Keep a written journal of all your phone calls etc. Don't give up! Xxx

[hazelcats in reply to Fluffontoast]

Thanks Fluff. Its really getting to me know. I do have an appt Monday with a GP as my thyroid has got worse and triglycerides have gone up ( never rains etc 🙄) so I will try and see if I have time to bring it up. If not I have to take it further. Just never sure if these time delays are normal.Can I ask, as a fellow seronegative, how yours is monitored? As I assume the usual blood tests cant show as much as positives?

Btw if I dont get anywhere soon I'm bringing you in as my complaining support buddy!

Thanks as always 😍

[Fluffontoast in reply to hazelcats]

I have just had the usual scheduled blood tests plus an 8 week (more like 12 week) follow up f2f with the rheumy, but that's probably my lot now. Not expecting anything else because I'm fairly stable. There's a phoneline that is never answered but we can email, and occasionally the nurse responds. I had to ring up constantly for about 3 months and make a nuisance of myself with the GP until I got seen by the rheumy initially. I could have done with a health PA! Happy to offer you moral support and help writing a stiff letter if needed!

[hazelcats in reply to Fluffontoast]

Thanks for letting me know how its gone from your side. I am not going to leave it! I do use the phone line or msg the nurses, to be fair they really do get back quickly. Its all the assurances that someone will be in touch within 48 hrs ( and never do ) thats got to me. Just seems to be endless chasing and some days.we get to worn down to keep chasing.

Nice to have your back up Fluff. My flu jab tomorrow, hope yours.goes ok x

[Fruitandnutcase in reply to hazelcats]

Monitored 🤣🤣🤣 I was diagnosed with sero negative inflammatory arthritis back in 2014/5 to date the doctor who diagnosed and fast track referred me did a full set of bloods.

Since then I was started on 200mcg hydroxychloroquine and have on.y seen one consultant twice and the rest never more than once.

I have had my hands xrayed once and another set of bloods done once by the hospital in all that time.

I haven’t seen a rheumy since 2021 and that was only because I emailed the consultant’s secretary to request one because I hadn’t been seen for three years before that.

I’ve had no contact with rheumy nurses either. I’m always amazed when I read on here that people have regular treatment and contact with their rheumy dept.

It doesn’t particularly bother me because I’d say I’m ok at the moment but it’s not thanks to the care I get from my rheumy.

I know I would get an appointment eventually if I send them an email - or I think I would. Same with GPs it would be easier to find a unicorn than get a GP appointment and I don’t think I’ve ever seen the same person twice there either although I don’t go often so perhaps I would if I went more.

[hazelcats in reply to Fruitandnutcase]

That sounds atrocious. I mean I would expect less contact if I was stabilised and felt I was on the correct meds\dose, but assumed there would be at least some contact from the rheumy dept? The nurses i have contact with are good but obviously stretched for time.GP wise, f2f is difficult but I do use our surgery's email system for general advice or queries and they will as for a f2f if they deem it necessary.

[Fruitandnutcase in reply to hazelcats]

No contact from rheumy - that’s weird although I know where to get them and make contact if I feel the need - but I’ve had a couple of f2f and phone consultation with a GP for diverticulitis and for UTIs over the last couple of years. It just surprises me the variations in the different regions.

[OSTEOARTHRITISRA]

Understand where your coming from Try seperate other 2 conditions moveing forward for imput

You can ask to see senior Ot for imput from rumatologist for your ra

And same again gp for same treatment for the other 2 conditions

Probaly same treatment

If you get one it would help all conditions once your there

There is well being teams and physio as well

From rumatologist or gp

The physios

Have add ons from the physio as well

It is terrible treatment from your rumatologist department

I'd keep phoning till you get appointment etc and if get one ask for the add ons

Go to gp now for same treatments add ons etc

And pain relief

Hope you get see soon and treatments and add ons

You do need I put now

[hazelcats in reply to OSTEOARTHRITISRA]

Thank you I did have a good GP appt in July when I was struggling with all 3 conditions. He had originally prescribed Naprroxen for pain and inflammation which I still need alongside the mtx and hydroxy. We spoke about the fibromyalgia nerve pain so I am taking amitriptyline to help.He also chased physio. I had asked GP to refer me for physio in February. Turns out they wont touch me as my health is too complex! So was then referred to a pain clinic. They phoned in July and said... Its too complex too! They would sort out a tailored plan but it would take several weeks\months to set up.

Also await a hand occupational therapist, hospital referred me in April as I have finger deformities. So I'm trying to get the help but right now held back.

Definitely getting GP involved now

Thanks for your reply

[OSTEOARTHRITISRA in reply to hazelcats]

That's good with gp You could get another pain relief add on

If bad pain Naproxen alone may not do

If can take could try before a stronger pain relief

Paracetamol

Paracetamol helps other pain meds work better

Thinking about the pain clinic and physio

Never heard the likes terrible, the pain clinics are a hit and miss anyway ,physio terrible the way been treated

Rumatologists physios are usually a different league and good if you can get Rumatologist to refer to their physio in the hospital

Good about the OT

If you can a senior ot they are usually very good

[Neonkittie17 in reply to OSTEOARTHRITISRA]

I’m confused

[OSTEOARTHRITISRA in reply to Neonkittie17]

3.50 am got a reply ?

Got woken up

Confused you had a bad night 🌙?Couuld you elaborate please ,as I was replying to Hazel

hopefully hazel was not confused

Do apologise Hazel if that was the case on your post Hazel

[Neonkittie17 in reply to OSTEOARTHRITISRA]

Apols to you both, I was trying to reply to Hazel and not you. (Gremlins with my phone sticking then seems it’s been posting/typing on a delay. Did this on FB 4 times too.😑) I tried to post to Hazel around 10pm. My post was for Hazel not you. No, I’ve not had a bad night. I always turn off notifications for messages at night as some people are different time zones and I also get companies sending junk mail at 4am. Apols again this daft phone disturbed you.

[OSTEOARTHRITISRA in reply to Neonkittie17]

Ha ha ,I was beginning to think you had bad night ,or drinking too much coffee lol or from usa I'll turn my notifications off at night

Have a nice weekend Neonkittie no need to Apols

[Neonkittie17 in reply to OSTEOARTHRITISRA]

No, I don’t drink caffeine coffee! 😄 I’m in the UK but that’s what I meant too re different time zones and being disturbed at night with notifications when people don’t realise.

Thank you, you have a good weekend too and hope the sun is shining for you.

[hazelcats in reply to Neonkittie17]

Agree here, my mobile is switched off at least an hour before bed so that I also switch off... Mind you I barely feel switched on some days 🙄

[hazelcats in reply to OSTEOARTHRITISRA]

No I understood thanks, the OT (at hospital )said they have a minimum 6 month waiting list and thats how long I've been on list - may hear soon I hope. Physio was via GP, thats at a pain clinic which will cover with the chronic fatigue, like a multi discipline clinic.Am bringing this all up with GP on Mon. Thanks again

[medway-lady]

That’s a bit rough have you tried PALS? It might help. I don’t know anything else except writing and explaining but that is a dreadful situation to be in. Especially blood tests that often which may not be necessary. Good luck.

[hazelcats]

Thanks, I will talk to my GP surgery early next week and ask for their back up. PALs is in my mind to try if I dont get anywhere. Meanwhile the 2 weekly bloods are tomorrow!

I had wondered if I was just impatient or not understanding how treatment is monitored so good to hear it doesnt sound right.

[Amnesiac3637]

You should have a local Healthwatch team which has the power to monitor healthcare in your area and feed back to senior managers of the integrated Care Board which runs your hospital.

If you feel strongly enough about the lack of support and care from your rheumatology team contact them for advice. You can probably find them by googling Healthwatch for wherever you live. They are independent of the NHS. Best of luck.

[hazelcats in reply to Amnesiac3637]

Thats useful to know, have made a note in case i need to take it further - and this is another reason i love forums - this info may be needed for anyone else that it may be appropriate to know. Thank you

[Hopeful1]

Hi Hazelcats. Are you under the same hospital for all of your conditions? I believe many/all? hospitals have a PALS patient support organisation which might be able to stir some action for you. Good luck

[Hopeful1 in reply to Hopeful1]

If you search NHS PALS it gives more info

[hazelcats in reply to Hopeful1]

No, the rheumatologist would only treat the inflammatory arthritis, he said on my day of diagnosis they wont be looking at the OA or fibromyalgia.So GP referred my to a long term pain clinic for the symptoms that all 3 conditions bring, and offer meds advice, physio, diet etc. The GP ( who was very understanding ) I saw in July and we discussed nerve pain relief for the fibro ( amitriptyline)

My hope is by making small differences in each condition may have a cumulative effect on all my symptoms - as many will experience conditions often have a knock on effect with one another - and then old friend fibro loves to stir it all up .😠

[Memaw21]

hugs 💜💚

[AgedCrone]

Just a thought……If funds allow , and I understand correctly, that your Rheumatologist has just left, you could ask your GP to refer you to a private rheumatologist in your area who also has an NHS practice…& is willing to take you on to his list.

Not ideal..but at least you would get a second opinion & get a new consultant.

[hazelcats in reply to AgedCrone]

Thanks, funds cannot stretch to a solely private appt, but I would be asking asking my GP if he can help with current hospital dept or an NHS referral with a private practice if feasible.Appreciate your reply

[AgedCrone in reply to hazelcats]

I don’t understand what you mean. As far as I understand how it works is you pay to see a rheumy privately having made sure s/he has an NHS practice you can then be transferred to….unfortunately however you see a rheumy privately it means you are charged a fee…& it isn’t always a fast track…you still have to join a queue.

Your GP can certainly refer you to a a named rheumatologist at one of your local hospitals …. I think you said the rheumy you had been seeing had just left so that hospital will be short staffed until they replace that doctor….so maybe a change of hospital would get you an earlier appointment with more regular check ups?

But do explain to your GP how you think your present meds are working, Think it out & write it down so that when you are in front of that doctor you can explain everything clearly.I’m sure many of us have walked out of an appointment,& the minute the door closed we remembered what we hadn’t mentioned.

Good luck…..I hope your GP can help

[hazelcats in reply to AgedCrone]

I am very organised with any appt with bullet style notes, written in order of priority as i also never remember all my questions or concerns too! I also recommend in an appt, asking who you can address questions to at a later date ie an email address for much the same reasons.I shall see GP Monday for the appt he booked re elevated thyroid (tsh) and high triglycerides, but will advise him I shall be sending an email to address my concerns with rheumatology dept.

We live in a rural area, and I do not drive, also lack of public transport so the hospital I am at is a 40 mile round trip as it is, but I will ask GP recommendations. Thanks

[AgedCrone in reply to hazelcats]

Have you searched around for a hospital charity who supply drivers for hospital appoinments? I live in an area with no public transport and when I can’t drive to appointments I use one of these services and instead of paying £60 each way I went to the hospital yesterday and it cost me £26 return.

[Chester1975]

Sorry to hear this. I hope things improve for you. Please push with your GP as they can prescribe pregablin for your fibro. I also have fibromyalgia as well as RA. I was prescribed a very low dose of pregablin which is used to treat fibromyalgia. Much higher doses treat anxiety and depression. I no longer take anything for my Fibromyalgia as I made lifestyle changes and no longer suffer from the debilitating pain. I also bought an orthopaedic neck pillow which I sleep on and an orthopaedic mattress. I am gluten, wheat and dairy free and we cook mainly from scratch. I avoid certain brands of pasta and can only eat DeCecco and La Molisana and only eat pasta once a week or once every two weeks. I eat sweet potato as opposed to white potatoes (as they are inflammatory). These pastas are so much less processed than the other pastas available to buy in the supermarkets. I also follow an anti inflammatory diet. I try and get 20 minutes of exercise three times a week even if it’s gentle walking. I take a liquid Vitamin D3 spray with my meal each day just one spray on the tongue. Many RA patients are hugely deficient in this and vitamin B and I’ve noticed a huge improvement in pain levels and swelling. I also take the liquid vitamin B. Magnesium two hours before bed and two chewable calcium tablets with vitamin K (helps with absorption). I take liquid and chewable as they are easier for the body to absorb. All from Holland and Barrett except for the calcium tablets as they are prescribed as I was recently diagnosed with Osteopaenia. The stage before Osteoporosis. Xx I hope you start to get answers and feel better soon.

[hazelcats in reply to Chester1975]

We seem to follow a similar path Chester. When I was diagnosed with fibromyalgia the GP ( who pushed for inflammatory arthritis tests with my own GP) suggested many lifestyle changes which I implemented and ( mostly ) stick too. Been veggie for over 40 years so know the value of foods, and balancing things out. My b12 and vit D were low so I do supplement.

I am on amitriptyline for the fibro nerve pain ( low dose which I can up ) as everything can kick another condition off. My hope is to lower or stop some meds in the future, but as a Dr once said, being in severe pain can stress the body even further. So my aim now is to try to stabilise symptoms one at a time. Lifestyle changes are indeed essential and effective.

Interestingly I have recently switched to sweet potatoes for the same reason as you. And I listen to my body so much more. I move gently, try to stop before the boom and bust scenario, and have been forced to stop many household tasks that worsen the arthritis pain in my hands and wrists. Its hard to let go of that independence. Am beginning to swap gadgets in the home to lesson the pain.

Thanks for such a useful in depth reply

[Neonkittie17]

Sorry you are going through this. A suggestion here re when you go to see your GP re the thyroid (and I know how debilitating it can be as I had a rotten time with an overactive thyroid 2005-6.) It is so exhausting.

Due to the lack of time you’ll have with your GP at your appointment to discuss the thyroid issues with them, can you type a bullet point type note to take in and leave with the GP to read/action/put on your file re your RA concerns. (Your very active and painful RA and not getting a 3 monthly review, as told you would do with the rheumy team, when you don’t feel able to wait 6 months for your next appointment. Also the concerns re the lack of recent X-rays/scans. )

Ask if the GP is able to assist in saying this to the rheumy in an email or letter? I’ve done similar in the past. Then it’s not forgotten if it’s there on an email or letter/note. Ask too on your note that it’s scanned/added to your patient file. Good luck and hope you can get this all under better control. 🩷

[hazelcats in reply to Neonkittie17]

Thats going to help so much! And I feel a fool as I use the GP surgery message system and find it so effective - and have it printed on my records as ' proof ' as such.

Yes, mines underactive thyroid, have been treated for 25+ years, but its gone haywire. My poor body is under so much stress atm I think it doesnt know which way to turn!

Brilliant idea which I 100% will do. I was concerned about the limited time within allocated appointment time.

Everyones given such support and advice. I know have an immediate plan for Monday, and follow up plans to put in place if need be.

Thank you to everyone. I wish you all well

[Neonkittie17 in reply to hazelcats]

Aww not a fool at all .. you’re under fire at the mo re your health and the thyroid can play up when RA is not under control. That’s how my Graves/hyperthyroidism started after a really horrid spell of RA flaring in 2005 and my med at the time losing its efficacy.. You’re welcome and it works for me re taking a note/bullet points in to ask for reading/actioning and putting on my file, and my GP appreciates being kept in the loop from my perspective. Time goes so fast with the GP at your appointment. Good luck for Monday and hope you have a relaxing weekend. 🩷