rheumatology treatment

[Luludean]

I can not find the post that listed the tests that rheumatology departments should carry out annually on their patients. The post writer sent a link for nhs guidelines , nic, for many blood tests and heartchecks etc that should be done alongside rheumarology treatment. Can this link be re posted please.

[AgedCrone]

I think you will find once you have a diagnosis of RA you will get the checks tests & treatment that your Consultant Rheumatologist deems necessary.

The NHS guidelines are just that……guidelines…..you won’t get everything mentioned unless you show symptoms that you need such a test.

These days some people aren’t even able to get annual check ups, so don’t get upset if you don’t get everything mentioned on the list you are looking for.

[Boxerlady]

If you look on the NRAS site there's lots of information like that 😉

[Deeb1764]

this is on the NRAS site

nras.org.uk/resource/nice-r....

[Luludean in reply to Deeb1764]

Thank you Deeb, boxerlady and aged crone.

I had multiple rheumatoid diagnoses 5 years ago . I was seen face to face twice. The consultant ( polite when seen privately once) is unpleasant on the nhs. Does not look at me answers no questions. Yes I have tried to change consultant. Yes I have asked for yearly check ups . Also asked for a multidisciplinary consultation . ( I have multiple co morbidities ) Have left polite question on nurse helpline . 13 days later no reply.

That is why I wondered what nhs guidelines were, if one is not seen how can they possibly «  deem » which tests are necessary.

I am fully aware of nhs problems. We all are. I owe my life to nhs . But, it is patently obvious that some departments are run / managed much better than others. Bad feeling at the top filters through the department and affects the patients .

[KittyJ in reply to Luludean]

From your bio I’m assuming as you’re very near to me you are under the same rheumy department. It’s all gone to pot there since before covid, Nurses take ages to get back to you and appointments are non existent or cancelled and not rearranged. I’ve spoken to my GP about needing to be seen for a problem and they were horrified I couldn’t be seen but were able to get me a face to face appointment but it does seem unless you need to be seen they aren’t doing check up appointments like those in the past any more. Have you spoken to your GP? I’m assuming you have a reason you need to be seen and they can back you up on that but if it’s just a general check up you’re wanting sadly I don’t think we will be getting those any more. X-rays etc will not be done unless there’s a need I have found now whereas in the past they were done every couple of years. It’s sad because the rheumy department used to be a great one. PALS is your next stop if you need to be seen and aren’t getting anywhere. Good luck 🤞🏻

[AgedCrone in reply to Luludean]

The best we can do is make our own Rheumy team aware of any problems we feel need addressing & our individual teams , who have our current state of health on their records, will decide on any tests/ treatments that are needed. On the whole I think most Rheumy teams are doing their best..they are very understaffed & overworked …so they are as dissatisfied with the situation as patients are.

I know it’s very frustrating, but if we don’t get what we feel we need…after exhausting NHS availability….finances allowing,…..we just have to resort to a Private consultation. I don’t think it often has to come to that.

[Luludean in reply to AgedCrone]

Ugh!!!!!! I had a disastrous private rheumatology appointment here.

Told me my heart was fine…. I have had mitral valve repair( scar) and am in persistent AF. He also stated I have visible psoriasis . I have not.

[AgedCrone in reply to Luludean]

Maybe have a word with your GP to refer you to a different rheumy consultant. I have had the same rheumatologist for a very long time…seeing him both on the NHS & privately…I am very happy with the treatment I have received, but I hear very different opinions on him from other patients.

So maybe a change of consultant would help you?

[Luludean in reply to AgedCrone]

I have tried to change . Nothing has happened no visits. …… now I’m going to hack back weeds and bushes before it rains . 🤗

[AgedCrone in reply to Luludean]

If you want to change your consultant that is your right.If you have asked for that to be arranged & have had no progress….try calling your hospital PALS line & explain the situate calmly & they should be able to see what the position is.

As with everything in the NHS atm perseverance is key.

[Luludean in reply to AgedCrone]

O !!!! I know that !! Calm and stoic!!

Thank you

[KittyJ in reply to Luludean]

Ring the clinic and ask to change, that’s what I did.

[Luludean in reply to KittyJ]

I did that ages ago Kitty and left tel message. Anyway I’ve taken up too much space on this site . Sorry

[KittyJ in reply to Luludean]

The actual rheumatology clinic, not the nurse helpline ? Strange as I’ve always got a person answering the phone. 🤷🏻‍♀️

[Luludean in reply to KittyJ]

I’ll try again Kitty. L

[Morganalefaye in reply to AgedCrone]

Where would you search to find a suitable rheumatologist privately. Do you still need a referral. I get the distinct impression that it’s been decided I have a particular type of arthritis and so further investigation is off the cards.

[Luludean in reply to Morganalefaye]

I agree with aged Crone. This site should help. Or , research the history of rheumatologists near you . If insured the company can suggest who you could see. Going private may cut down waiting time but does not guarantee better care!! I wrote from experience earlier today . Good luck.

[AW600 in reply to Morganalefaye]

You can self refer to a private rheumatologist, you don’t need to wait for your GP to write to them. Simply ring up and make yourself an appointment, then the secretary of the consultant will ask your GP for any notes if they want them. Any blood tests will be available to them as they all access the same system. I’m not sure where you live but I would just search for the closest Spire hospital and you can then read through their list of consultants and just choose one

[Luludean in reply to AW600]

I would be very careful Morgan . Check credentials and ask NRAS. Private hospitals are keen for money !! Read my earlier post if you can find it.

[KittyJ in reply to Luludean]

NRAS can’t recommend private rheumys it’s best to ask here stating your area and get recommendations from people who have seen them 😊

[Luludean in reply to KittyJ]

Pity , I could say who not to see on my area but, I probably better not.

[Bails67 in reply to Morganalefaye]

If you do a goggle search for private RA consultation in your area. I asked my GP and he referred me to a private one many years ago.

[bunnycaramel in reply to Luludean]

Unfortunately your experience is similar to a lot of people these days

[Luludean in reply to bunnycaramel]

Bunny caramel , thank you . I had major break through today ! After many months of misery I did contact PALs . Feel 10 years younger!!!! Such a warm listening response. I live in hope.

[bunnycaramel in reply to Luludean]

I'm close to calling PALS too

[Luludean in reply to bunnycaramel]

Do !!!!! I’ve done nothing for past 4: 5 years . Wound myself into total insecurity! Speaking to PAL s today restored my hope and self belief.

[AgedCrone]

If you are intending to use medical insurance, yes you do need a referral from your GP. Have you told your GP you would like a second opinion ?

Maybe maybe she/he would refer you to a different Rheumatologist at the hospital you now attend.

But if you are going ahead on your own you can check the local private hospital to see if a rheumatologist there will was see you, but you do realise they will want all the tests repeated and that can make say a £350 initial consultation charge three or four times that….

If you want to go ahead why not post on here the area you want to find a rheumy…members are often happy to give recommendations.

[012703060610]

Great link attached. The ANA titer is a really good test that can confirm autoimmune activity if all the other labs are OK. Hoping you may be able to get another referral. It took me three Rheumatologists locally to make me realize I needed deeper help. All three sent me to psych. I went, in the US, to a few of the academic centers and it all became clear quickly that I didn't just have one autoimmune disease, but several. For a year, I was simply told I was not mentally well. I still knew it wasn't that and continued seeking treatment. My treating Rheumatologist is across the country and I fly as needed. His care is worth it due to the complexity of my situation.

mountsinai.org/health-libra...

[012703060610 in reply to 012703060610]

I should also say in the US I see my Rheumatologist once a month or a minimum of 10x per year. The UK process sounds deflating. I need to travel across the country to get the care, but at least I have someone that is on my case each month. We are on a text basis. My autoimmune diagnosis has only ever been reported by 25 other patients so I push my providers really hard. One autoimmune disease is terminal so I push as hard as I need to. I have young kids that are watching their mother drift away. I often write letters to the head of clinics via certified mail here. With certification, you know they have them. If I get no response, I continue up the food chain. Most of us are too sick to fight the medical machine. However, when I got the terminal diagnosis, I put on my big girl grown up pants and started to get to the right places and apply pressure. I've always been kind of a fighter for what is right and wrong and when the balance of our health hangs on professionals that are frustrated and burned out, we are all suffering. I am so sorry for all in the UK experiencing issues getting fully localized treatment. I don't even have a GP anymore as my Rheumatologist has to know about everything.

[BoneyC]

Was it this?

nice.org.uk/guidance/qs33/c...

[Luludean in reply to BoneyC]

Yes Boney , thank you.

[Nuttyshirlz]

I know where I used to live my rhemy used to be great saw dr regularly saw nurse every 6 months then covid hit and now it’s non existent. Had so many appointments sent out and as quick as sent has quickly cancelled that’s been going on for few years. Even my Gp email them and said I need to be seen can’t contact nurses it’s switched off but I moved a month ago went to see new Gp got hospital appointment in September so hopefully different hospital might get seen

[Luludean in reply to Nuttyshirlz]

Well done! Hope you like them !