How well supported do you feel by your RA department - NRAS

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How well supported do you feel by your RA department

Sebastian247 profile image
56 Replies

Hi all.

I'm still relatively new to having RA and so am still navigating treatment and services.

if I can be frank I don't feel well supported by the hospital RA department. But as I am still new to RA and support services I wonder if my expectations are unrealistic and I don't want to be unfairly critical. I know the NHS is under extraordinary pressure.

I don't seem be getting follow up appointments when they're due, or at all unlike with other NHS services. I was due to be seen in July but received nothing yet, which seems to be the routine.

A work colleague who has had RA for years compares the local services very unfavourably with what they've received in other regions.

It seems here that the patient has to constantly chase the consultant for follow up appointments they themselves said were necessary.

So unlike with other NHS services here, I'm not feeling very well supported.

I wonder how does this compare with others experience of RA services where they are?

Appreciate any others experiences.

Best wishes.

Seb

56 Replies
Hezekiah profile image
Hezekiah

Hi Sebastian, sorry to hear about your experiences, but they are not that unusual.

Problems range from failure to diagnose, or sheer slowness of the system, to lost data/records/appointments, rulebound receptionists, fascist nursing assistants, doctors who are ignorant of your case in spite of having all the info on their computer, and don't get me started on elfin safety or GDPR......... But enough about the good things........

If you search through this site, you will find some folk who make sure they have access to their own records, keep an eye on their own blood test results, investigate and understand their condition and treatments as much as possible, keep notes and a good history, and do their best to manage their own case. So, if expecting an event and it doesn't happen, chase it. Keep track of nurse and doctor (all contacts) names and contact details, and be prepared to ring and ask, Or try visiting the surgery or other facility if required.

On the other hand, the NHS staff are often doing their best work, coping with an increasing deluge of data, test results, and essential bureaucracy and approved policies and methods, all sliced and diced to make end to end case management totally impossible, so what can you do.

Rant over. Sorry I think you got me on a bad day, but I hope there is something in this wreckage which is of value.

Hezekiah profile image
Hezekiah

PS Where in the UK are you (roughly)

Sebastian247 profile image
Sebastian247 in reply to Hezekiah

Thanks for the rant! It sounds as though my local services aren't too bad by comparison! I'm in West Cornwall.

medway-lady profile image
medway-lady

We live in extraordinary times and my RA consultant is new to the department but it was fine when my old one left some 3 years ago I opted to stay with the Registrar whom I liked. The RA nurse does ring back and so things are nearly back to normal and that is fine by me. I have said no to a F2F a couple of times as nothing was wrong and the meds were working, bloods were ok and so it seemed a waste to see someone when no need. It is a bit of a lottery but to be frank its the same with all the NHS services. My sister is still nursing at 67 not because she needs too but because the hospital needs her. Here appointments are six months apart but telephone calls are returned and the RA team is only staffed at 50% of normal staffing measures so I suppose things are very difficult. I don't know about elsewhere but I'm in Kent and have kidney issues and that is definitely back to normal and F2F every three months but of course that is a very different and probably more glamorous discipline in the NHS and better funded. No shortage of doctors, nurses and plenty of time to discuss any issues unlike RA when its a miracle if the doctor is on time and then can be a bit rushed because of the volume of people waiting. I know my sister is exhausted and what is happening when people who care are abused and underpaid, overworked and the government just ignores the situation seemingly to force people to seek private treatment. I have done just that but so many are not so lucky. As an aside my husband has just been diagnosed with cancer from blood test to consultant via CT scan, MRI and all the other tests it was just 14 days before the hormone treatment was started and radiotherapy begins next week so some of the NHS is simply wonderful.

Monkeysmum profile image
Monkeysmum in reply to medway-lady

Sorry to read about your hubbys diagnosis ML. Keeping everything crossed at this end. Big hug to you both 🤗

medway-lady profile image
medway-lady in reply to Monkeysmum

Thank you and I just think when its life threatening that the NHS is brilliant, doesn't help with people who have RA issues but if we all think of those we know or even ourselves who have had life threatening conditions and diseases treated then sometimes we just have to be a bit understanding of the difficulties the doctors and nurses face. Lack of money and too many patients ? My life was saved when I had PE's and a DVT and again with an AKI and now the CKD is superb and the treatment my husband has received has been unbelievably good. No question to trivial, no rushing and very supportive. He'll be fine and been told he'll be able to play golf during treatment in fact that was a good thing and getting undressed takes longer than being zapped. He has an assigned nurse and it was a routine NHS blood test that found the problem so another reason to be thankful of the NHS. x

Monkeysmum profile image
Monkeysmum in reply to medway-lady

I agree with your comments re the life threatening situations, has been my experience with family members as well. Sounds very positive re your hubbys treament, I’ll be thinking of you both. Xx

CripLady profile image
CripLady

When I was first diagnosed 12 years ago, I went to the ‘Early Arthritis Clinic’ quite regularly. It took a while for everything to get sorted, tests, meds etc. but I did feel ‘looked after’. I think initially my appointments were every 6 weeks. After every appointment I was given a sheet to hand to reception who then booked my next appointment. I was in Manchester.

Sebastian247 profile image
Sebastian247 in reply to CripLady

Thanks for the reply. That's the kind of support I was expecting really, certainly in the early stages whilst still trying to get the RA under control. I have had to research the illness myself and the impact and side effects of the drugs. I don't mind doing my own research but expected the consultant to spend some time explaining things, which hasn't happened so far.

Cheers.

Charlie_G profile image
Charlie_G

My experience of the NHS generally, across several different hospitals and health boards/CCGs, is that there can be massive variation in the quality of services, even within the same hospital. Without putting too fine a point on it, my experience with rheum over the last almost 3 years has been pretty pants. I constantly have to chase, the nurse specialists are friendly enough but cock up on a regular basis, appointments are few and far between compared to what you’re told, and not necessarily of help when you do get one. All of that topped off by some of the consultants not seeming to have a clue about things they really should. My diagnosis is psoriatic arthritis, rather than rheumatoid, meaning the issues are similar and the treatment path is the same, but there are some subtle differences that medics have be aware of to ensure patients get the necessary treatment. And some are just not. This is a picture mirrored in neurology. It’s a relationship with occasionally nightmarish qualities. Conversely, though, opthalmology, have been phenomenal. Cannot fault them. Similarly allergy and immunology. Paediatrics, too. It’s enough to give you whiplash, then a headache whilst trying to understand the massive disparity in care between 5 teams all based in the same hospital.

My daughter and I both have quite complex health needs and histories. I learnt early doors that obtaining proper care requires a certain amount of management and knowledge on the patient’s part, even when the service being received is good. Medics and hospital staff are human. They come in all the various flavours of person found within the general population. Some are people people, some aren’t. Some have empathy and compassion, some don’t. Some know what they’re talking about, some don’t, and some add insult to injury by being arrogant as all hell whilst getting it wrong 🤷‍♂️ But even good teams, and good clinicians, get it wrong from time to time. Things get missed or forgotten.

At the end of the day, I don’t have to like people, but I do have to trust them to be able to do their jobs. When that doesn’t happen, I’ve come to the conclusion that my choice is either to seek treatment elsewhere, which I have done before when one of us has come to, or there’s been the potential for, harm, or be what I call a polite nuisance. Which amounts to learning everything I can about my own condition, and essentially micro-managing my care. Told I’ll have an appointment in a certain month? Fortnight before that month starts, if there’s no sign, I start cheerfully nagging. If I anticipate there may be a problem with something from past experience, for example prescriptions or blood tests, I will pre-empt that and email or ring well ahead of time. I also ask them to confirm things said on the phone via email or letter. Someone criticised me once for giving them more work by doing that, but I only do it when the poor standard of care provided makes that necessary: the reality is that no one else is going to prioritise my health. If I want good care, I have to be pro-active in achieving that.

Should it be that way? Of course not. But how things should be and how they are rarely match up in the real world. People talk about the NHS being in dire straits, but many that have had chronic health problems spanning long before covid would tell you that the service was in dire straits long before now. The only difference is it’s more readily apparent and visible than it was.

Sebastian247 profile image
Sebastian247 in reply to Charlie_G

Hi Charlie. Thanks for sharing your experiences, good and bad. I too have had exceptional service recently with the ENT dept. When they say we'll see you in two months they send out appointments well in advance. They've been brilliant.

With the RA department I don't receive anything in advance and the month of the suggested appointment passes with no appointment. I'm left wondering was it deliberate and I didn't actually need to be seen, or was it a mistake and I should chase it up. It's the not knowing that upsets me.

I've also been concerned about the attitude of the RA consultant.

He totally poo pooed the suggestion my hearing loss could be related to my RA. Until the ENT consultant wrote to him explaining the link and the risk I may lose all my hearing due to the level of inflammation I was experiencing. I'm now permanently deaf in one ear.

At my last appointment he told me to strip to my underwear, which, with swollen and painful fingers, hands and feet took a while. He then examined my elbow, and told me to get dressed! I spent longer undressing and dressing than being examined. It didn't fill me with confidence.

Anyway I appreciate your thoughts and experiences.

Seb

Hezekiah profile image
Hezekiah

I reckon medway_lady, CripLady, and Charlie_G told it a lot better than I did 👏👏👏👏

AgedCrone profile image
AgedCrone

Unfortunately there just aren’t enough rheumatology doctors of any grade in the U.K.,so even before Covid, appointments & follow up checks were very hit & miss…so bluntly yes I’m sorry to say, it is unrealistic to expect nice leisurely consultations to chat about every twinge. …..but you can find ways to get listened to.

If you feel you need more hands-on treatment you could always get a private consultation with a consultant rheumatologist who could then transfer you to his NHS list, but you could also pop back to see him privately if you felt the need.

Your friend is very right that treatment differs greatly in areas.

Affluent areas often have more rheumatologists because the doctors want to live there…especially if the hospital is considered prestigious for their career.

It is helpful when you do manage to get an appointment to have written down any particular symptoms that are bothering you, & to be quite determined in getting the doctor you are seeing to address them & not just feel a few joints & show you the door.

You should make good use of your rheumy nurses …they are often more practical in helping you settle on a drug, or know if you need to change to a different one…& it’s often easier to get continuity with them & not have to start over like you do seeing a different doctor each time.

But don’t despair. ….you say you are newly diagnosed…..so do try to be patient because often things start to fall into place quite suddenly……but with RA most things take time..,however most of us get to a better place eventually….I do hope your treatment kicks in very soon.

MadBunny profile image
MadBunny

I was ok until March last year - I saw someone every 6 months , alternating between the Consultant and the biologics nurse. The support I had was excellent. Sadly my appointment was cancelled last November and I'm still waiting for it to be rescheduled.I was told not to contact them as I was in the system. I have my bloods done every 12 weeks but getting the results is hit and miss and as I havent heard anything I assume all is ok -they keep prescribing my meds. In fairness to the nurse, she did speak to me about having my covid jabs . I try not to complain as I know there are many problems in the NHS.

Deeb1764 profile image
Deeb1764

I am lucky I have an email system at our RA dept. so if I have an issue I send what's going on or photos and I have to say I get a response sometimes next day or email back saying don't worry. If you can see if they have this system, as I know in my first year so much was going on and it was overwhelming it was good to have the email back up. I still use and they are still doing the response to it.

Fruitandnutcase profile image
Fruitandnutcase

I can’t say I feel all that well supported by my rheumatology dept. I was diagnosed back in 2015. I was ‘fast tracked’ by my doctor but the department was busy and it took longer than the recommended time - they did contact me during the wait though.Save then I’ve been seen once a year - more or less. I wasn’t seen or spoken to at all during covid and was only seen because I contacted them.

I’m taking 200 ml hydroxychloroquine every day and feel I ought to be contacted by them for an annual check up.

I have only had my hands x-rayed once in all that time and only had one lot of blood tests done. I have never had an eye test or an OCT scan done by the hospital although that is important when you take hydroxychloroquine as any damage done is irreversible. I have both eyes and scans done privately and so far things are ok.

Have never seen my named consultant - just a string of temporary doctors and in all that time I have only seen one person twice in a row.

I have never had a rheumatology nurse and I don’t know anything about making contact with one.

So listening to the care some other people are getting I am not sure I’m all that well supported - on the other hand though I suppose it could be worse and I’m assuming the lack of care is because on a scale of things I’m not all that badly affected. Who knows?

AgedCrone profile image
AgedCrone in reply to Fruitandnutcase

If you call your rheumatology department they will tell you how to contact the rheumy nurses.I have found half the rheumy nurses at my NHS hospital have not returned after been transferred to Covid duty…so if I really need help…I now resort to seeing my rheumy privately. Thankfully he has spoken to a Biologics nurse & if my bloods are all OK I am getting an infusion next month…just hope it works this time!

Fruitandnutcase profile image
Fruitandnutcase in reply to AgedCrone

Fingers crossed for you 🤞

I’m not bothered about not seeing anyone, I’m in the fortunate position of not having any real problems - it’s more that when I actually think about it I don’t think I could ever say I feel supported and I would hope that people less fortunate than I am feel more cared for.

For a start I wouldn’t have known about rheumy nurses if I hadn’t read about them on here. It’s not that I expected a ‘guided tour’ of the department or special treatment but it might have been nice to know what was what.

AgedCrone profile image
AgedCrone in reply to Fruitandnutcase

That is usually just about my attitude …but since I had so many side effects from the Covid vaccinations…I am now being reminded of all the symptoms I had 20+ years ago when I was first diagnosed…silly me thought I was all set on Rtx…but 7 months after a failed infusion …due I’m sure to having it too close to a vaccination ….here I am with all the aches & pains I had forgotten about creeping back…,plus tinnitus , thyroid problems, possible carpal tunnel surgery & a vertebrae fracture that isn’t healing….so I gave in & saw my rheumy privately….who promptly found even more problems.

So…..Ya Boo Sucks….. off for more blood tests …..& I decided I might as well have what treatment I can…..whilst I can still drive to the hospital 😂.

I reckon lots with much more serious diseases are worse off than me..so might as well grin & bear it…..& hope an infusion next month will work its usual magic.

Sebastian247 profile image
Sebastian247 in reply to AgedCrone

I'm so sorry to hear your RA symptoms have worsened recently.

I was interested in your comment about the side effects of Covid vaccines.

My symptoms of RA started 3 days after I had the first vaccine dose. Initially my RA consultant was happy to state it was a reaction to the vaccine.

But once it became apparent the RA was permanent he was more cagey about confirming a link between the onset of my RA and the vaccine.

I wonder why, and if it's more common a reaction than people are aware of?

Hope you improve after the infusion.

Seb

AgedCrone profile image
AgedCrone in reply to Sebastian247

Thank you for your kind wishes Seb.

Yes I do think reactions to the Covid vaccinations are a lot more prevalent than is being admitted.

I really do believe the truth is ….the medics don’t know. I trust my Rheumatologist - I’ve been with him for 15 years and he doesn’t pull his punches and he says he really doesn’t understand why I had the reactions I did.

I have been told both my hearing & my sight have deteriorated much faster than my audiologist & my ophthalmologist would have thought normal for me.

I had loss of vision in one eye & seem to have developed Tinnitus since the first two AZ vaccinations….but I didn’t get any blood, eye or hearing tests until I saw my rheumy privately…..& that was three weeks later….my GP didn’t want to know.

One suggestion was I had Labrynthitis….which I have had 3 or 4 times……but when I tried to explain to the anonymous GP who called me …that the symptoms were completely different….he didn’t want to listen.

But life goes on doesn’t it…now I just fervently hope I can get back on track after a Rtx infusion.

Hope your medication kicks in PDQ!

Fruitandnutcase profile image
Fruitandnutcase in reply to Sebastian247

My husband got unwell not long after his covid vaccine - the GP said it was a reaction to the vaccine. He was really poorly, constantly sick and so itchy he was scrubbing his skin with a nail brush.

Fortunately he finally managed via an on call doctor - who called him back at 10.00 on a Friday night - telling him she was worried about the itch - sign of liver problems - and telling him get blood tests - unfortunately that didn’t happen until the Monday morning by which time he looked vaguely yellow and lay there looking like a corpse.

The next morning a GP called and said the hospital wanted him in right away. It turned out he had a liver infection, an infected pancreas and a gall bladder infection - he ended up in hospital on an IV drip for ten days. He was really ill. With hindsight I should have taken him to A&E which is what he’s been told to do if it starts up again - he is now one of the zillions of people waiting for a gall bladder operation.

Fruitandnutcase profile image
Fruitandnutcase in reply to AgedCrone

That’s a real bummer isn’t it that all your nasty old long-forgotten symptoms have decided to pop back and see you again and from the sound of it brought a few of their friends.Hope the infusion works this time. Good luck with it all.

bpeal1 profile image
bpeal1

I think services vary greatly across the country. My rheumatology department are amazing! Occasionally I have to chase up routine appointments but that’s usually an issue with the central booking team rather than the department. My rheumatologist is extremely caring and listens to me. The nurse helpline returns calls within a few hours and the rheumatology secretaries reply to emails very quickly too, and are always willing to help. As an example a few weeks ago I had a massive flare the weekend before going on holiday. I phoned the helpline Monday morning explaining that I was flaring badly and going on holiday very early Thursday morning and they squeezed me into their nurses clinic the next day so I could have a steroid injection before going away.

helenlw7 profile image
helenlw7

So sort to hear of your issues with your rheumatology department. I think it’s very much a postcode lottery. I was diagnosed in 2004 and after my first consultation with a rheumatologist, I saw a rheumatology nurse every two weeks until my condition stabilised. I had the same consultant for about 15 years, he was a lovely man. I now have a lady rheumatologist who is equally nice. I have appointments every 3-6 months and have never had to chase appointments, and she’s picked up on other issues from regular blood tests and has got me appointments with a liver, osteoporosis and orthopaedic drs.

Fra22-57 profile image
Fra22-57

Three of my conditions are dealt with by my rheumatologist.I can thank him that he diagnosed them but I don’t class him as good.I was in hospital after an event brought on by a hospital department telling me not to take medication evening n that morning before procedure.I collapse in waiting room ,ended up in hospital a month and sending me then unable to walk.In 2011 he diagnosed me with fibromyalgia then year later also rheumatoid arthritis then 2015 cerebral antiphospholipid syndrome which is sticky blood.At that time I began walking with trips n jerky movements but gradually got ok but this hospital incident sent me into that again.The different wards and staff hadn’t a clue why or what was happening.This particular neurologist just kept wanting to discharge me and I refused as I couldn’t walk.My rheumatologist admitted to me and my husband that he himself was useless for me.I asked to be sent elsewhere.My husband had to buy a wheelchair to take me home and wait these appointments which never materialised I rang hospital departments and there wasn’t appointments and said I wasn’t a patient so I complained to PALS and my rheumatologist got accused of neglect and wasn’t very pleased.He saw me and agreed to refer me to a rheumatologist in London.They were amazing and told me so much and even got my own rheumatologist to try another biologic on me for my RA which worked instead of writing me off like other man.After few years I was sent back to old rheumatologist.Only sees me once a year,never examines me just looks at my 3 monthly blood tests.In fact he doesn’t even look at me but just looks at his computer screen n then talks into his dictaphone.I chat while he is at this and tell him about how I am doing or not doing but he ignores then writes loads of stuff that I hadn’t said to my own gp which I get a copy of.last appointment was a phone one saying he would see me face to face in 3 months.still waiting.Yes I know I could go elsewhere but not around where I live as he is head of department plus in next authority town.When rheumatologist referred me to London hospital they couldn’t treat me but only advise my rheumatologist.I was still tied to him and when he wanted me back they said they couldn’t see me anymore as he sent me there for his opinion which was actually opposite as I asked to be referred.Wish my rheumatologist would just retire really so someone else would treat me

That’s my rant😅

KittyJ profile image
KittyJ in reply to Fra22-57

You are entitled to ask to see a different rheumy if you are unhappy with the one you have, there must be others at the same hospital?

Fra22-57 profile image
Fra22-57 in reply to KittyJ

There is another one but my rheumatologist is head of department.he will soon be retiring so hopefully I should be able to see the other one

Chris_O profile image
Chris_O

Hi Sebastian.I learned very quickly when I started with RA that you really have to take control of your treatment. None other than you will take an active interest in you and your symptoms. Take action when you feel that something is not working or you need to discuss something. Unfortunately the saying that whoever shouts the loudest gets the attention, is very true.

I live in NE Wales, the NHS here is inconsistent, but not terrible. I keep my own records of treatments / medications / people I have seen. Don’t be afraid to complain if necessary. Best of luck with your RA journey.

Chris_0

Maureengibson profile image
Maureengibson

I have ankylosing spondylitis as opposed to RA. I can’t complain really, at the start of 2021 I developed a severe flare and had an urgent appointment and MRI of my spine within 2 weeks, to see if my biologic needed changing. I also developed shortness of breath, which my GP ordered an urgent high resolution CT, that initially diagnosed pulmonary fibrosis. My rheumatologist has monitored me regularly throughout the pandemic. Although last had a phone consultation in December and said he wanted a F2F in 6 months. So should have been seen in June but have heard nothing. I’m fully aware this isn’t down to the rheumatology team, but central bookings, who control appointments. I personally don’t mind, if I have an issue I phone the nurses and they generally call back within 24hrs. I see it that if I’m stable, they would be better using that slot for one of the many new patients waiting for their first appointment for a diagnosis and treatment. I also see endocrinology in London, and had a phone consultation booked for today, that has been postponed till May next year. Again I don’t mind, I email if I have an issue, and my endocrinologist will either call or email back to answer my concerns. Rheumatology was already struggling pre covid, with my Trust outsourcing to a private service, patients who were stable and not on biologics or complex. I can understand, as unlike orthopaedics where your on their books till you’ve had follow ups following surgery, patients are generally under rheumatologists for life. So their list keeps getting longer. In Belfast it is an 8yr wait for a routine rheumatology appointment, and 7yrs for urgent. That is just absurd.

So all I can suggest is if you feel you need reviewing phone your consultants secretary, who are usually more than happy to organise an appointment for you. If you don’t contact them, they assume your stable. As I say it’s central booking that controls appointments and specialists have very little say in who is seen when.

I was diagnosed at the start of the covid pandemic so I don't have any reference to say how covid impacted my hospitals rheumatology department but mine have been really disappointing.

From diagnosis until now 2 ish years later they would much rather hand you a leaflet than spend 2 minutes actually telling you what inflammatory arthritis is. Side effects of any medication (apart from infection risk) have never really been talked about in length either.

I had a long time waiting for any medication to work for me and experienced terrible head, ear and jaw pain which was dismissed as fybromyalgia by the rheumatologist, definitely not due to my arthritis;I paid privately to see an ENT who said yes definitely inflammatory arthritis, had MRI done to confirm which lead to needing a biopsy due to abnormal MRI and it was found to be inflammation due to my arthritis. My rheumatologist has absolutely no interest a delving deeper, had not a jot of interest in helping simply said ask your GP to be referred to ENT. I was in so much pain and it was absolutely theor remit, private Consultant was really disappointed with them.

Now I read up, I chase things myself and if I have questions I ask. My departments aim is for me to see my consultant once a year and nurse once a year at 6 month intervals with me organising my blood tests inbetween. For someone who I still class myself as newly diagnosed I dont think this is enough.

I make use of the email line they have , if you have a genuine concern it pays to as Charlie mentions be a polite nuisance. If you take the stance of "they're all so busy" you'll be forgotten about. Obviously I'm only talking about legitimate concerns , in the early days of getting diagnosed and finding a drug that works its really really tough.

Revise , educate yourself on your condition and challenge the medics of you feel you aren't being listened to.

I'm also in the south West but nor as far as Cornwall

I am aware it times I sound quite militant about things but I've found being quiet gets you nowhere.😁

Akaka profile image
Akaka in reply to Marionfromhappydays

I agree, I am also newly diagnosed in the South West. I waited 8 months to see a consultant on having a f2f about 4 months prior to lockdown and told she didn’t think I had RA but changed her mind after seeing an ultrasound on my wrists. She gave me the news over the phone said she wanted me to take methotrexate, I asked her what other medication was available and asked to have information on it before I started to take anything- much to her surprise. After that was chaos with telephone calls that never happened, random emails, forms sent with other peoples names on etc etc. I was told if I took Leflunomide and I caught Covid I might die!!! It was bizarre. I’ve now learnt to politely pester!I’ve changed trusts albeit it’s further to travel but still not seen a consultant. A registrar injected my wrists after 6 months of agony wanted to add leflunomide to my meds. When I asked if he thought that would help in his opinion he said no! Also the hand therapy lady said she didn’t think the meds would help. So far they are right.

It’s a weird world we are living in…

CripLady profile image
CripLady in reply to Marionfromhappydays

It took 2 years for my meds to work ‘properly’ and another 2 to get back on my feet. I think that’s about the severity of the illness. I had rapid onset and was virtually immobile for 2 years. I am not negating your experiences by any means. I too have Fibro and RA, and I think having both makes things worse, but that connection doesn’t seem to be made by others 🙄. I hope you continue gradually getting better. I’m 12 years in now, and have finally got used to ‘pace and rest’…. And am mighty relieved I don’t have to go to work. The journey getting here was a tough one though.

Marionfromhappydays profile image
Marionfromhappydays in reply to CripLady

Thank you xx

Sheila_G profile image
Sheila_G

I can't really compare my treatment at the start as it is 20 years ago and the NHS was in a very different place then. I think the waiting times, the lack of communication, the unsatisfactory treatment in certain areas across the board is due lack of staff, lack of funding, lack of proper training etc. Everyone seems to be leaving a sinking ship which doesn't help. We are in very sad and difficult times. I still have only good experiences of any treatment and appointments I and my husband have had but I have many friends who have had horrendous, unacceptable experiences which have caused, in themselves, very serious consequences. My hospital isn't too bad but the hospital 10 miles away is a nightmare. I don't know how we can get out of this mire but I do know that the NHS at its best is a gift we can't afford to give away. I am afraid Sebastian that is how things are now and to be honest, July is only last month, it isn't a long time. It is also a postcode lottery. We are very fortunate in that we have three, if not four now, Rheumatologists and a great specialist team. I hope you hear something soon.

BoneyC profile image
BoneyC

Rheumatology Services have declined since I was dx in 1971. I used to have regular appointments, 6 monthly, 9 monthly or annually at a small local hospital. Basic checks would be carried out at each appointment by a nurse (BP, urine, weight etc.), prior to seeing the rheumatologist (same guy until he retired). He knew me very well.

After his retirement, a younger rheumatologist took his position but after a few years said he wasn't coming out from the big hospital to the smaller one, but I could transfer to seeing him at the big hospital which I did. However, this is when things went downhill. I was put with any rheumatologist/trainee doctor and there has been no continuity of care, they didn't have time to read notes and they all have different ideas about treatments etc. No basic checks are ever carried out at the big hospital, it's very difficult to find parking and I wonder why I bother to attend.

I asked to transfer back to the smaller hospital but it is now under a different hospital. Problem is I haven't seen a rheumatologist in 3 years, only phone calls during Covid and the last time I spoke with a nurse in July she said I must see the rheumatologist before I ask to transfer. Still waiting for the appointment which I suspect will be a long wait.

The hospital I attend is paperless and has an online messaging service - worth asking if yours has as it makes it easier than phoning.

Chockyuk profile image
Chockyuk

Morning 👋

I’m sorry to hear you don’t feel well supported, especially if you’re new to RA, it’s pretty poor.

I have to say my Consultant in particular is amazing (I’m in the West Herts authority).

We used to have two Rheumatology Nurses, but I was told they had both left during lockdown 🤔

But I have had wonderful treatment, lots of F2F, my Consultant gives me the option of over the phone, or if I want to see her in person, that’s alright too. Whenever I’ve had a flare, she will overbook her clinic and I’m in to see her that week and I usually have a steroid jab and she looks at reviewing my medication.

Recently I phoned the helpline to say I was feeling very fatigued after starting my new meds and my Consultant rang me back in just two hours to give me advice.

The nurses at the outpatient clinic are great too, I’ve been offered tea, water etc, they are always checking to see if you’re ok. Unheard of really I would say for the NHS. My mother in law had cancer and I’d say she was treated terribly by two central London hospitals, so I’m very grateful for the excellent care I receive.

X

CagneysMum profile image
CagneysMum

Hi Sebastian.

I live in Staffordshire.

I was unhappy with the consultant my GP referred me to 3-4 years ago for an initial consultation so I got on the internet and found a rheumatologist who practiced both privately and with NHS, who was involved in trialing new treatments and drugs - so I assumed more switched on and continuing to learn within his field of expertise.

I got a private (paid for) consultation within a week and then started treatment straight away as an NHS patient. In fact he encouraged me to move across to his NHS practice because he said my case was complex and he had more facilities at his NHS hospital than the private one. It still took 18 -24 months to find the right combination of drugs to get my RA under full control, but I don’t think that’s unusual. Knowing what I know now … I would probably have pushed sooner to try different solutions. The downside is that he is very much in demand as a consultant so these days I’m more likely to see one of his team than him … but if I felt that was a problem for me I’d be shouting loudly. So far it’s worked ok.

Appointments are not so well coordinated since covid struck but I’m doing ok so it’s not been an issue for me. I have access to a rheumatology nurse support line 9-12 (Mon-Fri) who are good at getting back to you - pre covid it was available 9-5. I put myself in charge of monitoring my bloods so I go to the blood unit at my local hospital every two months (to begin with this was monthly) … wait a couple of days and then phone the nursing help line for them to send me a copy of my blood results which I monitor closely. I am soon to have my first f2f review since covid … I had a telephone review 12 moths ago where I said my RA had been well controlled for more than 6 months so I’d like to try reducing my methotrexate dose from 20mg to15 (I also take hydroxychloroquin and s biologic). They agreed and this has worked well so I’m hoping to discuss further changes when I meet f2f.

My advice is to just keep on top of it all and make sure you’re in the driving seat supported by the experts around you. It’s more important to you than anyone else and the NHS is under immense pressure so just be active in the process. Good luck 👍👍

cyberbarn profile image
cyberbarn

I initially saw a rheumatologist a few years before covid. The experience was so poor that I ended up making a formal complaint and asking for a second opinion. That took over a year to sort out, plus many months waiting for the second opinion appointment. Then covid kicked in. Although my current rheumatologist is a nicer person, the service is just as bad. No follow up appointments arranged, not listening to the patient, refusing to do blood tests. Oh, the blood tests! Can't have them done at the hospital where the appointment is, have to go to your GP. But then the GP refuses to give out the results because secondary care requested them, and secondary care refuses to give them out because they were done at the GP surgery. Patient caught in the middle!

The nurses and their advice line is about as useless as a chocolate teapot for advice, and there is not a hint of personalised care or shared decision making. And this area is a wealthy rural contiguous CCG/ICS with no problem attracting doctors.

I am an Expert by Experience with one of the trusts in our area and I sit on the Personalised Care Strategy Board and several other workgroups and boards in our ICS area. One of the reasons why I became an Expert by Experience and do this sort of volunteer work (I am also a PPG member) is because I wanted to get involved in working with the rheumatology and physiotherapy services in our area to bring the patient voice to the quality improvement table.

I have been involved in all sorts of exciting things, but I am still waiting for rheumatology and physio to start working with patients to improve their services. in the mean time I still haven't had control for my symptoms, diagnosis has been vague, drug reactions are played down, and I keep getting told 'there is nothing wrong with you, you have good range of movement' by both physios and rheumatologists. Well, of course I do, I am a women and I have a hypermobility syndrome!

Yep, rheumatology is definitely one of those postcode lotteries!

Hezekiah profile image
Hezekiah in reply to cyberbarn

Interesting to hear about your Catch 22 situation with regard to blood test results. "the GP refuses to give out the results because secondary care requested them, and secondary care refuses to give them out because they were done at the GP surgery. Patient caught in the middle!" Crazy and outrageous. Have you had any joy in resolving the situation yet? Can your PALS or MP help?

cyberbarn profile image
cyberbarn in reply to Hezekiah

In this particular case I needed to have the results before having the next blood test, and the nurse do the blood test said, 'that is ridiculous, here, I will print them off for you.' Basically, the GP and consultants were both being lazy.

There is a system called ICE in our area where blood test results go which the GPs and secondary care can access, but sadly the patients can't.

This and many other experiences get fed directly to the patient experience teams which I am part of, so PALS are very aware of the problems, as are the ICS patient experience team. I am also a member of the GP surgery's PPG so it gets fed back there too.

rmros profile image
rmros

Not at all, in short. The problems I have are not about staffing levels or workload or underfunding - though I accept these are problems too - they are down to arrogant consultants, and support staff who see patients as a nuisance. I've witnessed years of it and I'm quite convinced. I've been kind, understanding, patient. I've had no such respect in return.

Hezekiah profile image
Hezekiah in reply to rmros

The consultants forget we pay their salaries

Mmrr profile image
Mmrr in reply to Hezekiah

And if trained in the UK have paid for their training too.

Mmrr profile image
Mmrr

My experience mirrors much of what has been said above, so I won't go through it all again in detail...just some headlines....but I could write a book on my RA experiences. Most negative.

Some of my biggest issues are not being believed about how ill I felt when I initially presented to my GP, there were many months of delays in referring and then she only referred me to rheumatology after a private physio whom I saw, contacted her and said he thought a rheumatology referral was required.

Then months of waiting to be seen by rheumatology , not being believed again ....constantly being offered antidepressants and sleeping tablets.

My symptoms don't fit a normal pattern, whatever that is, therefore I must be making it up ?

I requested to be seen by a clinical psychologist...waited a year....was seen...discharged after 4/6 appointments....as she thought I was coping well and not depressed, sleeping ok. Then rheumatology listened .... repeat MRIs showed tenosynovitis and bone erosions and I was changed to biologics.

Then a good service for around a year, as I was doing ok, I didn't bother them too much.

Meds now now not working again, my rheumatologist could not be less interested, so I went for a private consultation, who confirmed much of what I thought about myself ......and I'm changing rheumatologist back to the NHS....a long wait.

Overall a really poor service by my GP and the rheumatology department. I've found them self absorbed, arrogant and patient blaming. They have continually missed what I now know to be signs and symptoms that should have recognised.

Contrast to the neurosurgeons I've seen and had surgery from in the same time frame...they have been excellent, compassionate and knowledgeable. I can't speak highly enough of them. Two of the best Scotland has to offer.

Neurologist, similar.

Endocrinologists...the same, they listen, great follow ups.

Respiratory consultant excellent.

Hand surgeon excellent.

I've now changed GP practice and am very happy with the new one.

My analysis....there is a poor culture in many rheumatology departments, a blame culture. Are they busy ? Yes ...they are rushed off their feet. But that does not explain the poor care that many of us experience, poor care results in repeated contacts by patients and is therefore more time consuming. Do it right, do it once, works best .....and listen to your patient.

I said to my rheumatologist that the neurosurgeon respectfully said he thought that some of my post surgical issues where inflammatory related and I should speak her ...he would write to her too...her comment....

Quote: What does he know ? He is only a neurosurgeon.

She then refused to consider or even examine me and my back, hip and pelvic issues.

As said, I'm now changing consultants.

Sebastian247 profile image
Sebastian247

I just wanted to thank everyone for sharing their experiences of RA services. Obviously it's a mixed picture, which isn't a surprise.

My takeaway from your comments is that I need to proactively manage my own health condition and get better informed (which is a good idea anyway) and be prepared to push (such as getting appointments) to be heard and seen.

It seems RA departments don't operate in the same way as many other NHS services. That's ok, forewarned is forearmed.

I certainly feel better informed and prepared thanks to you all sharing your experiences.

I hope you all get the support and help you need to improve and be well.

Many thanks and best wishes.

Seb.

CripLady profile image
CripLady

I remember being told by my rheumatology nurse, that being proactive is the way to go. We are the connection between any services we need/ use, so we need to be ‘in charge’ of things. Keeping a book / folder with everything in, and chasing things up as and when needed is very useful. I sent off for several million brochures etc from NRAS when I was first diagnosed. Being better informed of my condition and the various processes helped enormously. It helps with your mental wellbeing too, as you are taking back some control. The only thing I would add is to get some mental health support, which I strongly believe should be offered to everyone diagnosed with a chronic illness; this is life-changing stuff. Your GP can refer you to IAPTS, who do individual stuff ,but also do a ‘living with chronic illness’ course.

WalkerintheLakes profile image
WalkerintheLakes

Hi there,

I am seronegative and 59 years old. I was diagnosed in 2006. My experience has been that I have had to work at getting the right treatment and response. When I moved a while ago after having got my last rheumatology contacts listening to me and my experience and requirements I choose a hospital with a large rheumatology department and good reviews. I often get on better with the rheumatology nurses and they and my GP practice are very good at regular appointments and annual reviews.

I am very well on my methotrexate treatment which I have had since 2006. When my symptoms started a consultant gave me a steroid injection and now if I have an increase in my stiffness etc (it happens after illness or injury) I ask for the same injection and that gets things back under control swiftly. I ask for this even when I have been at hospitals/ NHS regions that don't give an injection as standard. I also have it setup now so that the GP can give me an injection. I have probably had four in the last 16 years since getting RA.

I put effort into being proactive about my treatment and knowledge and I listen to my body and tell the nurse/consultant how it effects me.

On the positive side I run and walk lots in the Fells where I live, so I hope with your RA team you can get to a place where you get an optimum treatment and good relationship to keep on top of and suppress the symptoms.

All the best,

S

Sebastian247 profile image
Sebastian247 in reply to WalkerintheLakes

Thanks for that S. It is really helpful.

I'm also seronegative, and 59, but diagnosed in 2021. I'm now on MTX increased to 20mg six weeks ago, and signs are now it might be helping.

I used to be physically active before, walking, rock climbing, surfing (living in Cornwall). That's all stopped since RA started.

Could I ask if, when you are well, you are fully back to normal and can do all that you did before RA?

I'm desperate to return to physical activity, but not sure if that's realistic or possible.

My last blood tests showed CRP was normal (first time since the RA started) and my joint pain is virtually gone.

But if I do anything physical (like gardening) my wrists hurt a little and my hands and fingers feel a bit stiff (but still better than before).

I don't know if I'm over doing it, too much too soon, or I need more than the MTX to be totally normal? Or is this my new normal?

Just wondered if you have any insights you could share that might guide me.

Cheers.

Seb

WalkerintheLakes profile image
WalkerintheLakes in reply to Sebastian247

Hi Seb,

For me the steroid injection by a consultant really started getting my RA under control at the start - I literally felt improvements daily - and then went straight on MTX at 15mg tablets and now I take MTX 20mg in injection form.

I am pleased to say that after treatment I went back to running and walking fine. I think I was diagnosed in about the April and then running in Lanzarote that Xmas. I even did an alpine marathon in Davos since diagnosis and other races. I happily walk 12 miles plus up over fells and rough paths and I run frequently currently training for 14km part off road terrain and hilly.

For me there are therefore no limits currently although things like gardening will make my hands ache and clapping lots! I try to keep as fit as possible as this will help support the weak areas (that is the same for any condition) and I make sure if the RA returns (ie the symptoms flare up and the MTX does not keep under control) that I get the steroid treatment to bring the inflammation back under control swiftly.

I don't follow just the numbers they quote in the blood results - I go on what I feel like and when I know the RA has started to build up again. My two main clear flare ups were when I got food poisoning and when I sprained my ankle.

I would say stay positive, keep on top of your condition and remember that you can do very well.

Susan

Sebastian247 profile image
Sebastian247 in reply to WalkerintheLakes

Thanks Susan. I'm so impressed by what you're able to achieve. Certainly inspires me to get fit again and not to give up.

One more question if you don't mind? I take 20mg orally and usually feel very fatigued for a day, a couple of days after. For a day I struggle to move.

Do you experience this fatigue from MTX, or do you think having MTX via injection helps prevent it?

I've been thinking about Asking if I could switch to injections if it might help with the fatigue.

I really appreciate you sharing your experiences.

Best wishes.

Seb

WalkerintheLakes profile image
WalkerintheLakes in reply to Sebastian247

Hi Seb,

I must have been very lucky as I don't get fatigued taking MTX and never have had a bad reaction or response. I must admit psychologically my body says "ugh" why are you taking these tablets/doing these injections but I know this is just psychological. The injections were suggested to me as being a more effective way to take the dose and because I started to not enjoy taking the tablets.

I am a mega positive person and I just try to keep on top of it all. Tiredness is a big issue with RA and I also had underactive thyroid diagnosed at the same time. I have fought the 'down' feelings and tiredness as I know it is biochemical - I am am not down it is just the biochemical balance isn't right. This is easy to say and harder to do.

Being honest it has taken me a while to adjust to the fact I have a long-term condition and how to manage it, and me. But you need to use the energy, the will and the underlying fitness you have to mitigate RA as much as possible. Allow yourself time to come to terms with it but expect and work towards the best outcomes.

More than happy to chat on the phone or FB sometime if you want to.

Take care,

WitL

Sebastian247 profile image
Sebastian247 in reply to WalkerintheLakes

Hi WitL.

Thanks so much for sharing. Hearing how you manage your RA is so inspiring. Your positivity really does shine through.

I'm kind of half in denial about having it and still secretly think it'll just go away in the end. I know I've a long way to go, in so many ways.

I think I'd find it really helpful to talk on the phone, If you would be prepared to. I'm not on FB.

Thanks again. I really appreciate it.

Seb

LancashireRachel profile image
LancashireRachel

I looked up West Cornwall waiting times for referral from the GP and it's 17 weeks. I'm in Blackpool's catchment area and that figure is 46 weeks. So you're certainly not the worst. Keep chasing! As there's usually doubters here telling me how wonderful the NHS is I've attached a screenshot. In fact the upbeat comments about how I can't be right all the time mean I find this site no support and rarely visit.

Blackpool Victoria waits
Sebastian247 profile image
Sebastian247 in reply to LancashireRachel

46 weeks is crazy. Especially if you're in pain with the condition. By comparison 17 weeks wait down here is excellent. I waited 3 months for a private appointment, once I'd been referred and that seemed very bad considering how much pain I was in.

I have been seen by the consultant rheumatologist. Initially I saw him privately last year as it was quicker than through the NHS. After I saw him a second time he told me I needed to see him as an NHS patient to give me access to a full range of NHS help and services. So I switched to the NHS, but he's never referred me for any other help.

I've seen him again once on the NHS, way overdue the follow up he himself set. But only after he was chased by another consultant (ENT), which resulted in my being switched to methotrexate.

I'm way overdue a further follow up appointment, again the consultant set the timescale (to check how I'm responding to the MTX). So it seems there's a pattern of not just overdue appointments but not arranging appointments at all, and patients have to chase them and compete to be seen.

Its pretty poor and unlike other NHS departments I've accessed. I can chase them, and eventually I will. But when you don't know this is how it works and you're thinking I don't want to be pushy because the NHS is so stretched, patients may end up waiting many, many months for an appointment the department is never going to arrange without the patient chasing it. It's as much about knowing how they operate.

Anyway I'm clearly much better off than some. I hope you do get the help you need and deserve and aren't waiting too much longer.

Seb

LancashireRachel profile image
LancashireRachel

There's a reason for why initial appointments are often better waiting times than follow up. The waiting times aren't measured and reported to the government/cqc.You should have numbers for appointments, the rheumatology nurse and your consultant's secretary. You should also know where to ring if you're having a flare. Here we now have to go to A&E and get admitted to wards based on Covid status. I was on the diabetes ward for my RA earlier this year. No-one told me they'd changed their system either.

Being on methotrexate is good becase your GP practice will be monitoring your blood results and they will help you get earlier appointments if you really need them.

Do ask for your folic acid levels to be checked occasionally and always take the supplement and read up the deficiency symptoms. That was why I ended up in A&E.

Hope you get good treatment from this point on. Your hospital is rated good overall so you've a good chance. Mine's rated inadequate. Good luck.

cqc.org.uk/location/REF01/i...

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