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Rheumatology Nurse

Question. At a previous hospital my husband was given the direct contact details for ‘his’ rheumatology nurse. It was great to have someone to contact if you needed advice etc.

Was this unique or a thing of the past?

He is now at a different hospital.. there’s a phone number to the rheumatology department with an answer phone. Says someone should contact you within 24 hours. Basically they don’t reply and you can leave numerous messages.

Feel frustrated that you appear to be left to get on with it....

guess it’s NHS cuts.

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I was given a number for a nurse and it is always a answer machine that leave a message on . If you are lucky they may get back to you in 24hrs . To be honest though there is only 3 nurses covering 3 different hospitals and the clinics, so in all honesty they're doing the best with what they've got . Please don't get down , I use my GP if it's medical and the rest I write down or ask in here . Sorry 💐

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Your lucky to be able to contact your GP !

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Lol it takes about three to four weeks to get an appointment in . Worse case scenario we have a drop in clinic 20 miles away if it's urgent but what do you do no GPS no nurses no money . We're all In it together 🤣🤣🤣I'm trying to find a rainbow 🌈 x

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No rheumatologists either...mine retired last august and still waiting for a replacement.

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Mine left in Jan 2016 I didn't get a replacement till May 2018 and I've seen her twice second time is when I put in the complaint . I so get their caseloads are massive and long term conditions does not get the funding but realistically this situation will get worse not better . This is not a political statement just the fact that we have an ageing population and limited funds . It's rotten but I think they try their best on what they have . 🤗

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Of course they try their best and full marks for doing so. As for funding, enough to say that the government doesn't appear to have a problem finding a few billion here and there when it suits them, and yep I guess that is a political statement! :-)

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😂😂😂👍 I wasn't brave enough

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Hi Nessa I got a number of a rheumy nurse but when I tried to phone it it was just the department and like you sometimes they phone back but most of the time they don’t. I haven’t seen the same rheumatologist twice so there is no continuity in care. I have been waiting six months in pain for a operation on my shoulder. I know they try there best but sometimes it is so frustrating and there best is just not good enough.

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I have a contact number for a rheumy nurse. It’s always an answer machine too but they do get back to you, usually within 24 hours. They used to answer the phone but not any more, cutbacks I suppose.

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Similar with how it's worked in my area for many years....leave details with answer phone before 1pm, open 3 days a week, and the nurse phones back in the afternoon. Only once can I recall the nurse not getting back to me the same day, and I've phoned the helpline a fair number of times over the last 5 years. I have been experiencing problems seeing a rheumy more recently, which is to be expected with the shortage in my health board...two at the last count or so I've heard. I'm not in any serious trouble at the mo so no big deal having to wait.

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We caterpaulted into the 21st Century and started contacting our rheumie nurses by email...it worked very well, after all often a query can be answered with either yes or no. Then all of a sudden we got an email saying from a certain date “rheumatology nurses will not be able to answer your emails”.

When I saw my rheumatology nurse I asked her why.... she said “just because” they had just been told too....no explation.

It gives them more work ..... they now have to set aside certain hours in the week to make the return phone calls...when they could be seeing patients.

Maybe the new-ish Sec State Health, could start fixing small but important things like that - rather than rushing around the world buying million £ computer systems.....probably best left to IT specialists?

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It’s sad really..

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Well it’s impossible to get an appointment with consultant, you’d think it was cheaper to provide an additional rheumy nurse. GP just says we need to ‘make fuss’ and that only people who complain get anywhere. All a bit sad... ☹️

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Ill people are not making a fuss , by asking for care. we are just asking for care.

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True...

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My rheumatology nurse is my rock. She always responds within 24 hours, and is so knowledgeable and reassuring.

That's one of the reasons that I have stayed with my unit, although I am now 90miles away.

I do know how lucky I am!!

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Well I have left 3 messages, the first being 9am yesterday... nothing. I have a friend who’s a GP ( not ours) and she’s tried contacting Rheumatology too... no response . She’s horrified how difficult it is too

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I was told I’d get a helpline number when I started biologics, but I didn’t. I’m still waiting for the biologics nurse to call me back about something as she said she would do after she’d spoken to the doctor. That was in October. 🤔

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I think part of it is that rhumatology is not a specialist area that many find appealing and attractive - both nurses and doctors. Perhaps better now when there are more effective treatments and new things going on, but generally is not seen as an exciting field. If you want tough you go for cancer or cardiology, if you want human satisfaction you go for maternity, and if you want to be able to work regular hours then stick to something dermatology. Rheumatology has too many patients, who don't die as often as they used to so the list gets ever longer, and not enough money to give everyone the treatment you would want to give them.

So I can see that it's low down the list of preferred options for young doctors, and with such a big demand in every specialism then they can choose.

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What we're really hearing is that rheumatology needs re-branding. I wonder how we could make it more appealing?

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Money?!

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Money into the system, not for individual Drs

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That is what Versus is supposed to be doing!

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It's not only rheumatologists, according to a report on my regional BBC news last night, there is also a shortage of cancer specialists. Probably a shortage in most other fields too.

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I hear cardiology is slightly oversubscribed and there are shortages in pretty much every other field.

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So agree with you . I know when I was working , the department I worked for struggled to get specialist nurses as it was considered heavy work . It is difficult to to recruit and keep staff. .

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I am a lay member of the MSK and arthritis group at the Scottish Parliament. At the quarterly meeting, held last night, a consultant rheumatologist sang the praises of being a rheumatologist , how exciting the area is mainly due to new drug treatments. Then in the next breath went on to say how Scotland has 8 long term vacancies for rheumatologist that are proving very difficult to fill.

What also transpired at the meeting is that medical students only spend a 2 week placement in rheumatology throughout their 6 year training, that's 10 days. These are the students who go onto be your GP. ( The vast majority of GPs have no further training in rheumatology throughout their GP training programme. )

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Sad...

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Indeed, very sad

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You forgot Pathology HH..patients don’t ask awkward questions.

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According to the general medical council, medics are most satisfied in:

General practice (by a long shot)

Then anesthetics, clinical radiology and ophthalmology ( the first 2 having minimal patient contact !)

The specialities with the least satisfaction are obstetrics and gynaecology, geriatrics and then at the very bottom acute and general medicine (of which I assume rheumatology is lumped within, as it does not have it's own entry)

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Things haven’t changed much in 50 years then! Although I think the GMC may be a bit out of date about GPs being very satisfied with their career. They may be getting high salaries but I don’t think they are getting much job satisfaction.

They certainly don’t want to make patients wait three weeks for an appointment and I think they’re whistling in the wind in thinking things will change any time soon.

As far as I can make out these days only a few GP’s aged between about 35 & 45 are full time...the majority of practices that I know

cannot get full-time GPs and their surgeries are staffed by newly qualified or those about to retire or in fact those who have retired and have come back to work as locums ....together with Nurse Practitioners.

Back in the dark ages when I was nursing, GP’s knew who the patient’s Rheumatology Consultant was .... & that was in a big city not a small village.....these days I find even locums who have been in the practice quite a while have never heard of my rheumatologist, whom I have been with for over 10 years so he has obviously been in the area longer than that, so their must be other of his rheumatology patients at the practice. ..but it seems not to be important information!

Hence the need to keep copies of medical notes....as if we haven’t got enough to keep track of !

I am sitting in dentist’s Waiting room.....fingers crossed no treatment needed!

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The satisfaction with medical specialities is research based from 2016 , not just GMC opinion.

My thoughts were if GPs are the most satisfied, the rest must be truly miserable in their work. But many GPs work part time and still earn a good salary (much easier to do than in hospital). I expect this plays a role in satisfaction. Locum GP work is very lucrative. I know one GP who only works around half of the year covering for GP holidays, and short term cover for practices that struggle to get replacements. And also some NHS 24 cover. He would not consider a permanent contract as he earns nearly as much for his locum work. He spends his non working half of the year travelling and skiing. The system is broken.

All the issues of austerity play there part, but poor recruitment is a big issue too. People are selected on academic qualifications rather than a desire to do the job.

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The day they stopped having SEN’s & Auxiliaries was a sad day. Not everybody who aspires to be a nurse is academically brilliant, but they are usually more of an asset on a ward than a Uni educated nurse with her eye on a management position.

As a previous President of the RCN said...we now have a breed of nurses entering the profession who are too posh to wash.

.

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Absolutely !

My friend is a prescribing nurse, I was a nurse and midwife. We were both horrified when her daughter, undertaking a 4 year nursing degree, complained that the charge nurse 'made her ' do a bed bath when she had already had her practical book signed off for bed baths (or what ever they call them now.)

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I hear many stories of people being in hospital these days & never having a full body wash if bedridden ...& when they eventually get out of bed & see the bathrooms & ask nurses to get them cleaned they are just ignored.

I remember as a student nurse washing bathroom floors with a mop until they shone & if they didn’t- Sister sent me back to do it again.

When I tell my uni educated Rheumatology nurses this - they think I am joking.

I expect a bed bath is now called something like a Patient Cleansing Experience!

In fact, I once had surgery in a Private hospital...I couldn’t stand, so I was put on a white plastic garden chair,& my nurse in white wellies & a plastic Mac hosed me down...we both laughed so much...I felt better immediately! Now that is patient care!

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One thing I never got used to was washing out the metal sputum cups before sterilisation. I can still remember gagging in the sluice, with a long row of them to clean as a very junior nurse. No gloves in those days either !

Our nurse tutor told us very early in in our training that a properly executed bed bath was the most skilled job a nurse could do. If we didn't understand why we shouldn't be nursing, but we had 3 years training ahead of us to work it out.

He would then ask when we came into college, to think of a patient we had bed bathed. What had we learned about the patient ? Their general physical state, nutrition, bladder, bowel, skin, mobility, wounds, mouth/teeth, psychological state.....only a skilled could carry out a proper bed bath.

Can you imagine that now ? !

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No!

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So agree with you x

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It’s not sexy enough discipline I guess. Unlike cardiac, paeds and oncology.

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One of my recent rhematologists was a young woman, and I asked her why she chose the speciality. Her answer was along the lines of working in a field where people were so surprised, delighted and pleased to be helped. Says a lot!

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Wow! Doesn’t it. How sad.

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It sounds as if she is in the job for all the right reasons. Keep a hold of her if you can !

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Umm.. we have added problem. My husband had acute liver failure 6 months ago and wasn’t expected to survive. This was caused by iron infusion. His iron levels were low due to blood loss during emergency tooth extraction ( abscess) a month before. Basically a major medical ‘cock up’ , but ‘unfortunately ‘ his medical records were ‘lost’. But, the problem we have now is that most rheumatology drugs effect the liver. We have been sent backwards and forwards between rheumatology and gastroenterology ( with weeks and weeks in between.). Why can’t they talk to one another? At present he’s seized up, I have to physically get him out of bed... he’s on no / little medication ( he has MCTD) . Only got codeine, which doesn’t appear to do anything. I just want to get consultants in one room and get them to talk. But... I can’t get anyone to talk to me...

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Phone the PALs at your hospital on Monday - this is awful! (Patient Advice and Liaison Service - every hospital has one)

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I contacted PALS in October. They couldn’t help and told me to make formal complaint, which I did. I had 7 page response 3 weeks ago. Full of ‘sorrys ‘ and we will learn from this. Although they believe the liver failure was caused by the iron infusion, they don’t believe he was given overdose. We did have medical negligence cover on our house insurance, but because they ‘lost’ medical notes, we cannot prove how much he was given. The solicitor refused to take the case because of this.

Feel we have been to hell and back , but we still can’t even get a response from the rheumy nurse...

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Send another letter of complaint to PALS copy in the rheumatology dept, your Gp and your MP . Ask for a consultation with your MP to discuss all of this you have nothing to lose now so go for the throat . I'm sorry for the terrible treatment your husband has had . 🤗

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I have sent response to Complaints Team. Won’t get response to the 2nd April. I’ve been busy fighting/challenging his past treatment... but I need him well too. At stage I need to fight for treatment. He was keen to get back to work, can’t see that happening. Financially, we have lost out too...

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I do so understand . I am sorry . I am in the middle of a complaint against a rheumatologist and have been referred for a second opinion. I have subsequently had a letter to say they have reviewed her findings and are looking to remove my biologic . I have never been examined by her hence the complaint . I'm now covered in hives from the new bio similar no support from any of the rheumatology team I phone up I get sent to speak to pharmacy . I'm seeing a different consultant on 11/4 until then I'm on my own but letters are ready and waiting to go to my mp and clinical commissioning board . Be strong wish you well 🤗

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Good luck! Think we all need it!

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Xx

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Stay strong.

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I am so sorry, what a nightmare. Try to keep strong and keep filling up that answerimg machine with messages.

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PALS are internal. As soon as it moves to a complaint it goes to the litigation department and legal which is why it’s longer. (Sorry, I’m an ex NHS Governance manager).

Around 12 years ago I made a huge complaint. First through PALS, then via MP. I got no joy, so I wrote an open letter to our local paper without apportioning any blame. They contacted me to run it on the front page, then it went national as the Press Agency picked it up with all the papers and national morning TV station interviews too. The hospital listened then. Making it an official complaint will make the whole thing lengthy and you may not get the result you need unfortunately.

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Hi Pop007

Very similar thing happened to me. Had blood transfusion and ended up with autoimmune hepitits which attacks the liver. I take mercaptopurine forever now. Anyhow. Took me many months of me ringing the Hepatology consultants Secretary and gastroenterologist Secretary (also have ulcerative colitis) and Rheumatology trying to get them to work together. Several letters between them I am now on bio meds with rheumy which is ok for my liver. Have cut the length of this story down a little. But the point is, keep pushing yourself. In experience PALS won't do a deal, you're better off if you can, doing it yourself.

Hope your hubby gets the answers and meds that he needs.

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I have an email address too. I just send a message. A reply comes a day or 2 later.

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I have a crisis line who work 8.30 to 5, I have only phoned a couple of times, I left a message at 4:45 on a Friday, they phoned before 5, the other time I spoke to nurse and she got a practitioner to phone back the same day . Guess I am lucky.

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Hi. My Rheumatology nurse’s phone number is saved in my phone!!! I receive the best possible care from the Rheumy team at our local hospital!!!

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I noticed an email address for my Consultants secretary on one of my letters and have used this quite a few times. She passes any query on to my consultant and then emails me back. It’s worked really well for me .

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Hi, this is my first post on here although I have been reading them for ages but I felt the need to reply. Like a lot of you, I have to call a dedicated number during office hours or leave a message out of hours.

It is not just about the funding. We need to bare in mind that it takes three years to train a general nurse then if you are lucky to find one in an interest in rheumatology and another couple of years for a specialist and then more training if you want to do biologics so its easy to see why there are so few.

Maybe I'm just cynical but rheumatology is not emotive or glamorous enough for some of today's nurses.

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Welcome !

Absolutely, workforce planning is critical to meeting the needs of patients.

I have been thinking and reading a lot lately about how gaps in health provision could be made good , without just throwing ever ending money at it. Then heard the voice piece for physios speak recently. What he said is in line with my thoughts about medics being 'at the top of the pile'. They are expensive , and either have a lot of knowledge about little , the specialists. Or have a little knowledge about a lot, the GPs.

Yet we have highly trained para medical specialists within the NHS, who cost much less and who are expert in their area. Physios being a great example.

1/5 GP visits are about muskulo skeletal problems, yet they have at best 6 weeks training in the area!

Physios have 4 years ! The patient satisfaction after seeing a physio is very high, after seeing GP for MSK problems it is very low.

Physios are trained to diagnose and treat, they do not need medical intervention.

But the NHS with some exceptions and limited self referrals, does not allow it. Physios know when to pass on a patient for medical care, and that would not be to a GP ! It would be a medical specialist ! ( it was a private physio who eventually got the ball rolling for me, by writing to my GP saying I needed referred to rheumatology, after she had been treating me for tendonitis and headaches for months).

You can have 2 and a half physios for the cost of one GP.

Similarly other paramedical staff could be trained and utilised more appropriately, but Doctors would need to accept it is not a hierarchy they work within , but a multidisciplinary team of equals with different skill sets, of which they have an important role.

Rant over!

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Excellent points 👍

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Just had registrar on phone !!! Said they are hoping to give him infusion. ( need to have more blood tests plus input from liver man)... Think it’s Rituximab ( she’s foreign and difficult to understand). We need to do some research.

Unfortunately, she also said that if it’s approved, there will be a major delay in administrating it, as they are having difficulty recruiting a specialist nurse... ☹️

So I guess we struggle on....

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