What's up with the NHS?: I saw my rheumatologist at... - PMRGCAuk

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What's up with the NHS?

Marijo1951
Marijo1951

I saw my rheumatologist at the Royal Free Hospital in June and was given a new appointment for 24th September - a very reasonable 3 month interval. Yesterday I received a letter saying that appointment had been cancelled and was given a new one for 25th March 2019, so 9 months after my last appointment. I thought at least I could check online every day to see if there was a cancellation I could take, but have just found out that my appointment has been taken off the NHS e-referrals system and I have to contact the hospital direct. I find all this very unsatisfactory, especially as I want my pred dosage to be monitored by somebody who is presumably expert. I'm going to make an appointment to see my GP in September to get what advice I can. It's very galling that I could see my rheumatologist privately at one of three clinics she attends each week, but I can't really afford the fee and anyway that would be against the spirit of the NHS which I support wholeheartedly in principle.

61 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Short answer is funding, or rather lack of it! Too many patients, not enough staff.

I agree with you that it’s galling that if you can afford to pay you can get an appointment within days, but unfortunately that’s the way it is.

Isn’t it depressing? The present administration is not ideologically wedded to our NHS I fear.

PMRpro
PMRproAmbassador

What's up with the NHS? It is short of staff for various reasons so there are too many patients and not enough staff to deal with them.

In the context of rheumatology there are increasing numbers of patients because of our rapidly aging population and at the same time the number of specialists is falling - partly because not enough doctors choose rheumatology as a specialism and also because a lot of my generation have retired or are about to retire. This is something repeated worldwide - it isn't just the UK with that problem.

However, unique to the UK is that since the Brexit referendum many from the EU, who have been propping up medical services in the UK, no longer feel welcome or are unsure about their future once the UK leaves the EU. Their qualifications gained in the UK may not be valid as they are at present (of course the same applies for UK trained people who wish to use their skills abroad to broaden their experience). At present, time spent in the UK still contributes to their long term social security contributions for state pensions etc in their home country - after next March they most likely won't and letters have been sent to EU citizens by their home social security departments explaining this. So a lot have chosen to move back to the EU27 countries instead of remaining in the UK for longer. In some areas up to 25% of staff in the NHS were from outside the UK - and without them the NHS cannot function as well as it used to. And some know their family members will be disadvantaged so have chosen to return home.

It will be worse before it gets better - the gubmint insists it is "training x thousand new doctors" - but they aren't really because there aren't enough medical schools to do it and anyway it takes 6 years to produce a baby, wet behind the ears, what used to be called, Junior Houseperson. Then, said gubmint says it will encourage a high proportion of these extra doctors to go into GP-land which is an even worse desert - which means there won't be many left over to go in to rheumatology land or any of the other areas that need to be kept populated. And in both cases it requires another up to 6 years (or more) to fulfill the requirements to gain specialist status and start practising at that level. So they can't suddenly produce all these new GPs and specialists out of a hat like a rabbit.

The University Hospital of North Durham currently doesn't have ANY rheumatologists so all their patients are having to be spread around the other hospital Trusts in the region - some of the hospitals are linked to UHND to have rheumatology clinics so theirs are closed too. Wales and N.I are both so short of rheumatologists it can take up to 18 months to see a rheumy in the first place. And you can't apply to be seen out of area - or you can, but it will be refused. That isn't just for PMR which can be managed by a GP providing their get their brains in gear - it is for life-threatening rheumatological disorders such as lupus.

I don't think that qualifies as a rant - but maybe it should ...

Marijo1951
Marijo1951 in reply to PMRpro

Yes well - I knew the answer was resources really and from what you say about Durham, I'm obviously better off than many others. Ah Brexit - I'm sure it was my depression from that wretched result that started my illnesses off in the first place.

PMRpro
PMRproAmbassador in reply to Marijo1951

I never know whether to mention it or not - it has become a taboo subject in our family (all 4 of us rabid Remainers, after all, 2 of us live here) and we can't be sure how others will receive our opinions...

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Agree again! Trouble is, previous PM thought he’d get the answer he wanted and was surprised when he didn’t!

That’s what happens when you get “false news” - as someone else is fond of saying -promoting? - some people believe it! And then act on it.

jinasc
jinasc in reply to PMRpro

Me neither never know whether to mention it or not. It is taboo up here as you can imagine with the next door city result.

As someone who voted not to go in, once your in you stay there and work to get it changed to how you want it. Stupidity reigned and still does.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

I do like the term “gubmint” in your answer! That’s how I shall think of them in future!

PMRpro
PMRproAmbassador in reply to DorsetLady

I think of them in even less glowing terms... ;-)

Pastit
Pastit in reply to PMRpro

We're all doomed! Not much fun is it😶 I logged on to my local health center to book an appointment, pressed the book an appointment button and the computer said ' there are no appointments for today, so I pressed future appointments. The answer was 'there are no future appointments 😪

PMRpro
PMRproAmbassador in reply to Pastit

Is that being said in a Scottish accent?

Pastit
Pastit in reply to PMRpro

Yes and I have just updated it 🙄

HeronNS
HeronNS in reply to PMRpro

We have our own version of what Brexit is doing in the UK.

cbc.ca/news/canada/nova-sco...

Marijo1951
Marijo1951 in reply to HeronNS

So many EU staff have left the NHS in the last couple of years that some hospitals are devastated. Hope there's some resolution of your problems, so your Saudi staff can stay.

Suffererc
Suffererc in reply to PMRpro

So the sooner we are out of the EU the better when we can really sort our country out. Let's not get political tho because it causes so much hatred. What is wrong with GPs they don't inspire confidence anymore. Hardly look at you because of the screen in front of them and just waffle. I begin to wonder if this PMR is an illness or just something that occurs in my imagination.

S4ndy
S4ndy in reply to PMRpro

Picking up what you say about training new doctors here in Essex we have a new medical school opening at Anglia Ruskin University. The first intake is this Autumn. However I understand that the building is not yet finished and that they only have funding for two years! All seems like a bit of weird planning to me as do you start a course which may not be able to continue beyond two years!

ARU also train nurses and paramedics too all of whom now have to fund themselves with no bursary. Effectively meaning that they are paying to train and as all students get placements at hospitals/ambulance stations where they work 12 hour shifts, paying to work in the NHS too. I find this madness and can't see this as an attractive proposition for youngsters.

Someone pointed out to me that doctors, nurses and paramedics are more likely to be in regular work and therefore this group of students were more likely to pay back their huge student loans whereas other students may never be in a position to do so. So to commit to one of these courses you need to be dedicated and preferably have wealthy parents.

If not then you need a job too. I know nursing students who work on the wards then spend free time working in the local McDonalds! Then back to the ward for their next shift on about 4 hours sleep.

I really think our short sighted gubmit (love it) should bring back the bursary scheme and extend it to trainee paramedics and doctors. Oh and pay for the paramedics to take the appropriate driving test which they currently have to fund themselves.

Anyone might think that our gubmit doesn't want a national health service!

Now ranting so I will stop. Just feel sorry for the students who need support to train.

Marijo1951
Marijo1951 in reply to S4ndy

I'm with you all the way.

PMRpro
PMRproAmbassador in reply to S4ndy

Yes - my daughter funded her own heavy goods driving licence - had to have it to even apply for consideration as a paramedic trainee and it cost the best part of £2K 10 years ago - but was one of the last few intakes to do on the job training. Now she mentors paramedic students who are paying to study to get a job where they are abused by the punters! The other daughter is a nurse - but working bank (in house supply) because the area she wants to work in (neonate ICU) are desperately short but can only take on newly qualified staff if at all - Nat is too expensive as she has experience. OTOH she could get a permanent job in AMAU (acute medical assessment) where at least one member of staff is in tears before the end of every shift and they automatically do some 2 hours unpaid just to get the job done.

Apprenticeships are the way to go - paid to learn on the job. Just like the old days!!

Rosbud
Rosbud in reply to PMRpro

Bring back the SEN , they were the backbone of the wards x

PMRpro
PMRproAmbassador in reply to Rosbud

We were just saying that this week when my daughters were here (one is a nurse) - and it does seem as if there is a similar idea being thought about. It was the concept of working and doing qualifications at the same time that was so good - you cannot expect everyone to start their working life with a massive debt. And having done your SEN you could progress to become SRN - no-one was penalised for being short of money. I could understand the desperation for degree qualification and you paying to get in if you were likely to earn a decent salary at the end but nursing pay for the majority is hardly princely!

Rosbud
Rosbud in reply to PMRpro

Our SENs were fantastic , much nicer for the patients to have someone they could talk to and knowledgeable enough to go to SRNs etc with any problems ,I found it made for much more cohesive wards x

Suffererc
Suffererc in reply to PMRpro

My daughter is also a nurse prescriber. She was one of the last student nurses. Worked on the ward and did their school work. Home work was done in their own time. They turned out caring, compassionate nurses then with experience. I think many of those at uni studying nursing would rather learn that way. Also many other careers would be better served by apprentiships but most are steered into uni.

How long is a piece of string..................NHS - past gubmints (PMRpro) steadily working to privatise.

Me, heart problem - reared its head when admitted to Acute Med Ward last March.... still waiting to see Cardiac section......................my GP practice on the ball, but they have just lost a GP who was gone home - Netherlands. They cannot get a replacement either.

Marijo1951
Marijo1951 in reply to jinasc

When I first moved here, my GP's practice had 6 doctors and you could always get an appointment within a few days. Then a couple of years ago one of the partners was sadly killed when riding to work on his bike and another doctor left the practice at about the same time. So they are now down to 4 and it's almost impossible to get an appointment in less than a fortnight. Occasionally there's a locum but evidently no doctor wants to join on a permanent basis.

`an appointment in less than a fortnight` Here on the South Coast you are lucky to get one under five weeks unless really urgent.

Our surgery works very efficiently using specialist nurses who can prescribe certain meds. You can usually get same day appointments with nurse. If it is outside their remit, they will seek advice from docs on duty, but usually they can deal with things like UTI's, bloods etc. They can also make some referrals. Obviously I see doc for PMR related issues, but happy to see nurse for other things. Helps with division of labour and costs.

Specialist nurses are often as knowledgeable in their own field as the doctors. I've seen two different ones at the Whittington Hospital Gastro Clinic and was very impressed.

If you have GCA it is really necessary to have a rheumie. If you have just PMR there is no reason to go to secondary care unless you have something unusual with the PMR, your GP should be able to sort it out. Although some GPs do seem pretty useless, although that can be said of some rheumies too.

Marijo1951
Marijo1951 in reply to piglette

The problem is that I have both. I've twice had bad flares of GCA in the past both times when I reduced to 25mgs of pred per day. The second time I was prescribed Methotrexate which seems to have helped. If I have to rely on my GP, I'm going to try more or less telling him what I want to do - taper very slowly, one mg at a time - and hope that by March when I finally see the rheumy, she'll approve.

piglette
piglette in reply to Marijo1951

I had the same problem waiting for just six months to see my rheumie. She is a total waste of time in my case though. Your plan of reducing slowly seems very sensible.

PMRpro
PMRproAmbassador in reply to Marijo1951

Have you already seen a rheumy at all?

Hidden
Hidden

There was another grievance re. RF rheumy I had seen recently. It's not just R, but in any other departments, too.

It is a long time since l had any blood tests, l think my G P mentioned November for those. These used to be every six months,they are certainly cutting down.Regarding Brexit,do not forget that David Cameron tried to negotiate with the E U and was not listened to,he came away with very little concessions. This is the reason many people voted ‘Leave’.

Suffererc
Suffererc in reply to Grants148

The NHS seems to be in a complete muddle. In some clinics there are so many staff huddled in corners chatting while some are rushed off their feet. As for the latter part of your thread people voted leave because they wanted their country back and they all knew what they were voting for but look as the hatred it has caused. Whatever we all deserve the best treatment they can offer it is just getting it.

piglette
piglette in reply to Suffererc

The NHS has major management problems and also is desperately in need of a modern computer system using up to date technology. BREXIT will not make much difference except possibly make it worse as everything stops while people think about it.

Marijo1951
Marijo1951 in reply to piglette

The scandal is that the NHS wasted umpteen billions of pounds supposedly setting up a computer system that would make it possible for all branches to communicate directly with one another. My GP can get blood tests etc directly from the Whittington Hospital which is the nearest to him, but not from the Royal Free (which is only 2 miles away) or any other hospital. The rheumatology nurse at the RF has to fax results to the surgery or I have to pick them up personally and deliver them. I heard somewhere that the NHS is the main user of fax machines in the UK.

piglette
piglette in reply to Marijo1951

My GP cannot see my X-rays but just the info for some unknown reason. I think there are several computer systems involved, none of which are very good.

Twelve billion pounds was written off wasn’t it? Having just been in hospital where all admin was done with a biro and pen really frustrated me. You are asked the same thing several times for the various forms. I reckon they could cut admin by twent five per cent with a decent computer system.

I had a similar experience with my rheumatologist in Bristol. To cut a long story short , my health conditions have gone from osteoarthritis to severe osteoarthritis with an inflammatory arthritis mixed in . On one visit I mentioned severe pain in my head, temples and jaw. My consultant left the room and came back with a leaflet on Giant Cell Arteries. Read this she said and here is a prescription for steroids. I was to have an appointment with a rheumatoloy nurse to explain everything . I went to that appt and booked in , went to waiting area . Sat 4 half an hour , i asked if appt were running ok . To be told to ' sit and wait ' which I did for another half an hour . When I asked again , i was told the nurse I was due to see . Was off sick and no one else was available to see me . I have had loads of other bad experiences and now feel, left out on a limb! Can't even talk to ' my doctor ' because I see a different one every time. By the time they have read my notes, there is never much time to discuss why I am there. Then I find each doctor has there own opinion on me and I leave as confused as before 😂

This sounds downright disgraceful and you would have been right to lodge a formal complaint. I'm not happy about the way I've been treated but at least I've been forewarned in plenty of time. In your case obviously they couldn't predict that the nurse would be ill but they should have tried to phone or text you to let you know.

PMRpro
PMRproAmbassador in reply to Debbiecoops

Such a shame - Bristol had a really good GCA/PMR team until Kirwan retired and then his "babies" have dispersed across the UK as consultants. Which is good for everyone else but not so helpfull for you.

piglette
piglette in reply to Debbiecoops

This is really parr for the course. I hate to think how much time I have wasted over the last year waiting, being let down, people not listening, arghhh.

Can’t understand why you need a rheumatologist, my GP practice do not refer for Polymialgia as it’s easily managed by them unless you have had GCA, I started on monthly appointments a year ago but after 6 months stopped those as I am (as a 70 year old adult) trusted to take care of myself , and have successfully reduced from 15mg to my current 4.5 with no pain or side effects. Our NHS is fantastic and is always there when you really need it

I do have GCA as well as PMR and, as I said, have had two severe flare ups. I don't think my GP knows anything about the condition and I really would like to see the rheumatologist so I can discuss any problems with her.

I guess we get reffered to rheumatologist because they specialise in arthritis etc . The first doctor I saw at my practise did my blood tests. When the results came back said I had to see a rheumatologist. I guess I took her advice , as I knew nothing about arthritis. I always associated it with old age but as I'm 52 most of the doctors I have seen, thought I was too young for this level of arthritis . I would much prefer to just see ' My Doctor ' however in my practise there is no such thing. There is a great deal of ' Looking after yourself ' with these conditions. However I have been advised by my rheumatologist that I need to start on methotrexate, otherwise my joint damage will be permanent. I was told this in March. I am still waiting for an appt to start this drug . I have been told that I need an appt with a rheumatology nurse before I start taking it . I have rung several times to arrange this but never get a call back. I am a fan of the nhs, both my young grandaughters have needed medical attention in the last year . The nhs staff we dealt with have all been lovely

PMRpro
PMRproAmbassador in reply to Debbiecoops

Have you got PMR? Are they sure about your diagnosis? There is NO joint damage in PMR. If there is joint damage evident it is NOT PMR.

Debbiecoops
Debbiecoops in reply to PMRpro

I have been diagnosed with severe osteoarthritis, rheumatoid arthritis. Pmr. GCA. Diabetes. Pulmonary hypertension. It's the rheumatoid that is causing pain and swelling on my ankle and feet at present . I was told by my occupational therapist that 90% of the patients seen in rheumatology are on methotrexate. She explained to me that it was a disease modifying drug and that I would need to try it too prevent permanent damage to my joints

PMRpro
PMRproAmbassador in reply to Debbiecoops

Fair enough - if you have RA then you need methotrexate to prevent joint damage. But your reply didn't have that conext apparent - and it sounded as if your doctor was saying you needed mtx to prevent joint damage in PMR.

I have to say - I think saying 90% of patients under rheumatologists are on mtx is a bit OTT. There are a lot of patients for whom mtx is useless. Or maybe we don't qualify for OT so she never sees us...

piglette
piglette in reply to Debbiecoops

Why have you got joint damage? Does the rheumie thing you have rheumatoid arthritis or is her brain not in gear? People in the NHS are lovely it is just that they have the most appalling management.

I too know some people who have never been to a rheumatologist, my thinking is that`s ok if you lower successfully and don`t need advice, how lucky are they and you to be "easily managed"....wish it was like that for all of us...

piglette
piglette in reply to Longtimer

I think in general that people with PMR do not go to a rheumatologist, only if there is something abnormal happening. In the case of GCA a rheumie is needed though.

PMRpro
PMRproAmbassador in reply to piglette

Though rheumies do apparently feel that every PMR patient should be seen at least once by a specialist and, judging by their actions, before pred is started. They feel a lot of people have a PMR diagnosis when it isn't - but why should patients be left for so long in pain that can so easily be relieved with pred? I think a good approach would be Kirwan's pred sandwich and an expedited apt for patients who pass the test.

piglette
piglette in reply to PMRpro

I think one problem is the huge rift between primary and secondary care in U.K. If the system worked I would agree but having to wait on average three months to see a rheumie is not really on. I am surprised how few doctors seem to use the pred sandwich. There was an article about it in the BMJ a couple of years ago, but as you know doctors don’t read!!

Debbiecoops
Debbiecoops in reply to piglette

The rheumatologist I see for my arthritis runs a separate clinic for gca. So I see her in 2 separate clinics

piglette
piglette in reply to Debbiecoops

Words fail me!

I don't understand why now when A clinic is cancelled because of illness /holiday etc , instead of in my time in NHS rescheduling consecutive clinics back A week or two , they just move the cancelled patients to any space they have !

PMRpro
PMRproAmbassador in reply to Rosbud

Part of that is because the following weeks are also full - they make appointments several weeks ahead for re-calls.

Rosbud
Rosbud in reply to PMRpro

I know this was part of my remit as A clinic manager but we backed each week up so that everybody moved back by the same amount of time and nobody had to wait extreme times for follow up ,it can be done but I admit it's time consuming x

PMRpro
PMRproAmbassador in reply to Rosbud

And the staff like us who could SEE that was the sensible way are gone - do they still do this stupid central booking thing? I come from the days where each department secretary did the appointments - they've mostly gone now too.

Then the appointments are sent out too soon and they rarely remind the patient so loads forget and waste the space - I get a text at the weekend before the appointment and that is still long enough to almost forget if you aren't careful! ;-)

As an ex-Ward Sister I was a big supporter of the NHS.

That was some years ago, I have given up on it and I am grateful to have private consultations with a rheumatologist. I justify it by thinking that I give up my place in the queue to someone else who needs it. I am grateful I can afford it and have felt too ill on occasions to try to solve the problems of the NHS. Sorry but if it is the envy of the world why did no one else copy it.?

PMRpro
PMRproAmbassador in reply to Sallyaches

Actually about half the healthcare systems in mainland Europe are very similar - with free treatment for everyone who needs it. But the contributions I and my husband paid here in Italy and in Germany years ago were much higher and far more realistic. We also have considerable limits on what is covered free or for a very small co-pay - which are similar in size to prescription charges. There is also an income-based side to it - free is for people with a maximum household income of 35,000 euros or with clearly specified medical conditions. If you have diabetes you get all your diabetic stuff for a low charge but everything else is the same as someone without diabetes. And we are allowed to have top-up private insurance if we want - a mix and match system unlike the UK. It works well - no-one has to go without care because they can't afford it.

And I would also support the idea of oncome-based contributions to care within the NHS. Why do people have a hissy fit when it is suggested?

Don't worry about us leaving the EU. I'm sure there is a secret plan. Theresa (and Call me Dave) - are remainers. When the referendum went against them, and against many others in Gubmint (thanks PMRpro) - they will have plotted. I think it goes like this:-

* Purposefully state that we are going to leave to please the small majority - come what may.

* Allow all the snags (that were not revealed to before) to bubble up and fester.

* State that there will definitely be no second referendum. (Stir the pot).

* Allow confusion and doubt to reach fever pitch.

* Gracefully "give in" and call a second referendum - somewhere from November to January maybe.

That's my theory anyway.

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