Better access to consultants/specialists - LUPUS UK


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Better access to consultants/specialists

awareness75 profile image

With the rise and greater awareness of various diseases; many which have a very complex management, does anyone agree with me that if possible, ( I guess the comeback response will be NHS funding) to have a consultant at your GP surgery, because for people with LTC, 4-6 months visit isnt necessarily adequate.

The times over the years I have been to my GP, regarding my Lupus symptoms that have arose in between consultant appointments and he can't help me. He just says "when you see your consultant next, discuss it with him" or " take a paracetamol!"

I will mention that my Lupus isn't constantly active, so this is not me running to the docs every minute.

I was just wondering if there was someway possible to create a new system at GPs to see a consultant /specialists once a week, right across the UK.

E.g Monday at Norfolk GP surgery is an MS specialist. Tuesday is Lupus, Wednesday is fyromalgia and so on...

I personally would find this helpful, even if it was appointment booked, because sometimes 6 months is too long to see someone if you're suffering and there isn’t any other professionals with the expertise to help.

Just my final bit on the end, my consultant clinic was 25 miles away from home, which was always an operation to get to. Maybe there are others on here who have this as a current problem...🤔🤔

Regards, Awareness75

34 Replies
Hidden profile image

Hmm I can see your point. However I also think that things are more likely to go in the opposite direction because apparently it’s been suggested that GPs see groups of patients with certain conditions for group consultations rather than one to one - or so someone on the RA HU posted anyway .

What I think might help more is video conferencing with consultants being available in GP’s surgeries?

This has been happening at my former island hospital in Orkney and is a really good adjunct to face to face rheumatology consultations - particularly since the consultants usually only get up there every few months. In fact I once wrote about it for the NRAS magazine about five years ago and was then invited to the EULAR congress to speak about it to a more international audience so it is something I have used myself and found quite helpful. After my presentation I had two rheumatologists from very poor countries come up and ask me if I thought it might work where they are - the only rheumatologists serving huge populations spread over huge areas of bush or desert. I wasn’t sure what to say of course but it’s got to be better than never being seen at all or only being seen very occasionally - perhaps when all is remitting?

Also my former GP used to email my rheum directly when he was concerned about a patient for any reason. My rheum used to get straight back to him usually - sometimes by phone. Then my GP would ring me to relay the news.

This worked well too so I actually had better contact with rheumatology by the time I left than I have now living near to my much larger hospital on the mainland.

My new GPs have occasionally emailed my specialists directly about something but mostly do same as yours and just refuse to get involved.

So erhaps the telemedicine idea needs trialling properly across all GP practices in UK and hospitals?

awareness75 profile image
awareness75 in reply to Hidden

Some good points. I agree with you.

There is a world shortage of rheumatologists (it isn't just the UK where it is likely to get worse not better and them being in the hospital and the patient going to them rather than the other way round must be a more sensible allocation of resources I'm afraid.

awareness75 profile image
awareness75 in reply to PMRpro

Even a couple of hours would help, or once a month. My clinic is only used on a Tuesday and Thursday between 12pm and 4pm. If the consultant is not in meetings in the mornings and has an availability on the other days, surely if there's an opportunity for those consultants that can go, that would be great.

Hidden profile image
Hidden in reply to awareness75

I’m afraid I agree with Pro - most rheumatologists, dermatologists, neurologists etc are fire fighting even when in their bulging clinics and all time in between is spent going to meetings, attending conferences or catching up on phone calls and admin.

I think under the circumstances I’d rather mine were spending their time speaking to their colleagues in other hospitals about rare conditions and updating their professional practice than trawling around local GP practices.

PMRpro profile image
PMRpro in reply to awareness75

But they have to travel, and that takes time. Most don't work in just a single hospital, there are clinics in outlying hospitals too. Do the sums: a clinic at a hospital will see maybe 20 patients in an afternoon. The doctor sits in a room, sometimes alternating between 2, and the patients are churned through at 15-20 mins each. In the same time in a GP practice he might see half a dozen at most. Really poor allocation of his time.

Wendy39 profile image
Wendy39 in reply to awareness75

In my area people with lupus have been discharged with lupus, me included, so we have no Consultant and are looked after by GP alone. It’s a sad state of affairs.

louise-a profile image
louise-a in reply to Wendy39

Yup we have just lost another. xx

Most consultants are working a 50/60 hour week already....I want my doctor alert & well rested....I don't want him off sick with exhaustion as then he'd see nobody.

I.m afraid until more doctors are either trained in UK or imported access to consultants will not improve.

Wendy39 profile image
Wendy39 in reply to PMRpro

It would be nice to have a Consultant.........

PMRpro profile image
PMRpro in reply to Wendy39

Well quite - and sending one to a GP practice would reduce the number of patients who could be seen at all!

KayHimm profile image
KayHimm in reply to PMRpro

Yes, we seem to be heading toward a shortage of rheumatologists in the U.S., too, because of the growing number of older patients with osteoarthritis and other issues. And a lot of our doctors are moving out of the insurance system, which means we have to pay out of pocket.

Hidden profile image

awareness75 profile image
awareness75 in reply to Hidden

I guess if you're really not well enough to go out, this is very beneficial.

Hidden profile image
Hidden in reply to awareness75

Well the service I’m talking about here was in my small local hospital in a dedicated telemedicine room - I saw my rheum and neuro once each. But I’m thinking that our island GPs and children’s therapy centre all had dedicated facilities so it was like an appointment apart from the examination - which my doctors never really do anyhow for me since most of my problems are neuropathy and fatigue related so nothing to see. But the GP or practice nurse or a junior doctor can always examine at the consultant’s instructions. It works well for psychiatry and cardiology too I believe.

Hi awareness

You make an interesting point about having a Consultsnt visit a GP surgery to help us have sooner consultations!. Would be wonderful but I can't see them willing to do it!. They like the status of a hospital too much. As someone who has waited 10 months for my Rheumy consultation this year I do agree 4-6 monthly is not adequate with our complex illnesses. I've got a lot to discuss as a result and let's face it we only get 10- 20 mins in which to do it!. To be fair my Rheumy has always said if I have a drug query I can ring his secretary to leave him a message and if I've got problems I can ask to go on cancellation list to try to bring appt forward. Have you thought of doing this?. I'm pleased you say your lupus is well controlled so your not always st the gp's . I also agree with your comments at what our gp's say to us so much. There knowledge of these illnesses can be poor so always refer us to our Rheumy's which can be frustrating and annoying!. Thanks so much for posing this great question and I hope you continue to stay lupus free for as long as possible!. X

Lupiknits profile image
Lupiknits in reply to misty14

You've brought up an important point there about status. Consultants prefer their status in hospitals and often cover more than one. Their contracts are quite specific already.GPs would be asking for some contribution to the use of their premises and staff.

My GPS are very firm about how they do not have the training or knowledge to deal with our conditions and are straight onto the consultants to see me if anything different happens. Once advised, they can take over.

Yes, we do have what appears to be a long time between actually being seen by a rheumy and in spite of Wendy's valiant efforts there is not a single Lupus consultant in Wales. Many of us are in the "not sure what, but something autoimmune" club (I can't remember whisperit's wonderful description of the club). How can that be handled? Diagnoses requiring more than one consultant are hard enough because consultant's seem to prefer silo working.

I think some telemedicine could help, but if you need to be prodded by an expert finger you just need to be there in person.

As to the idea of group sessions of, say, those with fully diagnosed RA, I simply can't see how that would work except as a sort of talking shop.

Maybe I shouldn't have written this. Debbie Downer who has 14 consultant or hospital appts between now and the middle of November strikes again.

misty14 profile image
misty14 in reply to Lupiknits

Thanks lupiknits, I couldn't agree more with your reply!. Hope your as well as possible. Xx

Lupiknits profile image
Lupiknits in reply to misty14

Thanks misty. Let's all give a cheer to the extra appt I just got! Darn blood tests keep coming back with "repeat" on them 😂😢

misty14 profile image
misty14 in reply to Lupiknits

Best of luck lupiknits, sorry NHS is giving you a busy time!. X

It seems people with complex medical conditions do suffer in the UK. The situation is very different from in the U.S., and I was wondering what the factors were that make it difficult for you to get proper care. Apparently, the U.K.’s under-funded NHS dictates what GPs can do and de-emphasize specialty care. It sounds like they control the number of specialists who receive training. To make it worse, the specialists have no incentive to see more patients because they are under the poor NHS salary ladder and get angry at what they see as inappropriate referrals. In the U.S. we seem to have enough specialists but insurance companies vary in how they determine the cost. I did read that patient satisfaction with specialty care in the U.K. is poor. It sure sounds to me like a lot of people here are really struggling and would be doing better with better access to care. We would be seen by a rheumatologist, not our g.p., for most things people bring up here. And we get answers usually at the end of the day to questions we pose through e-mail or telephone. There are clearly good things about your health care system in that you are all covered but I don’t hear that those with chronic and complex illnesses are treated with the attention you should be getting. One medical writer in the U.K. agreed!

AgedCrone profile image
AgedCrone in reply to KayHimm

Hi KH.....Basically the NHS is often chaotic......we can wait up to three weeks for a a GP 10 minute appointment & for some reason....a lot of NHS GP practices in England don't use email to contact patients!

Yes in the 21st century they still uses faxes. I have often asked for info to be sent by email & just get the answer " we only fax" can wait well over a week for an answer - by regular mail. In my GP practice you are "not allowed" to speak to the secretary - you have to leave a message with the receptionist....& wait.

In my area we can email the Rheumy nurses, but have recently been told they "won't be able to reply" Instead they have to waste time phoning you...usually to leave a message to call them back. I honestly think a lot of people just give up.

That said no NHS department has enough staff in any area to do an even 'satisfactory' job.

But being Brits we just soldier on!

We do have a great shortage of doctors being trained as Govts in the past have cut budgets for training ....& when they are trained they do not want to be GP's....even though they can make around £100k pa which is a very good salary in most parts of the U.K.instead we have a large number of young female doctors who work part time as GPs to fit in with their family life.

There is great résistance to increasing the contributions everybody pays, & so with the population increasing at a much faster rate than anticipated, often by people who need to use the NHS, but have never paid any contributions, it is in a sorry state.

But on the whole the clinical staff do as good a job as they can in very difficult circumstances.....and everybody can get access to treatment- eventually.Most NHS Consultants also have private practices where they can work as much as they like after they have fulfilled their contracted hours with the NHS.

Americans coming to live & work in the UK permanently (who do not have medical insurance through their job) are completely bemused by the system....they pay a nominal sum, start paying contributions & are immediately entitled to treatment.

The NHS also treat anyone who either arrives in the UK sick or falls sick whilst here. They get any treatmen they need.....are asked to pay, but often don't. Often nothing practical is done to retrieve those costs......running into a few million pounds.

We are being promised restructuring & better funding ....but it seems as soon as the funding goes up everything gets more expensive so it's anyone guess if things will improve any time soon.

KayHimm profile image
KayHimm in reply to AgedCrone

Hi AC - It really is a different system over there. The good thing is all of you get care even, though it is not always so organized. Care here is highly variable. If you can access it, healthcare is both sophisticated and efficient. My friend just had knee surgery in one of the best orthopedic hospitals in the country. I could see exactly where she was in the process simply by following her assigned number on a screen in a waiting room with a view (and a coffee bar). On the other hand, almost ten percent of Americans have no health insurance. It is heartbreaking to hear stories of chronically ill people who cannot access care. I certainly don’t have answers. Thank you for your informative post on the British healthcare system. You would laugh at our Patient Portals — apps that allow us to e-mail our doctors, check our labs, and make our appointments. No faxes! KH

AgedCrone profile image
AgedCrone in reply to KayHimm

Yes it's night & day......I lived in NY in the1980's ...luckily before any AI diseases,but I liked the fact you could access any Specialist you wanted as long as you could afford it. Here, we need a referral from our GP to be seen on the NHS & be treated free.

Of course you can self pay to see any doctor in Private practice, but that cn be more expensive than in the US.

I have just tried to access some blood tests on my iPad.....the answer I keep getting us "We do not have your mobile phone number" Go figure...I now have to wait until Monday,& if I need to make an appointment I have lost two days.

Keeping calm sure help with the NHS!

KayHimm profile image
KayHimm in reply to AgedCrone

Technology has its drawbacks! Hope the NHS acknowledges your phone number soon. Good you are able to stay calm.

baba profile image
baba in reply to KayHimm

We have those apps in the NHS too!

eekt profile image
eekt in reply to KayHimm

Many consultants in the UK work part-time in the NHS and part-time in private practice. A cynic might say they bank the reasonably-generous NHS pension, and make up salary in private work, while retiring in their fifties ie after a 20-25 year working life. 🥂🍰

I received a quote of £2,000 for a 500-word medico-legal report from an NHS Rheumy. Rich pickings...🤑🤑🤑

A graduate nurse with 12 months' experience can earn 50% more than in the NHS by working for a company providing welfare 'assessments' for state shift work, no overtime, no manual work, plus bonuses for rejecting claimants. Very appealing.

GPs as contractors make their own arrangements as to working hours: all five at my local practice are part-time. Those working four days a week earn £80,000+, more than three times the average salary.

GPs are at the bottom end of the doctors' salary scale for NHS work - in England, they have to post their income on their website - and some consultants earn £120,000+ on the NHS.

In short, it wouldn't seem to be medics' pay that makes good healthcare so difficult to come by! 🤷‍♀️ xxx

This is one reason why Lupus UK are providing nurses. The one in north Wales is also peripatetic. Best wishes Kevin

Paul_Howard profile image

Hi awareness75,

I'd like to echo what Kevin53 has said - I don't think it is likely that the NHS will be able to achieve what you have suggested and even more regular appointments with rheumatologists will be difficult with the strain on the system - LUPUS UK is doing what we can to help by funding Specialist Lupus Nurses in hospitals around the UK. These nurses have dedicated helplines and clinics for patients with lupus and can provide specialist information and advice that your GP will often not be able to.

Does your hospital have a rheumatology nurse specialist? Whilst they may not be a lupus specialist they could still possibly be more help than your GP in between appointments with your consultant.

Hi. Paul.

I have yet to find out at this new hospital. Will give an update on that. Probably not until next year now. At Worcester, we had a good nurse specialist, but she left earlier this year. I don't think she was getting much support there, as they were struggling to find a permanent set of Rheumatologist after almost 2 years, as my original one went off sick and never came back. Some others retired.

Hi I am so glad that I live in Australia. I can see any GP or specialist anytime I want to. We don't pay to see GP S and specialists are generally affordable. It all sounds so frustrating and difficult for you guys so sorry.

TBH I can't see Consultants being able to take time away from their hospital base to go to GP the AI field in particular they are so thin on the ground it would be impossible.

There are over a million people working in the NHS. I often wonder how many of them are doing a job that is directly making people better or looking after lives...🤔🤔

Hidden profile image
Hidden in reply to awareness75

I think a lot of the failings are about the NHS just not being designed in a way that makes it fit for purpose now. Each area that is found to be failing only ever actually ever gets patched up at best. And no one is allowed to criticise the NHS - even in a constructive way. This is apparently disloyal and shameful?

No political party is prepared to stick its neck put to criticise or try to completely overhaul our approach to this beloved institution. Instead we all have to praise to the skies even if our own experiences of it completely fail to match any of our expectations of a modern healthcare system?

Because ALL of our political parties are so focused on winning votes in local and general elections, they have no real interest in focussing on long term benefits that redesigning these fundamentally flagging systems would bring. Instead promises are made that, if implemented, will always be kept at the expense of some other less noticeable aspects - eg rheumatology or neurology?

To my my mind the entire welfare state needs an big injection of really good, honest, tough love.

And this means us looking at other more efficient democracies with far more successful welfare states than ours.

If all citizens in these countries pay a great deal more in taxes and successive governments don’t live in fear raising it or insisting on corporation taxes - then we should follow suit.

We will always get what we pay for. We have be capable of adopting completely different models where it’s failing while keeping babies in bathwater where it’s working well. A very hard balancing act to follow but essential if we want to save our welfare state from collapsing.

Presently we all just want to have our cake and eat it. Better that we have realistic expectations and some real honesty from politicians, NHS managers and consultants about the reasons behind decisions at all levels. But we do all have a stake in these too and need to flag up where it’s working or failing for us as individuals.

But if we keep being told that, despite our own lousy experiences of the NHS, we have to give it big happy birthday cakes, overlooking its many failings including fundamental dishonesty - feeling fearful of speaking out in case we are shot down - then I can only see things going from bad to worse.

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