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Discussion Starter #1
Ignorance is bliss...............sometimes but I apologize in advance for my ignorance in asking what seems to me to be a very stupid question.

I know that this forum is out of the UK, isn't it?

OK, I also notice folks having a hard time getting in to see a doctor or having to wait a long time to get a appointment and I am not sure why this happens in Europe.

Can someone please shed light on this for me.

I feel horrible when I read posts like this one of people in so much pain and yet they wait forever to get help.

I just don't get it.:sad::sad::sad:
 

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Hi Karol,

I don't think it's so much the wait time that's a problem (that's usually around the 2 month mark for a first appointment with a new doc - something that seems very common everywhere in the world when trying to get into a good specialist). It's more a matter of finding a Lupus specialist Rheumy, not just any old Rheumy who treats mainly old ladies with osteoarthritis. Lupus as you know is a very complicated, specialised subject and not all docs are competent at handling it. That's true wherever we are in the world I think ;)

love
Lily
 

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Hello Karol
First off, each European country has its own system of healthcare.
All the western European countries, the Scandinavian countries, Canada, Australia and New Zealand have some form of socialised health and welfare care.

In the UK this is embodied in our 'NHS', National Health System on which health care is free at the point of delivery to everybody who is normally resident in the UK regardless of whether they are working or not.

For prescription medicines you pay a flat rate per item but they are free to certain groups, such as the over 60's, children, pregnant women and some people on benefits and a few lifelong conditions. The service is paid for by contributions from the working population, and from taxation and from local taxes, especially for local welfare provisions. Local provisions vary very much. They tend to be better in the more prosperous parts of the country with a powerful local and national government electorate.

I am not sure but I think the contribution from earned income in the UK is a obligatory flat rate but in some countries it is based on how much you earn, up to a maximum. Private health care is available too, often through employment and in some European countries, it is the norm for all professional people to also have a private insurance, independent from any their employers might offer.

In every country including the USA you get what you pay for. The higher the contribution rate the more you are entitled to and the better the provisions. I wouldn't be surprised if the UK rate was the lowest in Europe. I haven't lived in Europe for over 12 years now but certainly had the impression that waiting times were far less, probably because the obligatory contributions were much higher than in the UK

In the UK you can mix private and national health care which is why you will notice us so often recommending paying to see a top specialist privately to get answers fast.
Most hospitals have a government imposed target of first consultation within three months maximum and a follow up within two months. What happens after that depends on need, to some extent, luck, and what we call the post code lottery, meaning where you live.
I hadn't realised that at St Thomas' which is one of the world leading lupus centres and the biggest in Europe only two of the consultants and one secretary are paid for from NHS funds. The others are paid by the St. Thomas' Lupus Trust.

All chronic conditions and elective surgery needs are very poorly served and suffer awful waiting times- maybe two years for an epileptic to get a MRI.

In many parts of the USA it is just as hard even with good insurance to get quick appointments and to access the best care because there is a shortage of good GPs and specialists.

In NYC my lupus specialist didn't accept insurance but I could afford to see him privately and he was always available and would fit me in that very day if he was in town and it was an emergency. I even had his beeper number.
By the way, our USA health insurance employee contribution was something like $400, £200 a month. When I had my hernia concerns, non urgent, about 6 years ago I saw my GP the day following my request for an appointment ($10 copay), the surgeon the following week ($30 specialist co pay) and I could choose to have the surgery at any time after ten days wait for blood tests. The day surgery bill was something over $20,000, £10,000, including a couple hours extra time in recovery and some special scalpel at $500, £250. We ourselves paid something like $1000. In the UK it would cost me nothing but I would have to wait until it was urgent.

Cheers
Clare
 

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Hi Karol

I am in the UK and to be honest have never seen the waiting times in my area to be particularly long. I saw my preferred Rheumy within 3 weeks of asking the doc to refer me and I think the wait is now around 5 weeks, this is for an international expert lupus doctor! At no cost to me, and when I was on a low income I was even able to claim my transport costs back.

I currently have had a three week wait to see a psychatrist about anti-depression medicines (I have lots of allergies so GP can't prescribe) but I could have had a 48 hour emergency appointment if I had wanted, I preferred to leave that for someone more desperate as I am coping OK. Again I think this is good waiting times.

My partner has some health problems and he got a neurology appointment in 5 days, and a scan appointment came through in two weeks. They have done evening appointments for this which is great as he works.

It may be that I live in a University City with two major teaching hospitals very close to me but I have never in the 8 years I have been having lupus treatment had any cause to bemoan either waiting times or quality of service. Even referrals for phsyio have been really quick. When my partner broke his arm last year the ER treatment and all the follow up was very good, and he never waiting more than 10 minutes in the waiting room when he went for the endless follow up appointments for what was a very complex fracture. We get better service in the NHS than we do when we go to any department store, buy anything on the internet etc. I know not everyone does but I have sat in waiting rooms hearing people complain because a nurse or doc appointment is 10 minutes late. This really winds me up because the person waiting has no idea of the stress medical professionals are under. Yes, I know there are GPs and rheumies that are rather unskilled but I am convinced they are not in the majority. I do think patients also need more skill and self-responsibility in handling their own illnesses rather than just demanding instant service.

I must admit we are nervous about moving away from such really excellent, and free, healthcare. I do have to pay for medication but on a special deal that costs only just under £10 a month for as many meds as I need. When my income dropped I got the meds for free. My partner is over 60 and does not pay for medication, again I think that is brilliant.

Sorry, a bit of a rant here. But I have been on this planet 53 years and lived in 5 different areas of England and I think our NHS has overall been excellent.

The big problem lies in lack of lupus awareness and of course the fact that as an illness it is so variable and the treatments so far available are rather hit and miss. We can all help to raise awareness and funds towards research. I think docs are only just beginning to realise what pain lupus sufferers are in. If you had read an earlier addition of the Daniel Wallace book it only referred to pain three times and in one of the sections suggested patients needed to sort out their attitude to illness and the pain would diminish!! I notice he has changed his tune in the last edition. There are of course also things we can do for our own pain, not to remove it but to reduce it a bit.

The trick is as patients not to let our fear and uncertainty turn into anger or to let it project out onto our hardworking medical practitioners or onto the system. People get ill with illnesses that have no cure, it must be hard for a doctor to cope with that, when they have taken a vow to cure and heal.

Sara
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Hi Karol,

I'm in Belgium and the system is yet again different here. We have a system where everyone pays a little something towards their healthcare. It's not expensive, (except if you self-employed like me :lol: They are slowly bringing that in line so that we really will all end up paying the same) and means there is only one system. No private care as it is all "private" really.

Our waiting times depend really on who you have to see. For some well known specialists they can be up to three months (that the longest I've seen) but can be as little as two weeks as well.

Generally once you have seen that specialist, he or she will see you again when he needs to and gives you your next appointment directly during the appointment which means that at times I saw my rheumy every month or every two months.

If you have an "emergency" inbetween they will always fit you in and see you much quicker.

For medecines, a large part is reimbursed (usually around 2/3). The same is true of doctors' visits. So, you are always contributing something but not too much. One thing though. A visit to a specialist will only set you back about 35 euro (before reimbursement) which is a lot less than some "private" care. Some of my meds are free (imuran for example), others cost very little.

We have a very good sytem which really does provide eqaul care to everybody whatever their social or work situation. Of course, as Clare says, you get what you pay for. We have very high taxes compared to many countries. For example, as a self employed person, I can calculate that 56% of what I earn goes back to the government in social security payments and taxes. Basically I have to bill double what I need to live off.

When an employer takes somebody on, he can also calculate that that person will cost him twice what the employee gets as take home pay.

Katharine
 

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Clare.T;516888 said:
...All chronic conditions and elective surgery needs are very poorly served and suffer awful waiting times- maybe two years for an epileptic to get a MRI.

Clare
Wow, that is shocking. In Ottawa, Ontario Canada, the closest city to me runs the MRI machines 24 hours. Some my friends have had appointments to 3:30 am! The wait time is probably 2-4 months.

Nutty
 

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Hi, what an interesting thread!

I guess it's differnet in every area of the UK and I'm glad that some members have had reasonable experiences of the NHS. In general though, mine have been far short of acceptable, let alone 'good'.

I have recently been an inpatient (again, over 30 admissions last 4 years since diagnosis of lupus and APS and CVID). The ward was dirty, I had no BP or temp etc done on two of the days because of staff shortages and I saw a nurse for about average of 6 minutes per day. When I 'complained' to the sister in charge she said she agreed with me it was disgusting and she wouldn't stay in the hospital either! Everyone else on the ward was over at least 85 years (I'm 30) and most very confused. One lady was covered in her own excrement and kept grabbing hold of my husband. When we asked for assistance from a nurse to help this lady they simply turned and faced the other way! Added to this the Rheumy consultant informed me she had NO junior staff for the first two days of my admission and on one day she was not around either - this means I had no doctor cover on this one day.

As for outpatient appointments, well . . . .. I had to go private in the end to get my diagnosis. I find the waiting times way too long inbetween appointments and I find that different health professionals don't appear to want/be able to work together. This means getting different and confusing advice and it's often conflicting. As I also have CVID I have to travel over 80 miles for my nearest (!) centre. However this Immunology Clinic for Immunodeficiency is not SO busy and you can generally get an appointment reasonably fast -ish ( 3-4 weeks). The wait in the department is generally about 1-2 hours. The Lupus Clinic I attend can be months between appts despite the fact my lupus is really unstable. In the clinic can be a whole day affair and several hours wait. I am a patient person - luckily - and generally I don't mind the wait as I expect it. However I have witnesssed a lot of unhappy people over the last few years.

In addition my younger brother was recently diagnosed with malignant melanoma skin cancer in the midlands and was given a biopsy and no results for cancer for 4 weeks!!! Then was told it would take several weeks to get the op in the NHS - the Consultant said it was appalling but 'out of his hands'. My brother opted to pay private. But this is not ideal either and he was lucky as he had some private insurance that covered most of the costs.

I don't mean this to be a really negative post. I have met some amazing professionals who work in the NHS. However I think the system is massively letting us down - and the staff who really try. I don't know the solution but after my recent admission I do feel really resolved that something really does need to urgently happen for all our (and those we love ) sakes. Infact, I am now urgently looking into private healthcare costs for my next flare -up. I just don't think I can 'face' the NHS again, especially not when I'm at my most vulnerable physically and emotionally

Cathy x
 

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Discussion Starter #8
Thank you all for enlightening me as to how it works in Europe.

I think that depending where you live will determine the care you get and how quickly you receive it. At least that is what I understand thus far from what I have read.

It really is a very interesting and thought provoking thread.:wink2:
 
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