A Doctors List

[Graham3196]

One of the big problems RLS patients have is finding a doctor who understands the problem and understands the remedies and the drugs involved..

Does the management of this site have any policy or opinion about members naming doctors who have treated them well. I am sure there are good reasons why we can't name the other sort of doctors.

Perhaps the organisation can join the modern trend toward moneterising everything and develop a logo for rent like "FODMAP Friendly" or Energy Star Rating "Australian Made" or RSPCA We then (somehow) work out a systematic process to qualify doctors to use our logo. At worst this might just mean that they were interested enough to ask. Even that would be better than wasting time with so many doctors who just follow a standard process that we all know is not effective for so many people. We would have a list of doctors who wanted to encourage RLS patients and by implication might be ready to study the problem a bit more than they do now.

Cheers

Graham

[nightdancer]

You have been round long enough. WE mention good doctors names ALL the time. There is an unwritten rule not to slander or libel any one doctor. ok?

[Graham3196 in reply to nightdancer]

We seem to mention Doctor Buchfuhrer frequently and a few others at Johns Hopkins and a couple in London I think but no-one in Manchester or Dublin or Idaho.

Can it really be that there are no good experiences out side these centres? Or is it that there are many good doctors out there and their RLS patients are all healthy with no augmentation problems and no anti depressant drugs that are widely known to trigger RLS. So their patients never find this forum because they are all happy and sleeping well? Obviously a forum finds and concentrates the medical professions failures. There are probably people who find this forum, follow the expert advice and never need to return.

Of course we cannot and definitely should not name the doctors who aren't effective. One main reason being that they might have patients who are not cooperative or are just very difficult to treat. The other being that they might get a lawyer to take away my house.

So I ask any members on the forum who have a good doctor who is trying hard to understand the best treatment for RLS and providing them and their friends with good service to name them here. This might have a cumulative effect as these doctors start to find they have an economically significant number of RLS patients and can afford to take time to study our disease.

I used to attend a clinic with about 10 GPs. Some of these had high levels of experience with particular topics such as skin cancer so their associates in the clinic would pass you on to the local expert. I have stopped visiting since their expert on iron infusion, who ran a separate business dealing with infusions, refused to infuse me. At that time they revealed that they had no time, or desire, to learn about RLS. Before this I would have recommended one doctor at the clinic because he was interested in reading notes I gave him and he supported what I was doing. He started to go down a fairly traditional path of drugs but he was genuinely trying to help and when plan A failed he was willing to explore an alternative approach and provide medical support. Unfortunately (for me) he returned to Canada and I had to discover that the other GPs at the clinic were not very cooperative.

So if you live in Melbourne and decide to try an iron infusion I can recommend you contact Dr Fleur Dwyer who will be able to arrange an iron infusion for you. If you are not defined as anemic it will cost about AUD500.

Cheers

Graham

[Hidden in reply to Graham3196]

Thanks Graham, I'd welcome a list of RLS knowledgeable doctors but I feel it wouldn't be much help in my situation.

I have been involved with the UK NHS most of my life. Firstly in my career and since retirement as a "patient representative" . I remain an advocate of the service because despite it's limitations the overall quality of care and accessibility is commendable.

Primarily, it's commendable because it's accessible to all UK citizens when they need it irrespective of ability to pay.

Unfortunately that also makes it difficult to sustain where there is increasing demand and finite funding.

This means that the choices that are available in other countries e.g. for choosing which doctor you see, aren't as optional here.

On recently seeing a NHS GP, (you have to be registered with a practice to see one, and you can only see one at that practice), she admitted knowing little about RLS and had never heard of augmentation.

We discussed seeing a neurologist. The only neurologist she could refer me to was one with a reputation of being abrupt and offensive. The same who diagnosed me years ago, prescribed up to 0.75mg Pramipexole with no explanation of side effects. She said I would have to wait at least 6 months to see him. She suggested I see a neurologist privately.

Here we go!

Yes you can "step outside" the NHS in the UK. but then you either have to pay up front or pay private health insurance. ON TOP OF the taxes you're already paying to fund the NHS.

I said I would. I was then left to my own devices to find a private neurologist. I managed to find the names of some private neurologists. One was local. He was the same NHS guy I saw years ago.

I found a few others dotted around the country, but none of them mentioned RLS.

I gave up!

This is where I would welcome a list of recommended RLS specialists, if there are any in the UK.

Not that I could afford to see any. At least I'd know so that if I got any more desperate it would be an avenue I could explore.

[goodolfin in reply to Hidden]

I found your post very interesting, and I strongly agree with all your comments regarding our health system in the U.K. It is bizarre that we don't have some sort of 'list' of rls specialists in this country. I'm a member of the U.S.A. equivalent support organisation - rls.org - and they have a network of support groups. Clearly their membership is much bigger than here due to the size of the country, but they do seem better organised in this respect. I would also commend them for their quarterly magazine, NightWalkers. I digress - so how can we make this suggestion 'fly' ? Do any of the mediators for this site have any suggestions ? Perhaps it's been tried in the past ? Surely it's worth exploring further if we want to improve our self-help from this awful condition ?

[Graham3196 in reply to goodolfin]

It's a difficult problem. A simple approach would be for anyone who has been well treated by a doctor to post the doctors name. One problem is that anyone who has been really well treated will probably not be reading this forum because they have a life to enjoy!

The UK members have an extra problem in what to do with this information once they have it. That's a UK political problem that only they can solve. It seems that UK patients can get any treatment they want if they can afford to pay for it. An iron infusion is not cheap whereas the drugs are. I think it would be better for the taxpayers if everyone could have an infusion and it resulted in 50% getting off the taxpayer subsidised drugs. But how do they do that?

In the US I have the impression that payment for an infusion (for example) depends on which company your employer has chosen to supply medical insurance.

Just starting a list of doctors who have either relieved your symptoms or tried to help would be a good starting point to helping ourselves. Perhaps the management could organise a mail out to people who were here 10 years ago and not here any more to ask them if their absence is because they have been "cured".

[Graham3196 in reply to Hidden]

Wow That's pretty depressing. Thanks for explaining this. I didn't know how the UK system worked although I have learned a bit from "Yes Minister" and "Doc Martin" When I was last in the UK (2013) I was sick so I walked into a doctors surgery in London, waited for about an hour and was given some drugs that fixed me within a day. No charge so I thought things had changed and I was quite impressed.

I am fortunate in that I can visit several GPs to try to get the treatment I want. I would still be grateful for a system that told me about a GP who had success treating someone else for the same disease.

[Hidden in reply to Graham3196]

I still prefer knowing that I can get most necessary treatment without additional cost even if it limits my options. I even accept that the taxes I pay funds treatment for those that aren't able to pay taxes.

There are a lot of economic and political factors in the NHS equation. One is that if a GP refers a NHS patient to a NHS specialist then there is a cost involved as the organisation which employs the specialist has to be paid. You can't see a NHS specialist without such a referral. Since it's cheaper per patient to have a block contract with the "provider" organisation than a separate payment for every single patient, this restricts the choice. Although it's theoretically possible to be referred to anyone, this doesn't really happen in practice.

GPs refer more often than not to providers who hold a contract for a particular condition/treatment.

Another factor is that most secondary health services rely on being paid for the services they provide (providers) and the payment comes from local Clinical Commissioning Groups (purchasers) who have contracts with the providers. The CCGs get their funds from the government and they purchase services for the local population. For example, a CCG in London pays for services for people living in London, a CCG in York pays for people living in York.

There are lots of providers, some them NHS "trusts" but some not. There are also lots of CCGs. This can result in what's called a "health postcode lottery" where the services you can get depend on where you live.

The. "NHS" as such is a logo and a concept. There is no single national provider service.

That's the political and economic aspect. Politically it didn't use to be like this.

Furthermore, services and treatments are prioritised. More funds are given for more necessary treatments and for more effective treatments.

RLS has a very low priority. Waiting time to see a neurologist 6 months or more.

If GP suspects cancer HAVE to see a specialist in two weeks and start treatment in 6 weeks.

There are advantages, a lot of the work is done to select the right specialist for you. Specialists are paid a salary, not paid by results or numbers or patients so their advice on treatment is not as biased. Specialists may also work in teams e.g. A surgeon, an oncologist and a radiotherapist will discuss a cancer case together.

NHS organisations are publicly accountable and there are built safeguards and advocacy services.

By "going private" you can bypass the waiting, but the treatment may not be any better.

It's swings and roundabouts, but Yes, wouldn't it be great if there were a national registry of neurologists specialising in RLS. They're just registered as neurologists and RLS isn't a priority.

[Graham3196 in reply to Graham3196]

A joke on me. Just to put the record straight I didn't understand how sick I was. My family took me to a hospital emergency center because they had no hope of seeing a GP. I was unaware of what was happening. By the time I was better we had other things to do than discuss the British medical system so all these years I thought it worked pretty well!!.