My name is Kimberley Bradfield and I am a clinical negligence solicitor at Switalskis Solicitors. Switalskis is a large firm that specialises in clinical negligence and has offices across the UK. We have successfully settled a number of clinical negligence cases relating to the negligent treatment of RLS, obtaining monetary compensation for our clients.
I was recently recommended by a member of this group and having looked at the forum and discussed with a member of RLS UK, I thought it would be helpful to explain, from my experience, the most common failures in relation to the treatment of RLS.
The main failures that I have seen fit into the following categories:
1) A failure to measure serum ferritin levels in patients with RLS. The CKS guidance (“Clinical Knowledge Summaries” - NHS guidelines for general practitioners), among others, state that serum ferritin levels should be measured in all patients with RLS before prescribing any medication. This is done via a simple blood test. Measuring blood iron levels is not sufficiently sensitive for RLS. It must be serum ferritin which is the protein that transports the iron around the blood. Low serum ferritin levels can be the cause of RLS and if this is the case, the symptoms can be eased and sometimes resolved with iron supplements alone. There may therefore be no need for prescription medication at all. We have obtained expert evidence stating that where serum ferritin levels are not measured in patients with RLS prior to the prescription of medication, this is a breach of duty.
2) Where it is reasonable to be prescribed dopamine agonist medication in accordance with current guidance (such as pramipexole and ropinirole), I have often seen a failure of GPs and neurologists to warn patients of the side effects. It is very important that patients are aware of the side effects of dopamine agonist medication as they can be debilitating and some of them are not what you would expect. The side effects include, but are not limited to, impulse control behaviours which can include extreme insatiable hunger, compulsive gambling, reckless and uncontrolled spending, and hypersexuality. These behaviours have the ability to cause relationships to break down, cause patients to lose their job, cause grave financial loss and negatively impact their whole life. We have had several cases where patients have not been warned about the side effects, and so when they started to experience them they did not know why, and did not link their symptoms to the medication. They therefore hid these behaviours from their families and did not seek the help they needed. Whilst I cannot give medical advice, if you are taking dopamine agonist medication it may be helpful to discuss any side effects with your GP, so that if you start to experience these sorts of problems, you can tell your GP straight away and discuss an alternative treatment plan.
3) If you advise your GP that you are experiencing such symptoms from a dopamine agonist medication, it would be a breach of duty for your GP to stop that medication, and prescribe another dopamine agonist medication. Dopamine agonist medications have the same side effects and therefore it is unlikely that your symptoms will resolve with a different dopamine agonist medication. For example, we have succeeded in a case where pramipexole was switched for ropinirole. Obviously, this did not relieve the side effects, and the compulsive gambling continued. There are alternative medications available that have less debilitating side effects (such as Gabapentin and Pregabalin) that may be able to be prescribed instead.
We have been successful in establishing that the above failures have amounted to a breach of duty and that the compulsive behaviours were a direct result of this breach. We have been successful in obtaining monetary compensation for the associated psychiatric injuries and financial losses, including extensive losses from compulsive gambling.
It is important to advise that clinical negligence claims have a time limit of three years from the date of injury or the date of knowledge. After this time the claim can no longer be brought, regardless of how strong it may otherwise have been. ‘Date of knowledge’ means the date when you first became aware that your treatment may not have been reasonable, and might have caused you some harm. For example, if you have been experiencing compulsive behaviours following the prescription of dopamine agonist medication and you have not had your serum ferritin levels measured, your date of knowledge will be the date in which you realised that the compulsive behaviour is caused by the medication and that it was a breach of duty to prescribe such medication without first having your serum ferritin levels measured. It could be that your date of knowledge is the date that you read other users comments on this forum, or it could be the day that you read this very post. As you can see, the date of knowledge will be different for everyone and so it is important that if you think you might have a clinical negligence claim, you contact a Solicitor as soon as possible.
I hope you have found this post helpful. If you think you may have a clinical negligence claim and you would like to discuss further, please do not hesitate to contact me using the following link:
Thank you SO much for this helpful and informative post.I am delighted that the expert legal advice confirms that failure to ascertain serum ferritin levels and switching patients from ond DA to another is a breach of duty.
That information will help many people on this site advocate for themselves when their GPs and neurologists refuse to treat them correctly.
RLS UK campaigned to get RLS included on the medical curriculum. The RCGPs refused.
I really hope more people decide to take legal action. The medical profession might actually start to listen to us, learn the basics of RLS, and treat us correctly.
Suffering doesn't seem to matter. But money talks.
HiBringing a claim is what I asked about on here in the last week or so.
So I'm very interested reading your post and will be calling.
Its 6.22 am as I write this, I have been wakened after breakthrough rls, since 3.50 am
Iv was not offered a ferritin check despite several visits to my Gp when experiencing worsening symptoms, the dose of pramepexole was just increased (doubled)
I only found out after being pointed to this site, that ferritin was a thing ! and should be checkrd and argumentation was what had happened.
Iv suffered other side effects too that I'll discuss when I call.
Hi Kimberley, great to inform people here of their legal options and yes eventually enough action should lead to greater recognition of RLS in the medical defence organisations and eventually filter through to the doctors. Certainly, we have seen that 'cowboy ' cosmetic surgery in Australia is more effectively controlled by insurance limitations than regulatory limitations (although that is catching up).
Ideally jump a step forward and have articles written in the medical defence newsletters to inform GP's of this risk. I would have thought a cautionary tail-type story on RLS and how a GP/Neurologist/Sleep physician may get sued would catch some interest.
If only. We have been trying to do this on the UK. The RCGPs has 'ghosted' the UK charity, RLS-UK and no longer responds to their letters or emails. They made it clear that RLS is adequately dealt with.We know that is patently untrue.
There have been numerous articles in newspapers and scholarly journals.
No one seems to take notice.
It's like wading through treacle.
The ABN acknowledge there's a lack of training and knowledge, but correctly point out that RLS should be dealt with at the GP stage.
However, I do think in many cases doctors are honestly doing their best as they see it for their patients.
In my opinion, in many many cases it is that doctors simply do not know enough about rls and rather than going down the legal route I personally feel doctors need training in rls & how to treat it.
Most GPs have to learn about rls from their patients rather than the other way round.
Ok I am lucky enough to have the most wonderful GP who is so receptive & actually asks me " what do the forum think".
He has learnt from me, read everything that Joolsg sent from the Mayo clinic & done so much research and has now given a talk on rls to the other GPs in their practice.
I know this is more the exception than the rule but I do think the medical board need to incorporate the study of rls in their training.
I am not in the medical profession but I just think many doctors do the best they can with the little knowledge they have.
I hope there are others on the forum that agree there must be more training.
Absolutely agree that most ' do their best' and the last 3 GPS iv had contact with knew what rls was ,what argumentation was, how to treat it.Given that these days you've to get past a receptionist who you've to tell why you want an appointment.
If you can even get an appointment !
And records are computerised, that a quick search taking minutes of our file or the drug we're on would be prudent and come under a duty of care.
It's a bit remiss given the technology now,
And same at the many meds reviews.
' this lady has been on pramepexole 10+ years, with increasing amounts prescribed, is it still relevant '
I agree education is needed or in the least med contraindications updated as and when a sleep deprived,tearful. Some times suicidal patient presents.
If bringing claims helps highlight the plight of us who's lives have been and still are being destroyed by rsl or plmd and the mass prescibing of DA,s then great. I'm all for it
We've been left to seek out forums such as this for self help and answers in absolute desperation.
RLS-UK have tried that route. The RCGPs refused to teach RLS and said most GPs would know how to research and treat it correctly.We KNOW that is NOT the case.
There are a few exceptions. Your GP is good. My GP is good.
But when the top UK expert refuses iron infusions and switches patients to another DA after horrendous augmentation, and posts on here asking for guinea pigs for a trial of intravenous apomorphine, another dopamine agonist, there is a big problem.
I knew that RLS UK were working on persuading the RCGPs to educate medics but I didn't know they had come up against a brick wall and I can see from what you say that there is a big problem.
I really, really hope someone does. That would certainly cause other neurologists to take note, start to read the research papers, and learn the basics of how to treat this disease.
I would also add that I was advised (by other doctors in the past) by doctors of the side effects of pramipexole etc before I started taking them.
What doctors did not know at the time was that you must not simply suddenly come off those drugs.
I was switched from pramipexole to rotigotine patches & then back to pramipexole so I have been through all the ghastly scenarios.
But I still think the doctors at the time just did not have the knowledge but were doing their best with the small amount of information they had to hand.
So glad that you reached out to this group! Please, if you know of any firms in the US that might be interested in assisting us over here, that would be greatly appreciated.
Unfortunately I am unable to recommend a firm in the US who may be able to assist, but it is important to note that you approach someone who practices in your state.
I live in the USA in the state of Georgia. I have been on Ropinirole for over 20 years and have never been told the side effects or the ultimate effects of using this drug. Until I got involved with this forum I didn’t know how important iron levels were or about augmentation. I feel like I have been treated though the years by doctors that either didn’t know or didn’t care. Now I am seeking help to get through coming off this medication and I am having a very hard time finding a doctor that knows how to treat me in this situation. Although Ropinirole has gave me relief from my symptoms had I known then what I know now I would have went another way.
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