Should we expect your GP or family doctor to take on more of the day-2-day management of your MS?
In the UK specialist physicians are called consultants because there was always too few of them to get their hands dirty with the day-to-day management of patients with special medical problems. General practitioners used to refer their patients to a specialist for a ‘consultation’ and then get a long letter back with instruction on how to manage their patient. In other words, GPs used to do all the legwork.
In the last 25 years, this has changed. For most long-term conditions, which have become more complicated in terms of their management, the NHS now expects multidisciplinary teams to manage these patients. This has changed the relationships between specialists and GPs and not necessarily in a positive way for patients. For example, we have to rely on GPs to prescribe and help monitor specialist medicines. Not all GPs feel comfortable doing this. If the medicine is off-label they often refuse to prescribe it. There are two reasons for this, (1) why should they pay for an off-label medicine and (2) why should they take on the risks of off-label prescribing. To overcome this we have to put in place so-called shared-care guidelines, which are designed to protect the GPs. Under a shared-care guideline, we have to start and monitor the new medication for the first few months, before the GP takes over the prescribing. The paperwork involved in prescribing drugs under a shared-care guideline is not trivial and takes many meetings and months to get in place, which is why we rely so heavily on our neuroscience specialist pharmacist. Neurologists don’t have the time or space in their job plans to take this on. Notice my use of management speak to delegate this task to our pharmacist.
Because we now see most of our MSers once or twice a year for MS-related problems some rarely see their GPs and hence fall through the cracks, i.e. they are not being routinely monitored for comorbidities (diabetes, hypertension, hypercholesterolaemia, etc.). This causes problems for MSers because MSologists and MS HCPs are not trained and do not have the time to screen for and manage comorbidities.
To implement the marginal gains philosophy into routine MS practice we are going to have to change the way we work with GPs and other community-based HCPs to make the management of MS and all its problems seem seamless to MSers. At the moment it isn’t. A large number of my patients have problems navigating the complexity of the NHS to get the care they need; this is not only community-based services but the services we provide within a secondary care environment.
The Canadian review below on the potential role of the GP or family physician in managing spasticity is refreshing. I see no reason why GPs can’t be upskilled to take on the day-to-day management of many of the symptomatic problems faced by MSers. Spasticity is just one of the symptoms that can be tackled, why can’t they take on bladder, bowel & sexual dysfunction, anxiety, depression, pain, sleep disorders, social isolation, falls prevention, bone health, immunosuppression, diet, smoking, addiction, etc.
What are your experiences with your GP managing your MS compared to your neurologist or MS nurse specialist? Do you think the communication between your MS service and GP could be improved? Do you agree with applying the marginal gains philosophy to the management of your MS?
Milligan et al. Demystifying spasticity in primary care. Can Fam Physician. 2019 Oct;65(10):697-703.
OBJECTIVE: To raise awareness of spasticity in primary care and clarify how to identify, diagnose, and manage it effectively and efficiently in patients with pre-existing neurologic conditions.
SOURCES OF INFORMATION: PubMed was searched for articles published from 1970 to May 2018 using the terms spasticity, spasticity in physical disability, spasticity in mobility impairment, and spasticity with family medicine or primary care. Other relevant guidelines and resources were reviewed and used.
MAIN MESSAGE: Spasticity is a common secondary complication in conditions such as spinal cord injury, multiple sclerosis, stroke, cerebral palsy, and other neuromuscular physical disabilities and can have a negative effect on health and quality of life. Factors such as inconsistent definition, poorly understood mechanism, and relatively low prevalence make spasticity seem like a daunting condition to manage. Furthermore, its variable presentation and effect on a patient’s quality of life, and its range of treatments with varying levels of evidence, can make treatment challenging in primary care and in other clinical settings. Family physicians play an important role in recognizing and inquiring about spasticity and its changes, triggers, and effects on function. Ruling out reversible causes is important. Many management strategies can be instituted by family physicians.
CONCLUSION: Managing spasticity might be unfamiliar to many practitioners. It is important for physicians to understand spasticity and the potential treatment options available to improve quality of life. The current review provides concise information on the clinical relevance of spasticity in primary care and how to assess and manage it effectively and efficiently in those with chronic neurologic conditions.
CoI: multiple
I agree that many MSers fall in between the cracks. GP’s manage most chronic disease with the help of a Quality and Outcomes framework that includes diabetes epilepsy and rheumatoid arthritis, for example, but not MS. It is were, then people with MS could be called in annually for screening for physical and mental co-morbidities as well as establishing a relationship with primary care hopefully before other illnesses come along.
NHSE currently wont include MS in the framework as it is not common enough (120,000 patients). Shared care guidelines for routine care of people with MS is an alternative, especially with the increasing federation of primary care.
The reason I visit my GP surgery is mainly for antibiotics for reoccurring UTI’s. I ask to see a GP but often get to see an advance nurse instead. I’ve had to educate them over and over again that as I have MS, only three days prescription of antibiotics, given as standard will not be long enough and 7 days is needed.
I prefer to see my GP, we have built a very good relationship since my diagnosis 8+ years ago.
Most importantly we listen to each other and exchange ideas. Over the years we have experimented with all the medication’s available to treat MS related symptom.
As it stands, I only take vitamin D daily, and painkillers as required.
The only problem I’ve had with the NHS is not getting prescribed Sativex.
I source this from outside the NHS and it helps my particular set of symptoms very well at present.
This has been a long process of elimination but it seems to work for me at least.
Treated with alemtuzumab 4 years ago, for which I had to fight with my neurologist to get.
After having been started on copaxone and then moved on to Fingolimod.
I’m extremely grateful for this relationship, as it avoids argument with undertrained so called MS nurses.
I’d say my GP & I are ahead of the game. New or worrying symptoms are never assumed as MS . She rules other causes out. Blood tests, referrals may be necessary, for instance bowel problems, is it or isn’t it an MS symptom. It was found in this case I had diverticulosis but chronic constipation. The latter treated with a Navina Smart System. After GP referred me to the Continence team. Much quicker than going through Neurology. But crucially, she knows me. So it may depend on whether MSers can get consistence of a GP. My GP encourages me to email her, to save us both the appointment hassle and if I need to be seen she advises me . My expectations are balanced too, of what she may have knowledge of when it comes to meds. Sometimes as patients we must work with our GP, they can’t know every new drug coming available.
I think you would find that a lot of delay in being diagnosed with MS is down to GPs not taking early symptoms seriously enough and referring promptly to a neurologist.
I am in the US. No such thing as interdisciplinary teams. Each doctor is a silo. After years I finally found a go who understands both ms and immunosuppresion but before that I was educating gp and staff over and over, arguing when I had a fever and they said they couldn’t see me for three days, I was even asked by the nurses what ocrelizumab was at each visit! Agree with your main point about gp care needed for marginal gains and maybe at the nhs it’s actually possible but in the US no one talks to each other and I have no idea how you’d even begin to try and implement something like that. I hope it works and we can learn from it. Meantime here it is on the patient to educate their non-ms physicians, not only is it exhausting it doesn’t offer any faith that these doctors really get it such that we keep bringing questions back to the ms doctor, the only one who really understands the implications of whatever might be ailing you at that moment as well as the implications of various treatment options.
A lot of GPs simply don’t know a lot about MS. I’ve seen quite a few different ones over the years in different places, having moved a lot. Looking back, some were blatantly negligent, all too keen to put my symptoms down to stress or something. Nowadays I seek nothing much from GPs, as, thus far, I have no symptoms requiring medication. I tend to feel they are generalists whose main duty is appropriate and timeous referall to specialists as far as MS is concerned. And otherwise there for run of the mill stuff.
I see my Neurologist and MS nurse once a year. I have no relationship with my GP, in fact I only found out recently that he retired last year and it has been suggested I pick a replacement from the surgery list. I try to keep up to date myself with the help of this blog. Both MS nurse and Neuro are there if I have any questions but they are not pro active and it is definitely a case of knowing what questions to ask.
Last year someone on a MS society forum says they asked their neurologist for Metformin. Their neuro had attended the Robin Franklin lecture and agreed it was a good idea.
I wish to have metformin prescribed. Do I ask my GP? Do I ask my neurologist? Will my GP say ‘Yes if your neuro agrees’? Will my neuro be offended if I request it of my GP first? I’ve increasingly learned that there’s a game of hierarchy going on too and as the patient it benefits you to get it right. This is an added stress to negotiating the minefield that is the NHS. I say this despite having a good GP and having had some quality intervention for my MS.
The metformin data is in animal models. I doubt your GP nor your neurologist would prescribe it. We really need to see clinical data showing a benefit. Trials are planned let’s wait to see what happens.
Thanks – this is what I understood of the situation having watched the Franklin lecture etc.
It was only reading of a PwMS saying that their neuro from the National Hospital for Neurology and Neurosurgery in Queen Square had prescribed the metformin that I thought I might be legitimately able to request a prescription.
Used to sit at my desk with my legs wrapped around my chair to keep them still. Didn’t think to mention it to a doctor until 20 years later. Then my Neurologist said “I can give you something for that”.
Never mentioned it even when I was having a relapse. No ones fault but my own. Didn’t really read about what might happen to me.
Seamless is most definitely not the word I would use, and I’ve only been diagnosed since last November. God knows how people who were diagnosed years back have found it!
GP is not interested in anything remotely connected to MS, that is a fact.
They RESENT having to sort/deal with MS related stuff because they feel that is the neuros job.
I seen a neuropsychologist few weeks back, they think I should be on higher dose of Prozac.
Told this to GP last week, who said they will write to the neuro to see whether they think that should be done. Seems to think they will have that answer within a week. (if that happens I will be astounded!)
The average turn around from seeing a neuro to them dictating the letter, to someone typing it up, to someone posting it, to it being delivered is usually at least a month. (yes I know there is ICE) but for my surgery that seems to work efficiently as a chocolate fireguard…
So from neuropsychologist, to GP, to neuro, to GP to see if I can get prozac from 20 to 40mg. GP seems to think it will make no difference (frontal lobe lesion that causes inhibition, word problems or broken brain as I call it–I have no idea, I am not the medical professional)
No wonder patients just give up and eat tea and toast.
I would echo what Ali has said in that the link between GP and Neurologist is practically non-existent in my experience. The MS Nurse does help to bridge gaps and coordinate care. But my impression thus far has otherwise been… Hmm… Disjointed. If I had a verruca or something of similar calibre, I’d be happy to go to the GP. But anything MS-related, I’d go to the MS Nurse. They play an essential role.
My neuro (In Canada) for the most part sees it as his purview to manage only DMTs, expecting my GP to manage symptomatic and off-label treatments (for which he is not comfortable doing). Fortunately we do have a Psychiatrist that rotates through the MS clinic to provide prescribing support to patients and sees 400 MS patients regularly. He is familiar and comfortable with symptomatic treatment and off label prescribing. Once a medication has been prescribed by the psychiatrist, the GP will then continue to fill it, even for something as simple as baclofen or Modafinil. I was surprised at this but I suppose not all physicians have the same comfort level with dealing with these areas.