Delays in Seeing Specialists a Growing Barrier to MS Diagnosis and Treatment

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MS diagnosis and specialist referrals

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There can be absolutely no excuse for anyone experiencing the first signs and symptoms of neurological conditions like MS having to wait a long time to see an appropriate specialist, such as a neurologist. Delays in seeing specialists is a complaint often heard from patients in various countries, and it has now been highlighted in the U.K.

Of course, it has been going on for years. I remember that in early 2002, my family doctor suspected I had multiple sclerosis but referred me to a general consultant at our local hospital, instead of a neurologist. But he did that for a very good reason.

Robin, my doctor, explained that a referral to a neurologist by a general consultant in the same hospital would get priority over a referral from him as my GP. It worked. After seeing my GP in January, I was with the general consultant within two weeks and the neurologist in another week. Then after a series of tests, including an MRI scan, I was diagnosed just three months after going to see my GP.

Robin explained that the waiting time (in 2002) for a neurological appointment, based on a GP’s referral, was close to six months.

Now, a new study involving over 1,000 GPs across the U.K. has found that most of their patients who present neurological symptoms have an even longer wait.

The Neurological Alliance, the only collective voice for 80 organizations working to make life better for millions of people with a neurological condition, published a report on Aug. 15 into the views of GPs on the initial assessment and referral of people with signs of neurological problems. I think its findings are disgraceful.

It states that the majority of people with neurological conditions wait over 12 months between the time they first arrive in primary care and the time they receive a confirmed diagnosis. For the majority, this wait involves five or more visits to a GP before referral to a specialist. I was fortunate as my GP did not hesitate; he referred me on my first visit.

The report finds that GPs lack confidence that patients referred with a suspected neurological condition are able to access specialist services in a timely manner. GPs, it reports, have significant concerns around levels of access to secondary care services, including neurological specialists, multidisciplinary teams, and MRI scans.

Delays in seeing specialists a barrier to timely diagnosis

The MS Trust, commenting on its own data due to be published in the autumn, says it indicates that MS neurologists are as concerned about these issues as GPs, with two-thirds saying the waiting time for a new consultant neurology appointment is a barrier to timely diagnosis, and with nearly a third highlighting access to an MRI as an additional barrier.

Naturally, GPs are the first point of contact for people experiencing the first signs and symptoms of MS. They rely on their family doctors to provide an accurate initial assessment and a referral to the right specialist. This enables patients to receive a diagnosis and access the correct treatment, support, and advice as soon as possible.

However, this is not happening fast enough.

Alarmingly, the report also indicates that GPs are significantly less confident about making an initial assessment and referral for people presenting with signs and symptoms of MS than they are for other neurological conditions. A significant majority of GPs feel they would benefit from further training and support on identifying the signs and symptoms of neurological conditions and how to best manage them.

I am sure you will agree that wherever we are in the world, in whatever country, we patients deserve better.

Neurological Alliance CEO Arlene Wilkie said: “It is essential that NHS (National Health Service) England and the Department of Health respond to these findings and engage with the concerns of GPs and people living with neurological conditions. Without an effective pathway through primary care, patients will continue to suffer the consequences of undue delays to referral, diagnosis and treatment, and outcomes will continue to suffer.”

MS Trust policy officer Amanda Croft said: “This report makes disappointing, though not surprising, reading. We are concerned that less than half of GPs feel confident about making an initial assessment and referral for people presenting with signs and symptoms suggestive of MS. Early diagnosis means early treatment and better outcomes, which is good for people with MS and for the NHS.

“Only a neurologist can diagnose MS and then hand the care over to a specialist MS team involving MS neurologists and MS nurses. GPs are the gatekeepers to diagnosis and need more information and training to understand when to refer and the importance of not watching and waiting.

“The MS Trust will continue to work closely with the NHS to help make sure everyone with MS can get prompt access to an MS specialist team.”

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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Ian Franks is Managing Editor of the Columns division of BioNews Services. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist MS, Health & Disability blog at Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.
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  1. Anon says:

    Unfortunately I had this problem. As a young, otherwise healthy person, my PCP spent a LOT of time (3 years) dismissing my symptoms as other things (vitamin deficiencies, nerve entrapment, orthopedic problems). Every year at my annual exam I would explain that the numbness in my hand and arm was still present…. and every year they would send me to at least two different specialists for testing, EXCEPT never to a neuro! I did request imaging but one of the NPs replied with “you’re fine – you’re too young to have anything big wrong with you and MRIs are expensive.” (Sigh.) I was too young and scared to argue and wanted to believe it was something minor…. until I had my second relapse. Then I definitely demanded to see a neuro. Even after the demand, the PCP made me try taking iron supplements for four weeks to see if the numbness would dissipate. Luckily when I did finally get to see the neuro he diagnosed me immediately…. But holy cow!

  2. Agnes Weessies says:

    My son presented with all the symptoms, and they thought it might be MS, but he went to the ER due to the inability to work, and no insurance, it was the only place to see a Dr. for him. They just released him and said see a neurologist. Sad thing is, if you don’t have insurance, you can’t see a neurologist. Second time a year later, my son was literally dying. His internals were shutting down. That ER doctor suspected the same, but this time she took the initive and admitted him. The staff neurologist saw him within hours. The diagnosis was made the next day after an MRI. He was given steroids first, then after 5 days transferred to an in patient rehab to do concentrated therapy. When he was released a month later, he was told to see a neurologist for treatment. Well it took me 6 months fighting with medicaid, and the state, plus throw in social security, before I got him an appointment. It took me 6 months of being a female dog name to get that appointment. The neurologist made the comment that it was very unusual because NO ONE on medicaid ever gets in to see a neurologist. You have to wait until a 2 year period has passed and you get disability proven, and you are eligible for medicare. That means if you are lucky it is only a 2 year wait. Then you have to wait at least 6 month after that before you can get an appointment. Well if that had been the way my son had gone he would be dead. 6 months to the day after being released from the hospital, he was back with all the same symptoms out of control. That was on a Friday. He was scheduled for his first treatment, an infusion of tysabri on the following Wed. The staff neurologist this time was different. He wanted to yell at me for not getting him treatment. I stood toe to toe with him, and said do you take medicaid? He said no. I told him no one else will either until I went to battle over it. He backed down. Then my son was released on Monday. Tuesday, caremark who oversees all the prescriptions for medicaid, had a nurse practitioner who decided she needed to review the treatment and see if the Dr’s knew what they were doing and if the treatment was needed. That was at 4 pm on Tuesday. All the battles I had fought so far had taken days if not weeks to see outcome. After numerous phone calls, and emails, my son’s time period of 10:45 am passed. At 11 am we got a call from the infusion center, it was approved and could we get there in 1/2 an hour. We were there in 15 minutes.

    My son has now had 3 infusion, 28 days apart. He is regaining slowly his ability to walk, but not unaided. If he has to rely on a walker and a cane if he is feeling well, so be it. The once vibrant 31 year old now looks at possibilities instead of what he has lost. All because he didn’t get timely treatment, and see the neurologist the year before when it all started. Shame on the ER’s for turing people away. Shame on the insurance companies who are the true roadblocks. Shame on the government for allowing the system to get worse not better under the Obamacare system. Shame on medicaid for paying $14 to the neurologists. A neurologist has overhead and if he spends 1/2 an hour assessing and dealing with a patient who has MS, He can’t begin to meet his overhead. It’s not the neurologists, it is the insurance companies that are hurting MS patients in the USA

  3. C L Howell says:

    I can relate to this article. After about 7-8 years bouncing around with a PCP and individual specialists, having countless tests and getting progressively worse, my insurance was changed to Kaiser. In short order, I was promptly and appropriately attended to by specialists and received a diagnosis…..all in about 8 mos. I am now on MS medication, and am having therapy to assist with effective communication, safer walking and an understanding of how to deal with cognitive impairment. Our regular medical system is too fractured. With my current provider, I have quickly found myself in the care of specialists who really communicate with one another in real time. I am still preoccupied with what the future holds but am confident I am on a reasonable track.

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