According to a report, funded by Sanofi Genzyme and conducted by Adelphi Research UK, The UK has one of the lowest disease modifying therapy (DMT) treatment rates in Europe (21%), with quarter of UK patients not aware of the DMTs that are available to them.
The report, titled The Missing Pieces, was produced from the results of an online questionnaire, which was given to 100 healthcare specialists, including neurologists, and 120 patients with all types of multiple sclerosis (MS) in 2016.
It is stated by professional bodies, such as the Association of British Neurologists (ABN), that measurement of disease progression and offering treatment as soon as possible is important.
The NICE Quality Standards for MS recommend that people with MS have access to care from a multidisciplinary team with expertise in MS and access to a comprehensive review of their treatment and care annually.
The MS Forward View: A Consensus on the Future of MS Services, published in November 2016, also stated that ‘MS teams should offer everyone with MS a comprehensive annual review with an appropriate health professional who has specialist expertise in MS’.
Despite these recommendations the report found that 36% of people with MS had not seen a neurologist in the past 12 months and overall one in ten said they’d not seen a neurologist recently but felt they needed to.
The report highlights that people with MS are in contact with a multidisciplinary team which can make it challenging for them to identify or access the right healthcare professional to help them with their treatment decisions. The most common key contact for healthcare and support in relation to MS is a specialist nurse, with 45% of patients claiming their primary healthcare specialist was an MS nurse. However, 20% reported turning most to general practitioners, when it is MS specialist neurologists that would initiate, for example, a DMT treatment.
With the recent treatment advances, access through a multidisciplinary team of HCPs has become a widely-debated topic. The My MS, My Needs Surveys by the MS Society focussed on access to treatment in the UK and revealed big disparities in the services offered from one part of the country to another.
Recently, a follow-up survey involving 11,024 people with MS across the UK showed that over the last three years, access to DMTs in England among those who could benefit has increased. However, the UK still has one of the worst rates of DMT use in Europe.
As well as difficulty in prompt access to treatment many people with MS are still not receiving advice about delaying disability from their health care professional (HCP). Many people naturally learn about relapses when they are diagnosed but not about potential disability. When asked, two thirds (65%) of people with MS say maintaining independence is their main treatment goal, followed by reducing relapses. However 22% of people with MS say the HCP they see does not discuss treatment goals with them.
Around three quarters of HCPs think people with MS face delays in being initiated onto a DMT in particular, with the main reason being limited access to MS specialist neurologists. This means that even if people with MS do have treatment goals, the care system in the UK does not necessarily allow them to be met.
The NHS Five Year Forward View highlights that prevention is a key priority to making the NHS more sustainable, and early access to MS specialist neurologists and treatments is something that could contribute to this sustainability.