At ‘the Way Forward’ on 1-2nd November, health care professionals were specifically in attendance to tackle the problem of variance in multiple sclerosis (MS) services. As Professor Gavin Giovannoni noted when he summed up progress midway through the event, unwanted variance could just as happily be referred to as ‘inequality’ and this is what Prof Paola Dey presented on at the beginning of day two.
‘ ‘Variance’ is perhaps a more positive term than ‘inequality’ ’,
Gavin noted as he recapped the first day and confirmed to the room that this movement aims to do more than solely tackling variation in prescribing practice, equitable access to disease-modifying treatments, or access to quality rehabilitation or palliative care. As a collective, we are seeking to tackle variance, inequity and inequality across the whole care pathway for people living with MS at any and every stage.
Paola Dey, professor of health and social care at Edge Hill University, was well placed, then, to begin day two of the event with a set of findings from a comprehensive scoping review which in her words, ‘benchmarks the international evidence base for access to health and social care for MS patients.’
Presenting the findings from a widespread literature review of peer-reviewed articles, Paola gave a clear picture of in-country variation in access to MS services, predominantly across the United States and United Kingdom.
The breakdown of available literature was as follows:
‘A total of 4959 unique abstracts yielded 36 papers which met our eligibility criteria. Only 3 studies were cohort studies and only 4 were population-based; most were from the United States (n = 27). There were 6 studies on access to MS focused care and 6 on access to disease modifying drugs [DMTs]. There were 3 studies on access to prevention/lifestyle programmes and none on access to welfare services or information support.’
Taken from the paper’s Abstract
The evidence itself was telling in terms of the elements of access to services and support that have been researched for MS. Figure 1 demonstrates that whilst access to disease-modifying therapies, rehabilitation and mental health have all been investigated and evidenced in a number of peer-reviewed articles, lifestyle, welfare and prevention all have little or no evidence relating to them. Paola pointed out that the majority of articles were published recently, highlighting that inequity is, perhaps surprisingly, a fairly new area of enquiry.
The scoping review, which looked at the whole patient pathway from prevention and lifestyle modification through interventions to welfare, found that geographical location and socio-economic status affect patient outcomes. Findings suggested an impact on access depending on a rural or urban location. Whilst much of the data was from the United States, and the UK has nowhere near the same geographical extremes, discussion from the floor at ‘the Way Forward’ noted areas of rural Wales and the Highlands as bearing particular relevance here, especially as people’s MS progresses and travel becomes increasingly difficult. The room felt that research into travel implications to MS centres of excellence, not only in terms of distance but time, and even route, would be beneficial in understanding barriers to service access.
The scoping review found that access to services generally tended to be worse amongst men, older age groups, those from lower socio-economic groups or the least educated, non-caucasians, those with mental health problems and those from rural areas. However, despite these findings, there were no clear cut lines of inaccess, with women less likely to see a urologist or have a powered wheelchair and younger patients less likely to be in receipt of personal assistance.
In the studies regarding access to disease modifying treatments, older age and lower socioeconomic status were consistently associated with a lower rate of uptake, while race and gender were not.
Paola’s research team recommended that inequalities or disparities in access to all levels of services and treatments need to be addressed through a strategic research agenda with an emphasis on population-based studies and development and evaluation of interventions to reduce inequality.
A comment from the floor shared concerns that some of the poorest provision of services is for those who are most disabled and cannot get access due to their level of disability. Their concern was that ‘this is an invisible group when you look at this data’.
Other concerns were raised around the lack of data available from the UK in this study given the level of data collected. This echoed discussions around the event and the observations of other presenters, such as Professor Neil Robertson who noted that
‘the real world data situation in the UK is that we are lagging well behind any other developed country.’
Where we need to turn our attention
Discussion in the room turned to areas we should be researching to better understand contributing factors to inequity of service access, such as the increasing centralisation of specialist services. Gathering data on the travel time and distance a person with MS has to go to their centre versus their health and wellbeing outcomes was one such area suggested.
Social wellbeing and social prescribing also drew discussion. Delegates observed that people with MS who engage from a social perspective do much better in terms of health and wellbeing outcomes, something being backed up increasingly in research. The challenges that can come with social isolation were highlighted recently in mainstream media through the drama ‘An Instinct for Kindness’, based on the real life experience of a woman with MS who ultimately sought to end her life.
This discussion prompted the question ‘how do we incorporate social prescribing into our treatment models?’ There were also calls for more research into how we can be a supportive community of people and how we can use our social responsibility to full effect, as well as looking at data on where and how social prescribing is currently used in MS as a starting point to learn from.
Social prescribing and the need for community cannot be separated from the discussions held throughout the event around patient empowerment and activation and people like CEO of Shift.ms George Pepper led the conversation on how we can engage, connect and empower people with MS to self-direct their care, their community and to feel in charge of all elements of their MS and their lives.
Paola’s work highlights some of the socio-economic groups that, in tackling variance in services, we need to be careful to include. It also suggests that as we seek to reduce variation and increase equity of access, we need to consider the reasons why those groups struggle to access services. Not only do we need to think laterally about how we effectively link people with MS and the services and support that they need, but how we engage with those groups to ensure they know how and where to actively seek this same support themselves.
Watch this presentation:
Listen to this presentation:
- Read the academic article on Paola and Hazel Roddam’s work.
- Find out more about the MS Society’s campaign around inequity of service access, ‘Treat me right’
- Learn more about social prescribing and the short drama referred to in discussions around this ‘An Instinct for Kindness’ which portrays the real life experience of a woman with MS who becomes increasingly isolated and chooses to end her life at Dignitas.
- Read the overview of George Pepper’s presentation on patient empowerment.
- More spotlight articles for an in-depth look at some of the key issues raised at the Variance event
- Register for our follow-up meeting 2019: MS Service Provision in the UK 2019; Raising the Bar
Posted in: MS Variance