#ThinkSocial

At Barts-MS we #ThinkSocial. We hypothesise that MS is like other chronic diseases and is affected by social capital and the social determinants of disease (SDOD). In short, if you have high social capital you will have a better outcome and if you have a favourable social profile you will also do better regardless of the type of MS you have. We are now actively researching these issues and have posted about them in the past and review them in this short video. 

We hypothesise that you can increase your social capital by adopting practices to maintain and develop new relationships. These reciprocal relationships help you develop resilience to cope with chronic diseases such as MS. To this end, we are pleased to be involved with Oceans of Hope; a sailing charity that will ‘change the perceptions of multiple sclerosis by showing what is possible when people with a chronic disease are empowered to conquer their individual challenges, by engaging people whose lives are touched by MS and developing networks as a foundation for life-changing behaviours’

Saúl Reyes, our Social Capital ECTRIMS fellow, Sue Radford (MS Brain Health) and I are in Edinburgh today to support Oceans of Hope and to celebrate what they are doing for people with MS. Sailing in the open ocean may seem quite extreme, but you could launch and run your own initiatives locally. 

A lot of you were quite upset by my post of a patient of mine who is socially isolated and living on a diet of tea & toast. As a medical practitioner working in the NHS as it is currently configured I am relatively powerless to change this lady’s trajectory. This is why we need social prescribing and initiatives like Oceans of Hope, which promise to change things. 

I envisage a future when social prescribing will be part and parcel of the holistic MS service we provide and we will have much less social isolation and more importantly better MS outcomes and happier MSers. Or am I wrong? 

Marmite on toast: the social crisis and MS

Recently one of my patients chastised me for telling her off for her poor diet, which consisted mainly of bread. She lives alone, which may explain why she eats so poorly. She has marmite or jam on toast for breakfast, a sandwich for lunch and if she feels hungry another piece of toast for dinner.

Interestingly, my mother used to refer to her elderly stepmother as a tea-and-toast lady and I never knew why until I became a doctor. My step-grandmother, we used to call her Aunty Betty, didn’t do marmite but stuck to marmalade. She prefered lime to orange marmalade suggesting she had at least preserved her senses of taste and smell. She lived into her late 80’s and died of frailty. For those of you who don’t know the tea-and-toast syndrome is well described. The following excerpt is from Wikipedia:

“Tea and toast syndrome is a form of malnutrition commonly experienced by elderly people who are unable to prepare meals and tend to themselves. Their diets often dwindle to tea and toast resulting in a deficiency of vitamins and other nutrients. The syndrome often manifests itself as hyponatremia, a low concentration of the electrolyte sodium in the bloodstream, due to the lack of salt in the diet.

The syndrome often occurs once children have moved away, and a partner has died or is dying. An elderly person with nobody left to cook for, or without the skills to cook, will revert to a diet of simple foods such as bread, cheese and crackers, and canned foods. According to the New York Times, as many as 60% of seniors living at home are either malnourished or at risk of becoming malnourished. In addition to the problems lack of nutrients will cause, this state also means that the complications of other illnesses, even the common cold, can be much more severe.

Factors that lead to the syndrome include social isolation, psychological issues such as depression, illness, and physical limitations. Though less of a factor than psychological issues, the increased number of medications often taken by elderly people can also affect eating habits. These medications may suppress appetite, make food taste different, or affect how nutrients are absorbed, making it even less likely seniors will get the required nutrients. Typical laboratory findings for tea and toast syndrome include a low serum osmolality (hypotonicity) with a normal urine osmolality since antidiuretic hormone levels are normal.”

Maybe I should update the Wikipedia entry to include multiple sclerosis and other socially-isolating chronic conditions as a cause of this syndrome?  Interestingly, my patient is not underweight, which implies she is getting enough calories. She wants to eat other food, but simply can’t afford more nutritious meals, nor does she have the physical energy to cook because of her MS. Her story is not unique. Three years ago when we did a dietary audit of a group of our Barts-MS patients I was horrified at how poor their diets were in general. Most of our patients eat large quantities of cheap processed foods. The main reason is cost and convenience. I suspect with increasing austerity over the last few years things could have only gotten worse and may get even worse if food prices rise, as predicted, if and when Brexit goes ahead.

An editorial in last week’s British Medical Journal, by Michael Marmot, does not pull any punches. It explains why the social crisis is leading to a health crisis with knock-on effects. Marmot in his final paragraph states: ‘A stalling or reversal of long term improvements in health and increases in health inequalities are of great concern to anyone who cares about health’.  This applies to me as a neurologist working in the NHS. I see the impact of austerity and the social crisis is having on my patients week after week and it is getting worse. The question is what can we do about it? Yes, we. This is not something that can be tackled by one person it is something society has to address.

Our second variance meeting in relation to MS services, called ‘Raising the Bar’, in Birmingham next month (8th & 9th July) has a workstream dedicated to the social determinants of health. At the end of year 3, we want all participating centres to be working differently and managing MS holistically. This will include programmes to screen and manage comorbidities and promote lifestyle interventions. To make sure it is not only MSers in the top echelons who benefit most from changes in service provision we want all HCPs to adopt a ‘no patient left behind’ philosophy as part of this holistic management and embed this philosophy in all MS services.

How we make this happen with fewer resources is going to require ingenuity and a different way of working. We are going to have to create disruptive new systems to make sure that all people with MS, who are covered by a particular service, have access to that service.  We don’t want vulnerable, less educated, ethnic minorities or less well off patients to be disadvantaged by the service.

This is why we are reaching out to all HCPs and people with MS and their families to help us change the current and outdated ‘Victorian’ model of healthcare, which is configured around the HCP and to make the person with the disease the person who controls their care. I anticipate the changes happening gradually and incrementally; one brick at a time. By linking the changes to a national audit and the MS Academy, a platform to share best practice and resources, we will hopefully create an environment that will transform the way people with MS are managed in the NHS.

What concerns me, however, is how do we tackle the social crisis? Our patients not having enough money to buy food or access transport to attend group therapy to tackle social isolation? Surely we need more resources for the NHS and social care? Marmot politicises his Editorial by linking the social crisis to changes in government: ‘In the UK, the fact that the break in the long term rise in life expectancy began in 2011 and has been accompanied by an increase in health inequalities must lead to serious questions about whether the government elected in 2010, with its flagship austerity policies, made a difference for the worse’. This makes you worry that under the current government there will simply be no new resources for implementing our ideas. This raises many challenges and will make the task harder. We may have to mobilise a volunteer army of helpers or we are going to have to show senior NHS managers that the changes we are proposing will save the NHS money.

In a parallel editorial to Marmot’s, Rajan and Mckee remind HCPs that we have a duty to speak out. The following are a few excerpts:

…. Nothing Left in the Cupboards, by Human Rights Watch, describes a country in which tens of thousands of families lack enough food to live on. The second report, by Philip Alston, the UN special rapporteur on extreme poverty and human rights, also examines food poverty but goes much broader, covering the many ways in which successive British governments have been “dismantling the social safety net.” Neither report makes comfortable reading for the British government. The Human Rights Watch report talks of “a grim picture of the grinding reality that teachers are dealing with,” with children arriving at school hungry, without warm clothes or dry shoes. Alston describes a situation that is not just “a disgrace, but a social calamity and an economic disaster rolled into one.”…..

…… In 2002, Derek Wanless published a landmark report commissioned by Gordon Brown, then chancellor of the exchequer. It concluded that sustainable NHS funding into the future required a “fully engaged” scenario, with investment in action on the determinants of health allowing people to live longer in better health. Yet, since 2010, mortality has been stagnating and, for some groups, increasing……

……Yet the British government is currently in a state of near paralysis as it struggles with the Brexit process. And as Alston notes, “If Brexit proceeds, it is likely to have a major adverse impact on the most vulnerable.” When added to the damage that any Brexit will do to the NHS, the outlook is extremely concerning…..

…… Over 150 years ago Rudolf Virchow said that doctors are “natural advocates of the poor.” When, as Alston argues, “the government has remained determinedly in a state of denial,” it is time for all health professionals to stand up for those who are falling through the increasingly large holes in our social safety nets. We must do so not only for the individuals concerned but for the future of the NHS, which, as Wanless pointed out, cannot continue to pick up the pieces following failures by others…….

If the issues in this blog post affect you, or someone close to you, please do not hesitate to reach out to us or your local MS team. We are committed to improving the care we provide all of our patients with MS and that includes helping you with your social issues.  

Michael Marmot. A health crisis is a social crisis. BMJ 2019;365:l2278.

Rajan & McKee. NHS is picking up the pieces as social safety nets fail. BMJ 2019;365:l2360.

Skint Britain

Did anyone watch ‘Skint Britain: friends without benefits’ on Channel 4 in the week?

Skint Britain: friends without benefits’ looks at the rollout and impact of the new Universal Credit scheme for British people who are unemployed or unable to work. The ‘big idea’ behind universal credit is to incentivise people who are unemployed to work or at least to be shown to be actively seeking work in order to ‘earn their benefits’. The scheme makes some basic assumptions that the people need to be literate and be able to use a web or smartphone based database to log their job seeking activities. One of the young men on the programme clearly had behavioural issues at school and was excluded from education; the result is a 21-year-old man who is unable to read and write. He has been let down by the system and the very same system is now excluding him yet again. He seemed to like animals and was using his pet dog to help him forage and catch wild moles, squirrels and rabbits, to feed himself and his girlfriend. What type of society are we living in that in 2019 we are forcing some of our citizens to forage for food? Not to mention the increasing use of food banks to survive.

Annual figures from the Trussell Trust

Economists glibly refer to Britain as being post-industrial and in the throes of the 3rd industrial revolution, a euphemism for automation and un- or under-employment, without considering what we are doing to society. We are now a society of haves and have-nots; a society that is more divided than ever. The have-nots, who are touchingly, albeit tragically, portrayed in this Channel 4 documentary have little hope of getting out of the economic trap society has created for them.

On a personal note, I am seeing the impact of Britain’s new social policies on patients in my care. As you are aware most of my patients with MS are unemployed. As a result, a large proportion of my patients are on benefits and depend on these to survive and participate in society. A  typical example is Susan, a patient of mine with MS, who I saw in clinic last week. Susan has secondary progressive MS and lives alone in a small flat in an East London tower block. Susan’s benefits were cut last year and as a result she is finding it increasingly difficult to come out each month on her meagre allowance. The person who reassessed Susan for her benefits is expecting Susan to look for and find work. Susan is semi-skilled and has an EDSS of 6.5 and is probably 12-24 months off needing a wheelchair. Any thinking, compassionate, person should know that Susan is not going be able to find and do any meaningful work; not at this stage of her MS.

Before her benefits were cut Susan was able to afford to travel and visit her daughter and two grandchildren in the Midlands every month. This visit was Susan’s highlight of the month. Susan can’t afford the train fare anymore. Susan rarely goes out anymore and is becoming increasingly isolated. Not surprisingly Susan is depressed. Simply asking Susan about her typical day was enough to reduce her to tears. Susan is also being let down by the system. What Susan needs are meaningful connections and interactions; friends and family to make her feel loved and wanted. Should the neurologist’s job extend into the social domain of their patients? I would argue yes. If we are to adopt a treatment target that maximises the lifelong brain health of our patients we can’t ignore the social determinants of health, which have a massive impact of outcomes.

To help people like Susan and our other patients we are exploring several initiatives this year to try and increase the social capital of our patients. We are not sure what our social capital programme will look like, but is quite clear that we can’t simply manage the medical side of MS and ignore the social consequences of living with this disease in modern Britain.