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.
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.
Are these coffee and chat sessions open to anyone? Do I have to be a Barts patient?
At the moment this a pilot and will have to be limited to patients registered with our service.
Dear Prof G
I really welcome and appreciate your level of understanding for those with MS living on means-tested benefits, like myself. Also EDSS 6.5 and unable to work.
Social groups are great to encourage MS folks to attend. Those of us who live with severe fatigue however, are not going to be able to travel far to visit a group. My nearest MS Society social group (for example) would take me nearly 2 hours to reach by bus (let alone the travel sickness) and the same to return home. That makes it impossible for me to attend.
I would like to make a plea for the set up of smaller social groups to be based in various suburbs or satellite towns so that travel distances are acceptable (say half an hour or less). This is part of the social necessity that comes with MS.
Keep up the great work!
Laurie, West Devon.
I’m not sure whether this should be your services job (whilst it is a kind suggestion as always). I’m not sure to what extent there is regional variation but in my area the MS society & the therapy centres have something going on in the community at least a couple of times a week. It tends to be either yoga, mindfulness, physiotherapy (which cost about a pound each so are probably not appropriate), but also a free weekly meeting at either a cafe, garden centre or pub (which would be appropriate). I dont attend them because they arent aimed at my demographic, but I do make routine donations of cake (baking is good for my anxiety but terrible for my BMI & the therapy centre shares a car park with my gym so its a win/win).
My point is should you be putting your efforts into developing this or should you be engaging with what already exists in your community & trying to make it better. If you could gain a better understanding of what already exists & understand why individuals don’t use existing services you could help to improve those services & try to increase engagement. (I suppose more of a GP refers to slimming world model, opposed to a GP trying to manage weight loss model?).
Yes, really unfair. Those on current benefits should be untouched.put more restrictions on new ones.
In my area people on pip enhanced mobility (unable) to walk can no longer use hospital transport. Even if you have enhanced component of living part (unable to do anything by yourself). It is about capacity to be able to make it to these appointments not money you receive for being totally f…., people are skipping appointments which in the long run will make them sicker , more expensive.
No mention how expensive is hiring cab that can take you on a motorised Wheelchair.
As someone with MS for whom the circumstances don’t apply, such as you’ve described for Susan, I may not be best placed to comment. However, I do want to say how significant it is that you are not only conscious of these issues, but recognise the need to bring them to the fore and have them addressed, especially as a professional who can be nothing but inundated with the demands of your working remit and responsibilities.
I’d like to endorse all efforts to facilitate the social wellbeing of PwMS. The ‘But coming’ is that there also needs to be a high degree of consistency whereby all hospitals look to endorse and enable things like the coffee mornings equivalent to that being introduced at Bart’s. The sense of social isolation and deprivation doesn’t benefit from the notion that facilities and quality of care is only provided in London and the Southeast.
I also think that it shouldn’t be assumed that everything organised and provided should be about individuals with MS socially interacting with others with the disease. PwMS will gain some of the biggest benefit from quality time with a wide range of different others. Beyond financial this is one of the key loses in ceasing to work.
I applaud you for having this focus and endeavour, if I can’t help but feel it’s a drop in the ocean.
Good luck with it all!
Absolutely wonderful that you felt compelled to highlight the issues faced by so many people struggling each day due to the health issues and then I niversal credit fiasco. I’m not affected myself but one never knows what is around the corner. To use your position to do this commendable. Thank you for such a genuine display of compassion. Very rarely seen but much needed.
With fantastic support from Citizens Advice, I took the DWP to a Tribunal following their arbitrary decision on my PIP claim. The assessor from a private company _lied_ in her report.
The Tribunal found emphatically in my favour.
Don’t be afraid to take on DWP. They’re largely an inept bunch of disengaged morons.
Nice story. You can check on the Citzens Advice website about how much Universal Credit you are eligible for.
I think for those who can attend a monthly social meeting for people with MS it’s a brilliant idea.
Having originally been on tysabri the monthly infusion groups were important to me in order to chat and laugh with people going through the same thing however once stopping this treatment owing to being JC virus positive and being given Alemtuzumab that important social link was broken.
The link to your Ms nurse and neurologist becomes a lot weaker and infrequent with alemtuzumab which is a big negative actually.
Just an idea but would an online monthly social group for MSer not work?
It would be cheaper, less tiring and more accessible to everyone. You would also get a wider section of MS patients dealing with different aspects of the disease so advice and tips would be more varied.
It could involve video Skype or audio or script.
Your live chat about hsct was a great idea last month so similar more informal chat among patients would work I think.