Medicys follows the UK MRS advice for all its projects, in all countries
May, 13 2020
Chronic conditions are life-changing. In this series we ask people to share their wisdom as we all face unprecedented changes to our daily lives. Here are 6 pieces of wisdom shared by people who have readapted to life with MS, Rheumatoid Arthritis and mental health issues on how to embrace life, despite challenges you may face during covid19.
Don’t morn what you don’t have.
Susan, 54, lives with her husband in Cheshire. She has been diagnosed with Primary Progressive Multiple Sclerosis. “You can’t mourn what you can’t do. You’ve got to find the thing that gives you enjoyment. Try different things. Don’t put it off. You might listen to some music and like the artist and before you know it you’ve got into something. The trick is to get absorbed into something. I have a friend who had MS and had to give up her interests but then didn’t find any new avenues. That’s such as shame. You owe it to yourself to have a go and see what’s out there”.
You don’t have to do anything. Switch off technology and tune in to nature.
Chloe, 46, is a freelancer working in the creative industry. She has been living with eating disorders and anxiety since she was 19. “Shut your eyes and feel the breeze. When you are focusing on nature your mind hasn’t got room to talk to you with negative chatter. Or, when you are having a moment then walk it off. Just walk up and down your road. I don’t dwell on the past. I don’t live in the future. I guess I regret what’s happened only because it’s been so hard over so many years. I look for advantages in the person I have become”.
If you need help – explain to people how they can help you.
Anne, 52 from Norfolk diagnosed with Rheumatoid arthritis in 2007 she says she is “ridiculously happily married with a cute black cat”. “People aren’t good at asking for help. I don’t know if it’s a British thing – maybe we are too reserved. You need to talk to people and if you feel anxiety share it. If you need help you need to explain to people how they can help you. So simple yet so important”.
Use the experience of lockdown to appreciate the reality of your loved one.
Nancy, 54, lives with her husband, Martin and two children in Twickenham and has been diagnosed with Secondary progressive MS. “We have sharper insights into what Nancy’s day to day experience is like. You assume you know but until you are in a lock down situation you don’t really get a notion of what it is like to live on the ground floor of a house which is essentially your universe. Hopefully we have a better understanding of what that is like to a degree. We feel more empathic to Nancy’s situation. We are also getting on better with our neighbours. Our neighbour came round and gave us masks, and hand sanitiser. Might sound a cliché but it’s seems true that the universal trauma can bring people together rather than drive them apart”.
Focus on a positive direction. That’s what you need to win.
Dean, 39, lives in Edinburgh and was diagnosed with multiple sclerosis in 2012. Over the last few years he has completed a triathlon, seven marathons and is now a part time football coach.
“There’s a lot of uncertainly now and I can understand why some people are really struggling. When you have multiple sclerosis your brain is familiar functioning with unpredictability. Your day to day life is all about planning. How to get from A to B wherever that might be: work, or the move, on holiday. You need to focus on what is possible. I used to focus on what I couldn’t do – not what I could do.
I use a simple framework to organise my mind. ‘Be – do – win’. I ask myself everyday how is my Be- Do-Win today. I apply this to everything. It might sound American and cheesy – but it works. It’s a mind-set. Be is about being the best version of yourself. Do – you are going to have to be patient, calm and keep on going. Your attitude will result in your win, in your achievement. Focus on a positive direction. That’s what you need to win.
With this condition you learn to make the best of everyday. Make the most of what you have. I guarantee there is always something that can create good memories now. Sometimes you can get thrown onto a tangent but with the right attitude the right result will come. It’s that simple and it works”.
Be considerate to others and kind to yourself.
Anjali, 40, lives in Buckinghamshire with family. She was diagnosed with MS in 2008 and works as a translator and analyst for a business intelligence company. “I’m not the kind of person who spends their time feeling sorry for myself – worrying my life has changed. At the end of the day I have MS. What I can do is control the actions that I can take. I can control how I react to it. You have to think how to move forward, it’s easy to shut yourself away. Everyone will be a patient at one stage of their life. Now we realise how much we can do together and how we can support each other. It’s just unfortunate it’s taken a global pandemic to make something like this happen. My advice is, be considerate to others and kind to yourself. Avoid making unrealistic goals – it ends up making you feel bad if you don’t attain them. Don’t compare yourself to what other people are doing – particularly on social media. Find what works for you. Take inspiration from others but don’t feel you have to emulate them. You are on your own journey. You are in your own personal circumstances. If you have had a bad day just reflect on it and move on”.
April 30, 2020
Chronic conditions are life-changing. In this series we ask people to share their wisdom as we all face unprecedented changes to our daily lives. Today Creative Producer Chloe shares her experiences of life with mental health issues.
Chloe, 46, is a freelancer working in the creative industry. On the phone she sounds full of energy, bright with enthusiasm. I wanted to learn her feelings about isolation, given her journey, and what she has taught herself in order to stay safe and healthy in the time of corona.
“At the moment I am highly vulnerable”
When Chloe was 19 she had anorexia. She explained that she was in hospital for 3 months but didn’t recover properly and as a result abused alcohol and drugs to cover her mental illness for many, many years. In 2013 when she was 39 she hit a huge low. During the years that followed she was in and out of hospital until finally in January 2019 she was admitted as an inpatient to a NHS mental health ward for people with eating orders and threatened with being sectioned. She was discharged on the condition that she gained weight every week or be readmitted. By June last year she met her targets but in October she was struck down with pneumonia which she hasn’t fully recovered from. “It’s a respiratory disease so at the moment I am highly vulnerable as my immune system has been compromised.”
“Our minds are our worst enemies”
“When you have a negative thought it’s up to you to turn that around. Our minds are our worst enemies. And they are what we fight with”. I asked how she manages to do this. “I’ve been in isolation for 7 years because I don’t trust myself not to drink. So from 2pm onwards I’m home. Come 3pm I’m home and I’m safe.
“Reading has saved my life”
When you have an active and harmful mind that wants to keep giving me negative messages – you need to have tools that turn those messages around quickly. I don’t have Netflix, I don’t watch TV. My mind tends to wander. I’m a visual person – I don’t like the TV telling me what a person looks like. I want to work all that out. Reading has saved my life. I pick up big fictional novels and go into that world. It’s a lifesaver. You have to find things that make you happy. I know when I am about to slide and through books I’ve learned ways to manage this. Self-help books really help. Most people will roll their eyes but they work. A few have saved my life. Yes, seriously. Today I can pick them up and read any sentence and that can sort you out for the rest of the day”.
“People should remember that it’s OK to feel crap”
She explains that no one is protected against negative thoughts – we really are our worst enemies that this is true for all of us. “People should remember that it’s OK to feel crap. It’s OK to have low moments. People who have never had mental health issues, never had dark moments are now experiencing this roller coast of emotions. Many people don’t know how to deal with it. Fortunately I do”.
I ask how.
“The thing about isolation is that at any time there is always something to do. I do a gratitude list. I read the paper. I’m also good at switching off all my technology, unplugging and getting away from screens. I step outside to listen to nature. Try it. Shut your eyes and feel the breeze. When you are focusing on nature your mind hasn’t got room to talk to you with negative chatter. Or, when you are having a moment then walk it off. Just walk up and down your road. I don’t dwell on the past. I don’t live in the future. I guess I regret what’s happened only because it’s been so hard over so many years. I look for advantages in the person I have become”.
“Isolation is…failing to talk to people”
Chloe makes an interesting point about isolation more as a mental state than a physical one: “Isolation is also failing to talk to people – not telling them what is going on in your mind.” In an age of endless communication options, it is always possible to pick up the phone and tell someone what’s going on and this can help.
“It will pass”
Chloe’s past has prepared her well for coping with the challenge’s of the Coronavirus. “I’m managing, I’m really managing, I have extreme low moments but I know that they will pass. It will pass. Humans are impatient by nature. I’ve waited seven years to get onto the road to recovery. And Covid 19 – well as terrible as it is might be just another few more months or maybe another year.”
I was left thinking about how many other people in advertising are dealing with serious mental health issues or finding solace in drugs and alcohol. I found it worrying that Chloe was so good at her job she could consume drink and drugs during the day as long as the work was on schedule. Nobody saw the signs or knew how to help. For people with issues like Chloe’s, that must feel like one of the worst forms of isolation. Perhaps by spreading awareness and making it easier to ask for help, we can help others facing similar problems in the future.
This article has been developed by Naked Eye, Medicys and VCCP Health team.
April 24, 2020
LIFE IN THE TIME OF CORONA
Chronic conditions are life changing. In this series we ask people to share their wisdom as we all face unprecedented changes to our daily lives. Today Olivia, a psychotherapist living with MS, shares her experience.
“It’s always difficult when you lose something. The trick is to find what works for you. Try different things”.
I’m speaking to Olivia – over the phone of course as at the time of this conversation we are somewhere in the middle of quarantine. She’s 48 years old and lives with her husband and two children near Bromley. They are both in their early twenties but her youngest son, like Olivia, has his own healthcare challenges. Her 21 year old has cerebral palsy and her 22 year old has been a constant support of his brother over the years. Olivia has been diagnosed with MS and also has T1 diabetes.
“You need to step back, you need to re-adjust”
I asked her what advice she would give to people newly dealing with social isolation, given the limitations she’s faced with MS. “When I was diagnosed with MS about five years ago, I had to accept fatigue was the new normal. You can’t be so hard on yourself. You need to step back, you need to re-adjust. So I use the morning to do chores, like washing up and I’ll make calls before the family wake up. This is when I have the most energy. By the afternoon it’s pretty much gone. So I have a sit down. When I say have a little lie down I mean I need 3-4 hours on the sofa”.
Knowledge vs. understanding
As a nation we’re learning more every day on the impact of this new virus on people’s lives, many of us sharing a similar experience. Yet some of the experiences of people with MS are still misunderstood. Olivia explained the difference between ‘knowledge’ and ‘understanding’. “My sense of tiredness is completely different to the average person. Sometimes you speak to a charity or organisation that is really knowledgeable, but they don’t have an idea of what it’s really like to live with MS. There have been times I have been so tired I have had to crawl to the toilet”. “That’s our normal”
Day to day Olivia’s house runs like a hospital. There is a medical cupboard, a medical fridge. The day is punctuated by treatment routines and management. “That’s our normal but we’ve actually become more unified as a family because we understand each other’s needs better. We understand where each person is coming from”.
“Try different things – but keep trying”
I asked for Olivia’s opinion on tips for people struggling with the current situation. Is it about routine? Reaching out to people? Positivity? Limiting the amount of news we read? “Try different things – but keep trying. [For example]
“I trained as a psychotherapist, but that was on hold when I was diagnosed with MS. It was really hard to come to terms with that. But in 2010 I trained as an online counsellor and started doing online consultations with a few clients. Now I’ve found ways to put this to use again, working with a Facebook group called Frontline 19. The group was created by counsellor for NHS staff dealing COVID-19. There are already a 1,000 counsellors who have signed up. We help [NHS staff] understand that what they are feeling is normal given the situation. Doctors don’t allow themselves to be vulnerable. They can get upset if they are not performing 100%. They find it difficult to ask for counselling. Many don’t want to go to HR at their hospital. But the good news is that many have signed up to the website. They’ve given a lot of their free time to me, so it’s almost like I’m giving something back for all the help they’ve given me over the years.”
I thanked Olivia for her time and for sharing her story. Looking over my notes I saw the word ‘vulnerable’ came up several times, but the word ‘patient’ was never mentioned. And why would it be? ‘Patient’ implies someone who is passive during illness. Olivia thought about her alternatives and took action, using her expertise to support NHS professionals during the pandemic. Though it’s important not to put too much pressure on ourselves during this crisis, its inspiring knowing there are many possibilities open to all of us. References:
This article has been developed by Naked Eye, Medicys and VCCP Health team.
April 16, 2020
BHBIA guidance specific to MR with healthcare professionals (updated 16 April):
Given the healthcare-specific remit of the BHBIA, we want to offer members guidance and support when planning and carrying out market research (MR) during these difficult times, in particular in relation to healthcare professionals (HCPs).
We have further clarified the BHBIA’s guidance to reflect the latest evidence on feasibility of conducting market research during these difficult times. Our guidance remains focused on the need to give careful consideration to any communications with HCPs and be sensitive to the challenges they are facing.
Frontline healthcare professionals
Given the unprecedented strain on some healthcare professionals at present, members are asked to avoid contact with frontline HCPs for market research purposes, during this health emergency. By ‘frontline’ we mean HCPs such as intensive care or respiratory specialists, i.e. those under significant additional work pressure.
Other healthcare professionals
There are many healthcare professionals that are able and willing to participate in MR. However any work should be approached carefully.
Patients and non-HCPs
With regard to non-HCPs, it would obviously be wise to consider any potential sensitivities/individual circumstances and take a carefully considered approach.
Market research carries on
MR fieldwork can continue in these difficult times, however all partners in the MR chain must take an ethical and sensitive approach. We must adapt, be flexible and keep in close touch with what’s happening ‘on the ground’.
EphMRA : Covid-19 Healthcare Market Research Guidance
Advises: Take an ethical approach. Some specialities should be avoided for market research but other specialities are available. Be flexible and keep in touch with country developments.
Covid-19 Information and Resources
March 23, 2020
BHBIA guidance specific to MR with healthcare professionals: However, given the healthcare-specific remit of the BHBIA, we feel that additional guidance is needed in relation to contact with healthcare professionals (HCPs), especially as we have been made aware that in some cases doctors are being approached inappropriately to participate in primary market research at this time. Given the unprecedented strain on the time of healthcare professionals at present, members are asked to avoid non-essential contact and delay non-urgent contact with frontline healthcare professionals for market research purposes, via any medium, during this health emergency. (By ‘frontline’ we mean any HCP who may be directly or indirectly impacted by the crisis, such that they are under additional work pressure). We are not suggesting that there should be a stop to all primary market research, rather that members should give careful consideration to any communications with HCPs and be sensitive to the challenges they are facing. With regard to non-HCPs, it would obviously be wise to consider any potential sensitivities/individual circumstances that might warrant a cautious approach.
March 20, 2020:
MRS guidance to its members on the grounds of health and safety and public acceptability is that face-to-face research (including mystery shopping) should not be carried out in the current environment.
Independently, Medicys Limited has made the decision not to contact some frontline healthcare professionals for a period of at least 4 weeks, so they can concentrate on what matters most: public health and safety. A list of those we are not approaching at present is below:
Infectious/tropical disease specialists; Infectious/tropical disease nurses; Respiratory medicine physicians (pulmonologists); Respiratory nurses (pulmonology nurses); A&E (ER) physicians; A&E (ER) nurses; Paramedics/ambulance staff; Intensive care physicians; Intensive care nurses; Internal medicine (in the countries where they exist); ANY lab staff (community or hospital)
March 9, 2020:
The UK MRS has provided market research practitioners with some general advice to help when considering how to deal with the implications of the spread of the Covid-19 Coronavirus. The BHBIA strongly recommends that its members read the MRS’s advice. Market Research Society - Coronavirus, Covid-19 General Business and Research Advice
“The outbreak of Covid-19 continues to evolve and practitioners may have questions regarding what they should do in their businesses plus also contact with participants. This advice is based on current understanding and will be updated should government and health advice change significantly. It should be noted this does not replace government advice; it is meant to supplement the official sources with the addition of some research considerations. Remember to continue to check the up-to-date guidance on the government website.”
When approaching individuals to participate in face to face research interviewers/recruiters/researchers should:
- Avoid people who look visibly unwell
- Stand at least 1 metre (3 feet) away from the potential participant
- Carry tissues and bacterial wipes and throw away in a bin any which are used
- Avoid touching their nose, mouth or eyes
- Avoid any physical contact such as shaking an individual’s hand
When undertaking the screener questions (via online, telephone or face to face) to establish whether individuals are suitable for face to face research practitioners should add some additional questions which determine:
- Whether participants have visited or been in close contact with any individuals who have visited, or travelled through (via transfers, etc) any of the high-risk areas
- Whether participants are experiencing any flu-like symptoms
- Whether participants have been in close contact with individuals experiencing flu-like symptoms
Participants who respond to the screener questions which indicates they have a high risk of infection should not be recruited for face to face research. These participants however could be recruited for either online or telephone studies if obtaining such information is unlikely to expose the interviewer/recruiter/researcher to potential infection.
The Covid-19 screener questions, as they include the collection of special category health data, can only be collected with the informed consent of participants (see MRS Code of Conduct rule 31).
When recording the responses to the screener questions no inferences should be made to the actual health of the participant. Researchers are not health professionals. The screener questions being recommended are to be used to reduce potential risk to others involved in research (interviewers, recruiters, researchers and other participants).
During Face to Face Research
Before face-to-face research commences the screener questions to establish Covid-19 risk should be repeated. Any individuals whose screener responses raises concerns should be asked to withdraw from the research.
If participants are screened out prior to the commencement of the research, they should be refunded for any costs (such as travel) they may have incurred to participate in research.
When setting up venues and/or facilities being used for research undertake the following:
- Position participants and those involved in the research (e.g. researchers, moderators, recruiters, venue staff, hosts, interviewers) at least 1 metre apart from each other
- Provide hand sanitizer
- Provide adequate washroom facilities which have hot water and soap
- When providing refreshments ensure that the servers are trained to handle refreshments in an appropriate manner
- If providing goods as incentives, ensure they are wrapped/sealed before handing to participants
- Wear surgical masks in countries where masks are the cultural norm (e.g. Asia)
In some markets taking the temperature of participants may be acceptable but for many countries this would be considered intrusive. Furthermore, only those suitably qualified should undertake such health checks. Provide participants a telephone number/website/email address for your research team/organisation which participants should contact if they become infected with Covid-19 following a research project. Contact NHS 111 immediately upon receiving notification of any participants who have become infected with Covid-19. Act swiftly on advice from the NHS and/or Public Health England in relation to your staff and participants following the reporting of a Covid-19 infection.