MS-UK’s Head of Services, Diana Crowe reflects upon its latest report which gives valuable insight into the loneliness and isolation people living with multiple sclerosis can experience
Much of my time last year was spent exploring how people affected by multiple sclerosis (MS) experience loneliness and isolation and my findings are shared in our report that we have published this week. I don’t wish to repeat in this blog what is said in the report but rather reflect on my experiences whilst working on this project.
When I first started to scope out the work I realised that I needed to squirrel myself away at home one day a week to give me the time and space to research and read all of the amazing reports that had already been published and understand the landscape. This was a luxury to have this time (before we were all forced to work at home – thank you COVID-19!) but I soon discovered the irony of working on a project that was making me feel a little lonely and isolated from my colleagues.
As a community-led organisation, the next step was to reach out to the MS community to hear about their lived experiences. I always love this part of my job because it keeps me grounded and drives the passion that I have to really make a difference. We started by conducting an online survey which gave us a really good starting point and enabled us to drill down further into the challenges and barriers that the MS community were facing.
In the late summer, my colleague and I travelled the country on one plane, many trains and automobiles! We were so grateful to the MS Therapy Centres across the UK that opened their doors to us and enabled us to facilitate focus groups. The dynamics were different in each group – one was very emotional as people shared their experiences and tissues were needed and in others, we heard how some people used humour to deal with the challenges they faced. For example, someone pulled up their trouser leg to reveal a catheter bag and exclaimed ‘this is not a fashion accessory you know!’ We conducted telephone interviews with those we could not meet face to face and it was such a privilege to take this time and listen. Many cups of tea and cakes later we had a rich insight that has shaped the next steps you see in this report.
It has been a long time in the making and we had every intention of launching this report back in March but then we were all forced into isolation (thanks again COVID-19!) and we have all faced so many challenges both personally and professionally and it certainly did not seem appropriate at that moment.
However, this week is Loneliness Awareness Week and we felt this was the right time to share our work. This report and the recommendations within, build upon the work we are already doing and gives us a platform to develop new initiatives. This is just the beginning of what I hope will be an ongoing conversation and I encourage organisations to get in touch to talk about how we can build partnerships, learn from each other and keep this conversation alive. Only by working together can we tackle loneliness and isolation in the MS community.
Early summer so far has seen some glorius weather so far but, whilst some may bask in the fact that we’d normally have to pay to go on holiday to get this heat, others may have feelings on the opposite end of the spectrum. People who are affected by multiple sclerosis (MS) have widely differing symptoms when it comes to heat sensitivity. Here are some tips to help you in the hot weather.
1 ) Think about your clothing
Whilst wearing shorts or loose clothing are obvious ways of keeping cool, changing your choice of footwear ican make a big difference, too. Wearing trainers or closed-off shoes can affect your whole body in hot weather, as there are lots of pulse points around your feet and ankles. Liberate your feet with appropriate sandals to help them breathe, or alternatively, dunking your feet in some cool water when you take off your shoes to cool off!
2) Chilling your sheets before bed
Despite being only a short-term solution, chilling your sheets in a sealed bag in the fridge for a couple of hours before you go to sleep can help you feel cooler, or try the freezer for faster results. Although your own body heat will warm up the sheets fairly quickly, it can help your body cool in that period, which in turn could help you drift off to sleep easier.
3) While you’re out of the house, close your curtains
When you leave your curtains open, it allows sunlight to come through and essentially heat the area like a greenhouse. When closed, the curtains will prevent this greenhouse effect beyond your window sill and keep your house much cooler. It can make a huge difference, especially if your house faces the sun.
4) Unplug electricals that aren’t in use
Plug sockets that are filled with electronics that you aren’t using will generate more heat. If the plugs become too hot, especially in a heatwave, it increases the chance of a fire hazard as well. So it may be a good idea to lose the unnecessary electricals at this time of year!
5) Invest in Kool-Ties or Cooling Vests
Kool-Ties are simply something you tie around your neck, can work for up to three days, and cool the whole body through cooling your neck. Cooling Vests have special cooling crystals incorporated into the material which are soaked in cold water, then can hold the temperature for a substantial period of time. You can even get versions for dogs!
Other ways to help keep cool in this hot weather can be taking regular cold drinks and wrapping a cold damp towel around your neck.
MS-UK is a small national charity dedicated to supporting people affected by multiple sclerosis (MS) to live happier and healthier lives. We have always been proud to be an independent charity that is mainly funded by the support of the MS community. It is through fundraising events and donations that we have been able to run our services all these years. It is the generosity of those that truly understand what life with MS is like, that keeps our essential work going.
However, with all events now cancelled, so much of our income has dried up over-night. And this at a time that those people who were already feeling lonely or isolated, or struggling with their mental health, need us now even more.
Could you do something fun to raise money for MS-UK whilst you are at home? Our fundraising team have been working hard to create some fun ways you can help raise funds for MS-UK and stave off the boredom of lockdown at the same time! From sponsored head shaves and quizzes to an Ice-olation Challenge, gaming marathons and fun with the kids, we’ve got it covered. Check out our Fundraising From Home webpage and choose an activity for you and your family.
Or are you able to make a donation to keep our services open?
Every penny raised, really will make a difference.
Thank you so much for your support, I wish you and your loved ones well.
Amy Woolf, CEO of MS-UK
I wanted to let you know that MS-UK staff are now working remotely to ensure that we can keep as many of our services available to support people living with multiple sclerosis (MS) as possible.
Due to a high volume of calls, responses from our helpline service may be delayed. However, if there is no one available to take your call please leave information about your query, email address and telephone number and a Helpline Information Officer will get back to you as soon as possible. Please note that it is likely that we will be able to respond to emails faster than telephone messages and that you may receive responses outside of office hours. To contact the MS-UK Helpline email email@example.com or call 0800 783 0518.
The MS-UK Counselling service will continue to run as normal and is unaffected. To register for MS-UK Counselling visit www.ms-uk.org/counselling.
If you attend Josephs Court, we will be ensuring you hear from us regularly and have created some exercise videos to support your activity at home. You can find them on our YouTube channel.
We appreciate your support and wish you all well during this challenging time.
Amy Woolf, CEO of MS-UK
The MS-UK Helpline team have been working really hard to answer all of your questions around how coronavirus will affect your multiple sclerosis (MS). Here are some of your frequently asked questions answered.
I’m taking a disease-modifying drug for my MS, does this leave my immune system compromised?
The answer to this question depends on which MS drug you are taking. Some will leave you with a weakened immune system and others won’t. The MS Society published some useful guidance on which drugs leave you most susceptible. Click here to read more. For more information about coronavirus and disease-modifying therapies in MS the Association of British Neurologists (ABN) has also released some guidance.
I have MS but do not take any immunosuppressant drugs, how will coronavirus affect me?
For the first time yesterday, the PM announced that people with MS should be practising social distancing. Social distancing encourages those that can to work from home, avoid large public gatherings and public transport, and avoid anyone displaying symptoms. Click here for more information.
Someone in my house is living with multiple sclerosis. What can I do to protect them?
You can also practise social distancing with them to reduce your chances of contracting the virus and bringing it home. Taking it one step further, the person living with MS in your house could self isolate in one room away from the rest of the household to further limit their chances of contracting the virus. Click here to see the guidance on social distancing and self-isolation.
For the latest information on coronavirus, visit www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response.
Diana Crowe, MS-UK's Head of Services, met locally with H Goodwin, Suzanne Howe and Amy Melton from United in Kind, an organisation which is aiming to put an end to loneliness in our communities. It was great to share with each other about the work we have been doing.
There are eleven United in Kind coaches in total whose roles are to connect communities through kindness to reduce loneliness and social isolation.
It was interesting to hear how the coaches are building relationships across Essex with hundreds of community, charity and voluntary groups to reconnect communities.
The organisation needs everyone in the community to come together, so if you know of any community activities that might be of interest to others in your area, please share by sending an email to firstname.lastname@example.org. Local coaches can also help set up activities in your area. To find out more about your local coach go to www.unitedinkind.org.
You can follow United in Kind’s activity on social media using the hashtag #UnitedinKind and by visiting www.facebook.com/unitedinkind, www.twitter.com/unitedinkind and www.instagram.com/unitedinkind.
I just wanted to let you know our opening hours for the festive period as we get closer to the mince pies!
Tuesday 24 December - Open 9am to 1pm
Wednesday 25 December to Wednesday 01 January - Closed
Thursday 02 January - Open from 9am
If you attend our wellness centre in Essex, Josephs Court, we will also be opening for a couple of days so you can continue your exercises throughout the festive period. Josephs Court will be open from 9am to 1pm on Friday 27 December and Monday 30 December.
During the holidays, you can always contact our helpline team and we will respond in the New Year when we return.
If you would like to speak to someone before then, the Samaritans are open 24/7 and you can contact them in a variety of ways. You can visit the Samaritans website or call them on 116 123.
Wishing you a merry time if you are celebrating Christmas and a very happy New Year from all the teams here at MS-UK!
Head of Services
MS-UK is celebrating this week after achieving a Trusted Charity Mark award recognising the excellent work it does in the third sector across the UK.
We were awarded the highly respected status after being recognised for effective governance and management by the National Council of Voluntary Organisations (NCVO).
Trusted Charity is part of the National Council for Voluntary Organisations (NCVO) and is the only UK quality standard designed to help third sector organisations operate more effectively and efficiently. We were assessed against the 11 standards of effective practice in Trusted Charity, including in governance, leadership and management, managing staff and volunteers and managing money, and proved to meet all standards.
‘We are delighted to receive recognition for the hard work we put into running MS-UK. Good governance and management is essential to maintain the high standards we have set at our charity and we owe it to people affected by multiple sclerosis (MS) and our supporters to ensure these are maintained so we are here for many more years to come,’ says MS-UK CEO, Amy Woolf.
MS-UK is a national charity that supports many of the 130,000 people affected by multiple sclerosis (MS) in the UK, that's one in every 500. We are here for anyone affected by MS, to empower them to live healthier and happier lives. We aim to improve the understanding of the condition and providing support where it is needed most. We offer a number of supportive services, such as MS-UK Counselling, the MS-UK Helpline, its magazine New Pathways and its Essex-based wellness centre, Josephs Court.
Nadeem Razvi, Trusted Charity Programme Manager, NCVO said, “We are delighted for the trustees, staff and volunteers of MS-UK that they have achieved the Trusted Charity Mark. We know that organisations using the Trusted Charity standard have better governance, better systems and procedures and better quality of services for their users and it is great that the community of Trusted Charity users in England/Wales/Scotland/Ireland is growing”.
Today is World Mental Health Day and our MS-UK Counselling team are looking at common mental health myths head on…
Myths and beliefs about mental health issues can be instilled in us from an early age. These myths and beliefs are not designed to harm – they are passed to us in good faith mainly from parental figures, care givers and the environment in which we develop. These myths are designed to protect us from emotional issues rather than support us. The result is that we learn how to suppress our emotions rather than express them. Here are some common myths we often come across as counsellors with MS-UK…
Myth 1 - Mental health problems are rare
Mental health problems are widespread. According to Time to Change, around one in four people will experience a mental health problem each year and they can affect people from every walk of life.
Myth 2 - I can’t do anything to support someone with a mental health problem
The simple response here is, yes you can!
Ask how somebody is doing. It’s highly unlikely that you will make things worse. In fact, it may be that your relative, friend or colleague needs to talk to somebody and you ask them how they are doing helps them to open up about how they are feeling
People want to feel heard. You offering a listening ear can often help more than you realise. Try not to judge what the person is saying, even though what you are hearing may be shocking. They are being brave talking to you
Sometimes the person may feel worried or feel embarrassed about what they may have shared with you and wonder how you are going to act around them going forward. Try and treat them in the same way as you did before they opened up to you
It is OK to ask if somebody wants to talk more than once. It may be that the first time you asked them they didn’t feel able or ready to talk but they feel able to talk now
Myth 3 - People experiencing mental health problems aren’t able to work
People living with mental health problems can hold down a successful job. If one in four people experience a mental health problem each year these statistics suggest that in fact we probably all work with someone who is experiencing a mental health problem.
Myth 4 - People with mental health problems can’t recover
People can and do recover from mental health conditions and recovery means being able to live, work, learn and participate in the community. There is lots of different support and help available to help people recover.
Mental health problems may not go away forever but lots of people with mental health problems still work, have families and friends, engage in hobbies and interests and lead full lives.
These websites offer support:
Myth 5 - People living with mental health conditions are usually violent and unpredictable
Most people living with mental health conditions are not violent. In fact, somebody with mental illness is actually more likely to be a victim of violence than to inflict it. According to Time to Change, the movement working to end mental health discrimination, the majority of violent crimes are committed by people who do not have mental health problems. It also states people with mental health problems pose more of a danger to themselves than to others, with 90% of people dying through suicide having experienced mental distress.
Myth 6 - Young people just go through ups and down as part of puberty – it doesn’t mean anything
One in eight young people experience a mental health problem, according to the NHS’s Mental Health of Children and Young People 2017 report. This statistic is widely thought to just be the tip of the iceberg. You may find it helpful to look at the charity, Young Minds. Visit www.youngminds.org.uk/.
Myth 7 - People with mental health problems are lazy and should try harder to snap out of it
This is not true. There are many reasons why someone may have a mental health problem and being lazy or weak is not one of them. People cannot just snap out of a mental health problem and many people may need help to get better. This help may include counselling, medication, self help and support from friends and family.
Mental health and multiple sclerosis
Depressive disorders occur at high rates among patients with MS and this can have a major, negative impact on quality of life for people living with multiple sclerosis, according to a study. However, counselling can be helpful in finding ways to talk about thoughts and feelings associated with MS.
As part of our series of blogs today for World Mental Health day, Adam tells us about his first counselling session with MS-UK and how he felt supported to open up to someone who was completely removed from his experiences of living with multiple sclerosis…
‘I was first diagnosed with multiple sclerosis (MS) in March 2018 after one episode of symptoms. After I was told the news I was initially in a state of shock and just remember my wife bursting onto tears. I didn’t want to see or speak to anybody and I just couldn’t believe what was happening.
‘I have four children and all I could think of was them. I had a million questions in my head. How would I look after them? Would they end up looking after me?
‘The biggest feelings were ones of guilt and helplessness. I felt like the diagnosis meant my life was pretty much over and I would be a burden to those I am closest to. The feelings of helplessness were due to the lack of information and the unpredictability of the disease. Everything is a ‘maybe’ as each person is different so it’s a difficult diagnosis to understand and explain to others.
‘I found the information booklets produced by MS-UK and the MS Trust a great way of not only explaining the condition to friends and family but also for me to understand the condition and that the things I was feeling were normal.
‘I saw a tweet from MS-UK which mentioned the counselling service and I thought to myself that it couldn’t hurt to try. The idea of counselling did have an appeal.
‘I feel lucky as I have a great support network but it’s hard sometimes when you do want to talk about MS but don’t want the guilt of burdening someone close to you. I did have reservations, mainly because it was a new experience and that unnatural feeling that comes from sharing things with a stranger. Fear of being judged came into it as well, although I quickly realised this was not something to worry about.
‘The first session left me feeling so positive. It was just so nice to have someone really listening. Someone who is independent, who doesn’t know me but just wants to support and help.
‘When we went through the initial checklist of things I may be struggling with, I did have a realisation that some of them were affecting me more than I thought. You do wonder how talking through things will actually help and this is perhaps the biggest reservation, but after just one session I absolutely understood how I could benefit from the service.
‘Counselling has helped me really think about my needs and gave me the opportunity to be reflective in my thoughts about how I interact with people, what I enjoy doing and how to feel positive about the future.
‘This service also helped me feel empowered to talk through some of the anxieties I was feeling living with MS. It really did feel like a journey and I do think about decisions and choices in a different and more positive manner.
‘I have definitely got better at recognising the things I’m proud of now, no matter how small. Using the MS-UK counselling service has made me realise that sometimes the simplest achievements can be proud moments to celebrate.’
About MS-UK Counselling
MS-UK Counselling is confidential and open to anyone living with multiple sclerosis. MS-UK counsellors are registered or accredited with the British Association for Counselling and Psychotherapy (BACP) with knowledge of MS and its impact on mental wellbeing. MS-UK is a BACP organisational member and our number is 275169.
Register online today or call us on 01206 226500 to find out more.