When I was diagnosed with multiple sclerosis (MS) at 23, I was so scared and lonely and in quite a dark place. It was a huge deal for me – I’d only been married for a year and was at the beginning of my career as a nurse. My parents took it very badly, and it was a big, big change for me.
Early on in my journey, I was prescribed antidepressants. They help keep me on an even keel.
Having MS, there are times when I feel very lonely. It doesn’t matter how many people I have around me, I can still feel very alone. Unless they have it too, your loved ones and friends don’t really understand what you’re going through.
Old friends worry about meeting up with me. They wonder how bad I will be – whether I’ll be able to walk or whether I’ll be in a wheelchair.
I do spend a lot of time at home alone, but my little dog helps me enormously. She’s like my shadow and my best friend. Having her, with her unconditional love, has helped me so much. Pets help so much when you’re lonely.
Knowing the MS-UK Helpline is there when I need to talk makes me feel supported.
This year MS-UK's Christmas appeal is raising money to support our helpline, which is here to support people living with MS when they need it most. Our research shows that 71% of people living with MS feel lonely or isolated because of their condition. By working together with MS-UK, you can help these people feel less alone this Christmas.
Diana Crowe, Head of Services at MS-UK, explains all for Safeguarding Adults Week 2020
We all have a right to a life that is free from abuse and safeguarding is everyone’s business. This week it is national safeguarding adults week and as Head of Services I thought I would take some time to talk about this as it is part of my role.
The world has changed significantly for all us since March 2020 and the first national lockdown due to Covid-19 and it has impacted on all of us in different ways. Many of our clients have been struggling with the loneliness and isolation caused by shielding and living with the worry of catching the virus. For others it may have impacted on finances, relationships and family life which can create tension and difficulties that increase risk of harm.
MS-UK has a national helpline and a national counselling service which are both delivered by telephone, video call or email. Therefore, it is my role to ensure that all of my staff know how to recognise the signs of abuse or neglect and understand what actions they need to take in order to prevent harm.
So on a day-to-day basis, if one of my members of staff had concerns about someone they had been working with they would let that individual know that were going to speak with me or another senior manager to see if any action needs to be taken in order to keep them or someone else safe. It is always best practice to give the individual a chance to express their wishes and what they would like to happen but in some circumstances we have to take action in order to prevent any immediate risk of harm.
Dealing with safeguarding matters can be challenging for all involved so we make sure that we support everyone throughout the process. Our safeguarding adult policy is on our website so anyone that accesses our services understand the responsibilities we have and to provide confidence and assurances to those we work with. We always have the best interests of the individual at the heart of what we do and will always keep them informed of our actions where possible. The clients’ local Adult Social Services guide all of our decisions and actions.
Our vision at MS-UK is a world where people affected by multiple sclerosis (MS) live happier and healthier lives. Our values include providing professional high quality services by knowledgeable staff, ensuring that the people we support are treated fairly, with respect, care and compassion. Adult safeguarding is at the heart of all we do to ensure that we can make a difference to those affected by MS.
There are approximately 196,000 charities in the UK and just over 1 million trustees. Trustees are the people in charge of a charity. They help to make the UK the sixth most giving country in the world.
They play a vital role, volunteering their time and working together to make important decisions about their charity’s work.
This week is Trustees’ Week (2-6 November), an annual event which showcases the great work trustees do and highlight opportunities for people from all walks of life to get involved and make a difference.
At MS-UK our dedicated Board of Trustees works closely with the MS-UK management team to develop and ensure the effective implementation of our Strategic Plan. All of our trustees come from different backgrounds and bring with them their career and life experience to help grow and progress the charity. You can find out more about our trustees here.
How do I become a trustee?
If you’ve ever thought about becoming a trustee there are many charities across the UK with vacancies, take a look www.trusteesweek.org/find/.
Thank you to everyone in the MS-UK community who got involved with our World Mental Health Day event on Saturday 10 October. We just wanted to bring all the resources together in one handy place, so anyone can access them in the future.
Here's a list of links for the resources. If you would like any support, please get in touch. MS-UK is here for anyone affected by multiple sclerosis (MS) and you can reach us on 0800 783 0518 or by contacting us via our online web form.
This year we commemorated World Mental Health Day by sharing the findings of our Loneliness and Isolation Report. You can find out more about this piece of research by reading the full report below or visiting the web page.
Across the UK, there are a range of mental health charities and organisations offering support and information. Here we have listed some well-known organisations which you may find useful.
For a longer list of organisations that specialise in certain areas, visit the NHS website.
The NHS urgent mental health helplines provide 24-hour advice and support for anyone living in England. You can find a helpline number using the NHS website.
If you feel you or someone else is at risk of serious harm or injury, please call 999.
The Mental Health Foundation aims to help people understand, protect and maintain their mental health. The offer community and peer programmes, undertake research, give advice to people affected by mental health conditions and campaign for change.
Mind provides advice and support to empower anyone experiencing a mental health problem. They also campaign to improve services, raise awareness and promote understanding. They run an Infoline, a Legal Line and produce publications about a wide range of mental health issues.
Across the UK, Mind have a network of independent local Minds that are run by local people, for local people. They provide support like advocacy, counselling, housing advice and more.
Rethink Mental Illness offer a network of 140 local groups and services and they offer expert information via their website. They also campaign to make sure everyone affected by severe mental illness has a good quality of life.
Samaritans offer a 24-hour helpline that anyone can contact if they are struggling with their mental health. You can call them any time, 365 days a year, on 116 123 for free. Samaritans also accept email enquiries, letters and have a self-help app on their website.
SANE provides emotional support, guidance and information to anyone affected by mental illness, including families, friends and carers.
You can read our Choices booklet about MS and mental health online today or order a printed copy.
Saturday 10 October 2020 is World Mental Health Day. Here at MS-UK we are reflecting on the findings of our Loneliness and Isolation Report, hoping to bring these important issues into the light.
We are also sharing mental health resources live throughout the day on our Facebook page (join us on Facebook between 10am - 3pm).
There are a number of health professionals who can help to support you if you are experiencing mental health issues.
This is often a good starting point if you are feeling anxious, having trouble sleeping or beginning to worry about your mental wellbeing. It can be difficult to start this conversation but your GP will be able to offer advice and refer you on to mental health services if they feel it is needed. Your GP may mention the IAPT programme, which stands for 'Improving Access to Psychological Therapies. You can find out more about IAPT on the NHS website.
MS nurses are familiar with multiple sclerosis (MS) in a way that means they can spot signs of low mood or depression, sometimes before you notice them yourself. Talk to your MS nurse if you have any worries and they will be able to signpost you or refer you on to other support.
Counsellors do not offer advice and will not tell you what to do but can help you to talk about your experiences to make it easier to find a way forward. MS is an unpredictable condition and learning to live with this uncertainty can be challenging. Counsellors can help you to explore how MS may be affecting your wellbeing and how you are adapting emotionally.
MS-UK Counselling is a telephone service that is available to anyone with a diagnosis of MS. You can register online for MS-UK Counselling or ask a health professional to refer you. If you would like to try face-to-face counselling, check if your local MS Therapy Centre or local MS Society group offers this. You can also search for a therapist through the BACP website.
You can read our Choices booklet about MS and mental health online today or order a printed copy.
Mobile phone or tablet apps can be really useful for supporting your mental wellbeing, so this World Mental Health Day we take a look at what is available in the app store at the moment.
At MS-UK, we believe in offering people affected by multiple sclerosis (MS) as much information as possible, so you can make your own informed choices. That's why we have listed as many apps as possible, but which ones you try out are up to you. Where we can, we have also included links to the app websites.
You can download any of these apps via Google Play or the apple store straight to your smartphone or tablet.
This app helps people manage their emotions and get a restful nights sleep. It gives options to subscribe for personalised mindfulness meditations as well. The idea behind the app is to find strength and rest through using Aura when you feel stressed or anxious. Visit the Aura website.
This app is all about managing your breathing to reduce stress. It features instructions and practice exercises to help users learn the stress management skill called 'diaphragmatic breathing'.
This is a free app that helps you manage feelings of anxiety and depression by turning negative thoughts into positive ones.
Another free app, Chill Panda measures your heart rate and suggests tasks to suit your state of mind. Visit the Chill Panda website.
This app is all about developing a mindful approach. It includes guided exercises, videos and meditation. Find out more on the Headspace website.
This is a free meditation app, with paid features you can subscribe to as well. Visit the InsightTimer website.
This app has simple learning modules to help you manage fear, anxiety and stress and tackle unhelpful thinking. It is free, but has some in-app purchases as well. Visit the My Possible Self website.
This is Mind's online community, which used to be called Elefriends. It is a forum where you can listen, share and be heard thorugh posting, commenting and private messaging. Visit the Side by Side website
This is an app that offers a free eight-week course to help you manage anxiety and stress, designed to be completed in your own time and at your own pace. You can find out more about the course on the SilverCloud website.
This app lets you track your mood for free and access targeted mindfulness practices. The app suggests you spend 10 minutes a day to help bring more balance into your life. Visit the Smiling Mind website.
This is a free online community, offering digital mental health support for anyone aged 16 and over. You can find out more about the forum on the Togetherall website.
This free app aims to help you take control of your worries, one at a time. It helps you record, manage and solve your worries based on Cognitive Behavioural Therapy (CBT) techniques. Find out more on the WorryTree website.
On Saturday 10 October, MS-UK is posting live on our Facebook page to commemorate World Mental Health Day. This year, the theme for the day is 'mental health for all' and we are sharing the findings of our Loneliness and Isolation Report to highlight how important mental health support is for people affected by multiple sclerosis.
To commemorate World Mental Health Day, all week we are sharing information and resources about mental health therapies and support available.
So, what is Cognitive behavioural therapy, or 'CBT' as it is often called?
CBT is a talking therapy that helps people manage their immediate problems by changing the way they think and behave. This may sound very difficult, yet CBT aims to break problems down into small, bitesize chunks so you can deal with them better. The therapy is rooted in the idea that our emotional and physical feelings are linked, so negative thoughts can feel very overwhelming and have a big impact on your day-to-day life.
CBT helps you to change negative patterns. Unlike some more traditional talking therapies, CBT looks at the here and now, rather than focusing on your past.
Key aspects of CBT:
Cognitive behavioural therapy is highly structured and can be quite short term (a course of treatment may last between 5 and 20 sessions), but it is important to remember that it is not suitable for everyone. It may not suit you if you need to look more at your past experiences like your childhood.
If you are interested in trying CBT, you can speak to your GP who will be able to guide you about the different therapies available and make a referral on your behalf. You can also refer yourself directly via the NHS Improving Access to Psychological Therapies service (IAPT).
We are here to support you. You can contact the MS-UK Helpline either by calling us for free on 0800 783 0518 or by contacting us digitally. You can also register for MS-UK Counselling, which offers talking therapy for anyone with a diagnosis of multiple sclerosis (MS).
On Saturday 10 October 2020, MS-UK will be sharing our Loneliness and Isolation report to encourage mental health for all, including people affected by MS.
MS-UK Counsellor Jas Sembhi explains why people with multiple sclerosis can have low mood and anxiety
There are many reasons people affected by multiple sclerosis (MS) may experience anxiety or low mood. There may be feelings of low mood when you are first diagnosed, feelings of anxiety should a relapse occur, feelings of anxiety at what the future may hold – in particular the uncertainty of not knowing what the future might be. There is also the anxiety of not being able to do everyday things that you could previously do.
Due to the present situation, some clients have spoken about feelings of anxiety due to COVID-19 and how this may impact them due to low immunity. Having to self-isolate and not being able to do the things which previously made them feel good is also leading to low mood.
One technique I practise to help with anxiety is ‘grounding’. This technique helps us to bring our attention to the present moment by focusing on our senses and naming to ourselves
• Five things we can see
• Four things we can feel
• Three things we can hear
• Two things we can smell
• One thing we can taste
Grounding can help take focus away from the anxiety felt about an uncertain future.
Sometimes, for people affected by MS, you may be experiencing low mood due to how you are feeling at the present moment and the symptoms you may be experiencing. Doing things that make you feel happy and that are good for you can help. It might be useful to begin by making a list of what makes you happy. These could be really simple things like listening to music that lifts your mood, looking at old photos that make you smile, wearing an outfit that makes you feel good, and talking to people who are positive.
In this present situation, although you may not be able to physically go out and meet people, you could make a note of people to call over the telephone or video call – sometimes just the thought that you will be speaking to someone who makes you feel good can start to help lift your mood.
It may be that you find it difficult to do some of the things that previously made you happy due to MS symptoms. It might help to try new things and see what works for you – for example, joining a peer support group. This can be helpful as it gives the opportunity to talk with people who have shared similar experiences – sometimes it can seem lonely feeling that others may not understand what you’re going through. Talking to someone who does understand may help you feel you are not alone.
Everyone will experience happiness differently – so it’s important to find what works for you.
“Happiness is the meaning and the purpose of life, the whole aim and end of human existence.”
"There are only two days in the year that nothing can be done. One is called Yesterday and the other is called tomorrow. Today is the right day to love, believe, do and mostly live. "
If you found this blog helpful, please consider pledging support to our crowdfunder campaign
MS-UK is using MS Awareness Week to tell people the impact multiple sclerosis (MS) can have on mental health by sharing videos and blogs from its counselling service.
We offer the only dedicated telephone counselling service for people with MS in the UK and are currently crowdfunding to pilot a scheme of video counselling, which the MS community has told us would be even more beneficial.
During MS Awareness Week, which runs from 20-26 April, MS-UK will be posting vlogs from our trained counsellors on our YouTube channel and social media. They will cover topics such as how to deal with negative thoughts, low mood and anxiety, and managing uncertainty when living with a condition like MS.
We are encouraging everyone to get involved by sharing the content on social media and using the hashtags #MSAW2020 and #MindOverMS
On person who benefitted from MS-UK’s counselling service is Vicki who, eight months after her diagnosis, was struggling to cope. “I had so much pent-up anger and didn’t know what the future held,” she explains. “Counselling from MS-UK really helped me to communicate how I was feeling. It was very beneficial, but I think doing it via video would be even better, because you can see the other person’s body language and have a better connection with them.”
“Last year, 93 per cent of the people our counsellors worked with improved or maintained their mental and emotional health,” says Amy Woolf, CEO of MS-UK.
“NHS waiting lists for counselling can be up to 18 months, whereas we aim to keep this below 12 weeks. There are 90,000 people with MS in real financial hardship so it’s vital we raise funds to keep our services free or donation-based.”
We need your help!
We need your help! You can contribute to the crowdfunding campaign here and watch more of Vicky’s story – even if you can’t contribute financially, please share it on social media to help us get this vital service up and running to help people with MS live happier, healthier lives.