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 107,000 people affected by multiple sclerosis (MS) in the UK. 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.
On Sunday I had the privilege of cheering on our amazing #TeamPurple runners at the Simplyhealth Great North Run!
The weather was warm (if a little windy!) as I joined crowds of well over 200,000 people lining the route of the run, right from Newcastle to South Shields. Over the whole weekend around 58,000 people took part in events, from the 5k run through to the Great Tees 10k, but I was there to support the amazing runners taking on the Great North Run in aid of MS-UK.
This was the first year I have travelled North to support #TeamPurple at the Great North Run and I was amazed at the dedication and energy of our runners. It was a brilliant atmosphere and I would like to say a big thank you to everyone who wore our purple running vests with pride.
Every penny raised from this event helps us support even more people across the whole of the UK who may be living with multiple sclerosis (MS). One service we offer is being able to listen to people’s worries and concerns through the MS-UK Helpline and offer lots of information and support at times when it is really needed. Our amazing fundraisers make this possible.
The date for next year is already out – 13 September 2020 – so if you want to join #TeamPurple please get in touch with me to register your interest. I would love to be cheering you across the finish line at this unforgettable event next year!
Events Fundraiser, MS-UK
Inflammation is essential to our survival. It’s our first line of defence against the outside world. It attracts cells of the immune system to the site of danger to destroy pathogens and helps heal injury. As a short-lived response it performs excellently as protector and healer.
In multiple sclerosis (MS) inflammation is ongoing (chronic), with the myelin covering being attached by neurons wrongly identified as pathogens. The immune system attacks pathogens with oxidation. The oxidative damage causes further inflammation.
An unhealthy gut microbiome can be a source of inflammation. Boston researchers found MSer’s microbiome linked to ongoing inflammation. Luckily the microbiome is easily changed with food choices that nourish the microbiome.
Foods described below can have anti-inflammatory effects, either directly helping to resolve inflammation/oxidative stress, or indirectly by feeding our microbiome so anti-inflammatory microbes crowd out pro-inflammatory ones.
Champion foods (both direct and indirect effect)
Particularly rich dark, leafy greens contain polyphenols and antioxidants, which can directly reduce inflammation. Vegetable’s high fibre content feeds the microbiome. A small Italian trial found a high vegetable diet reduced inflammation, improved gut microbiome and helping to improve overall health.
Especially deeply coloured berries, which are potent antioxidants that can reduce inflammation. They also provide food for the microbiome, helping to keep your gut healthy. Try and make sure you are getting your 5-a-day, and aim for 10 if you can, after the NHS recently reported that 10 portions of fruit and vegetables is even better for us.
3. Oily fish
Mackerel, salmon and sardines are all sources of essential fatty acids (EFAs) omega-3s, which UK researcher found increased anti-inflammatory bacteria in the microbiome and may help directly resolve inflammation.
These are a source of required omega-6 EFA, which can be inflammatory in excess. Walnuts have a balance of omega-6 and omega-3, and research has shown they promote anti-inflammatory microbes. Research found that walnut oil reduced inflammation in a mouse model of MS.
Another great source of EFAs. Some seeds, such as flax and chia seeds have a high anti-inflammatory omega-3 content.
6. Extra-virgin olive oil
Extra-virgin olive oil is a source of antioxidant vitamin E and anti-inflammatory polyphenols. A review of multiple trials indicated that this oil could improve inflammatory disease symptoms.
Ginger has well known anti-inflammatory properties. An Iranian researcher indicated it may reduce inflammation in mice with experimental autoimmune encephalomyelitis (EAE).
It’s been in the news a lot recently and is now well known for its anti-inflammatory properties, but it has poor absorption. Consume it with healthy fats and black pepper to improve the absorption.
Indirect effect via the microbiota
9. Legumes and wholegrains
Another good source of fibre which has been found to benefit gut microbiota.
Out of the above list seven constitute the Mediterranean diet. Interestingly, the Mediterranean diet is very similar to the high vegetable diet used in the Italian study mentioned in point one. It showed an anti-inflammatory effect in MSers and reduced disability. The anti-inflammatory Mediterranean diet is being looked at by a variety of experts and particularly for people with MS.
Sharon was diagnosed with multiple sclerosis in 2007 and prompted a career change to nutrition with the goal of empowering people to take positive steps toward feeling better. Sharon aims to share her nutritional knowledge, the latest nutritional and lifestyle research and expertise from healthcare professionals. Visit Sharon’s website for more information about her and her latest articles.
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Mindfulness is a bit of a buzzword and that is for good reason. With practice, mindfulness can change the way our brains work and instill a sense of calm. Far from its roots in traditional Buddhist practice, mindfulness of today is about taking your focus out from the past which we can’t change and the future which is yet to happen and putting it firmly in the present. This can be done in a number of ways from focusing on the body to the external senses.
Forgive others and ourselves
Holding on to grudges and past hurts has been likened to ‘putting your hand into a fire but expecting it to burn the other person’. It might feel like the right thing to do, but what does it really accomplish? Forgiveness is surprisingly seldom about the other person but about the feelings and beliefs that we carry with us from the precipitating event. Forgiveness is a private decision and it is not necessary to tell the other person that we have forgiven them. Of course, forgiveness of the self is just as important, as feelings of shame can be overwhelming, we are human after all and everyone makes mistakes.
Use positive affirmations
It’s easy to fall into a rut of negative talk, but by changing the wording it can have a transformative effect on how we feel about ourselves. Remember that coach from school or any other supportive and encouraging role model you have had the joy of spending time with? Be your own cheerleader – ‘you can do it, you are worthy and you are loveable’.
Set small goals and complete them
By setting ourselves small achievable goals throughout the week we can begin to see that we can do the things we set our minds to. Whether it is finishing that book, learning to crochet, phoning an old friend or putting time aside for self-care, it shows ourselves and others that we care for and value ourselves.
Keep a gratefulness journal
Log three things you are grateful for every other day, they don’t have to be big things. A smile from the lady in the newsagents, a bird on the windowsill or simply an hour of your favourite TV show. By feeling and acknowledging the small moments in our life that we often take for granted, we can start to build a more accurate model of what our life is really like rather than focusing on the negative parts.
Last week, MS-UK Counsellor Louise Willis looked at what self-esteem is, this week she will look at how we can help to build a healthy level of self-esteem
Stop negative self-talk
We have all done this, whether it’s how we speak to ourselves when we make a mistake or our general internal narrative. When we talk to ourselves in a negative way we have no filter to say ‘hey, that is not true’ or even to question it as we may to a friend if they were to say it. Would you expect someone who is being spoken to negatively to have high self-esteem?
Step up the self-care
You are a valid and unique person like everyone else. Treat yourself with the respect you need and others will too. Spending time doing your favourite hobby, getting a massage, reading a good book, enjoying time outside or a long relaxing bath are all ways to show ourselves that we care.
Being assertive is not about taking control or being aggressive or forceful, but about kindly and calmly stating your needs or wants with respect to both yourself and others. Assertive communication uses ‘I’ statements as a way of owning thoughts and feelings and always calmly listening to and acknowledging the other person. Practicing saying ‘No’, planning conversations in advance and offering alternatives is also helpful in assertive communication.
Develop healthy boundaries
Having stable and reliable boundaries affords us and others the security to know where we stand in relationships. For those with low self-esteem, boundaries can often be weak and the more we allow others to cross them, the more out of control we can feel. Developing boundaries is not only healthy for us but is essential for healthy relationships.
Challenge negative beliefs
We can often adopt negative ‘core’ beliefs about ourselves. These can rear their ugly heads in times of hardship and illness. When challenged, these beliefs are rarely true but because they have been there since early life, we often don’t even realise we have them. When we view our life through the lens of a negative belief, we will see mostly negative outcomes. Happily, these beliefs can be challenged and changed for new, more helpful ones which in turn will begin to build self-esteem.
Check back on the MS-UK blog next Thursday to read the final instalment of this three-part blog series. Click here to read the first instalment if you missed it.
This week the UK is set to see soaring temperatures, with most places reaching temperatures between 34-35 degrees according to The Met Office. They have also reported that the South East of England could see it rise to an immense 37 degrees. Whilst some may bask in the fact that we’d normally have to pay to experience such hot weather outside of the UK, 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, which is why we are going to give you some top tips on how to keep cool in this weather…
1 ) Wear weather appropriate clothes
Whilst wearing shorts or loose clothing are apparent ways of keeping cool, changing your choice of footwear is a good way to go 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. Switching to some appropriate sandals can help your feet 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 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. Although your own body heat will heat 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.
4) Unplug electrical plugs 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.
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.
On Friday morning I set off to the University of Warwick to attend the annual MS National Therapy Centre Conference.
MS National Therapy Centres (MSNTC) is a charity which represents individual therapy centres across England, Scotland, Wales, Ireland, the Channel Islands and Gibraltar. These centres provide treatments, therapies, help and support to some 15,000 peop
le living with multiple sclerosis (MS) every week.
The annual conference and AGM is a chance for therapy centres to come together, share best practice and learn from each other. The conference, which was hosted by Frank Sudlow, Chair of the charity, ran over two days and included workshops, speakers and lots of updates about the world of MS.
I was particularly keen to hear Dr Dawn Langdon speak about cognition and MS and I wasn’t disappointed. Dr Langdon is Professor of Neuropsychology at Royal Holloway University of London. Her talk included an update on what research is being carried out to discover the impact of cognition difficulties for people living with MS as well as some useful insights about how people can improve their cognition by stretching their brains. It gave me a lot of food for thought!
The conference was also a chance for me to meet up with other CEOs from the national charities… David from the MS Trust and Nick from the MS Society. It was great to be able to talk to them about their work and how they are supporting people affected by MS as well as updating them on what MS-UK is doing. I hope that we can work together in the future to reach even more people and let them know we are all here to help in any way we can.
I wanted to say a big thank you to the MS National Therapy Centres for inviting us – see you next year!
Amy Woolf, CEO
In 2013 my lovely mother got diagnosed with multiple sclerosis (MS). When we got the news of course we were devastated, not knowing much about the condition apart from the fact it was “incurable “ through medication and put her in a lot of pain, we just all did what we could to support her but for years I have felt helpless. She decided not to tell anyone but her close friends and family of the condition she was living with...why you ask?
My mum is one of the most strong, independent, driven and successful women you will ever come across. In 1999 she was awarded the Ernst & Young trophy winning Young Entrepreneur of the Year. From 1992 - 2012 she owned a very successful business expanding world wide in over twenty countries and for years she was on the panel of the DSA and was well respected in the industry she was in. Sadly, I believe because of all of this she put pressure on herself to portray this strong business women, I think she thought people would take pity on her or think she couldn’t get the job done if she came clean that she had MS. So instead she suffered in silence, for a few years she was CEO of a large network marketing business which was an extremely high pressured job and to get her through the pain day to day she would take morphine based pills which again is something none of her colleagues knew about.
In 2017 my mother found herself heading up Europe for one of the largest essential oils company in the world doTERRA, here again she would be working 70 hour weeks, another high pressured role but this time she would be taking over 100 flights a year around Europe. Anyone that has MS will know that one of the biggest struggles is tiredness, so it won’t come as a shock to you when I tell you that she was exhausted. But this time something was different, as she was now part of this essential oil business she discovered natural medicine and in time found the perfect essential oils to support her immune system and pain relief and now to this day is morphine free.
In June 2018, even though my mum was at her healthiest, her strongest, pain free and our “happy mum”, I still felt I needed to do something to help her and others with MS and also families that have lost loved ones through MS. I took the plunge and decided to apply to run the Virgin Money London Marathon 2019 to raise money for MS-UK. They help people and families through some of the darkest times. This journey has been incredible - I have not just been able to raise over £2,000 but I have also learnt so much about myself too, I feel so proud to be a part of it all and to have run for such a good cause with an amazing charity.
Last month my mum told me that I had given her the strength to tell the world what she had been hiding for years, she told her colleagues and thousands of people who work alongside her, friends she had not seen for years that she has had MS for over 6 years. People where stunned, some sad, some happy because her story had also helped them, but most of all no one took pity on her!
So my 'WHY' is my mum, I ran for her, for the strength she has shown, for never giving up, for still pursuing her career even though at times it was nearly impossible to get out of bed let alone run a business, for now helping so many other people with MS find a natural solution that works with them, for having the strength to tell everyone that she will fight and lastly for being the best mum I could wish for!
Applications are now open for MS-UK #TeamPurple places in the Virgin Money London Marathon 2020!