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”.
On 04 November our Head of Services Diana Crowe, and Laura Amiss-Smith from our MS-UK Helpline attended the 23rd MS Trust annual conference. This year the focus was on the needs of people with multiple sclerosis (MS) from point of diagnosis to end of life, whilst highlighting the importance of delivering holistic care to everyone with MS.
We had an exhibition stand for a day and we were able to talk to a variety of health professionals, including MS specialist nurses, occupational therapists (OTs) and physiotherapists about the work of MS-UK. We promoted our counselling service and Choices booklets, both of which generated a lot of interest, which was great!
We were both able to attend a couple of the seminars. Diana attended one on ‘MS and work – staying in work and leaving work well’ which was led by two clinical specialist occupational therapists from London. They shared some interesting facts about how 60 to 80 per cent of people with MS lose their job within 15 years because they struggle with fatigue, reduced mobility and cognition. They talked about the barriers to work which included attitudes of employers, demands of the role and activity limitations. The OTs spoke about the importance of early intervention, support to manage work performance and liaison with employers around reasonable adjustments which are just some of the things that can help people with MS to remain in work. The MS-UK blog recently published an article on this same topic.
Laura attended a seminar on ‘The pregnancy year – implementing a MS pregnancy service’ which was delivered by a consultant neurologist, MS specialist nurse, specialist midwife and Sally Darby, founder of Mums Like Us. Discussion was around how to support a woman from the moment they mention their wish to conceive, right the way through to after the baby is born. They also talked about the support for men when discussing drug therapies and their potential impact on reproduction. A personal story was shared by Sally Darby and was very inspiring. She spoke of the importance of community after she found pregnancy and becoming a new mum isolating, with not much support for the disabled mother. She founded an online network called Mums Like Us in 2017 after the birth of her second child.
It was a great to be in the company of so many who work within the MS community.
This guest blog is from Poppy Storey, aged seven, from Kent, who did the Tough Mudder with her brother Heath. Poppy’s mother, Helaina, is running the Virgin Money London Marathon 2020 for MS-UK too. The Storeys really are a force to be reckoned with!
My name is Poppy. My brother Heath and I raised £420 towards Mummy’s goal by doing a Tough Mudder. We had to run and go over lots of obstacles and we got really, really muddy!
I wanted to raise money for MS-UK so my Nanny can get better. My Nanny is really kind. I want everyone with multiple sclerosis (MS) to be happy and get well soon.
My favourite obstacle was the tunnel because going through it was really fun and it was like I ended up at a different place at the other end. It was really mysterious!
I didn’t really like the monkey bars as much because they were really hard to go on and Heath had to lift me and my hands were so muddy they kept slipping off, so it didn’t work. My little sister Imogen ran round everywhere with us but not in the track, obviously. She ran next to us at every obstacle and she was very excited.
A really funny part was when I couldn’t feel my legs because all the mud went into my trousers because when we went on Mud Mountain, every time I went down the hill I fell down into the water and started to float and it felt really weird.
One of the obstacles, Everest, was funny because I kept slipping down it and I got some mud in my eye when Heath tried to pull me up. He poked me in the eye with his muddy hand and Mummy poured water into my eye and scooped it out with her finger! Mummy said I was so brave and we got a treat at the end which was a sherbet ice cream and it was really sour.
At the end we got hosed off at the water station and my trousers were so heavy I couldn’t walk to the car!
Mummy told her friends to sponsor us and our school put it in the newsletter so our friends could sponsor us too. Daddy said we did such a good job and he donated another fifty pounds!
It was really fun and I was actually very surprised how much money we raised. We loved our MS-UK vests and even Mummy has one with her name on for the marathon. Go Team Purple!
The MS-UK Helpline regularly receives calls from the multiple sclerosis (MS) community with questions about working with MS. Here’s some useful information and resources which could help answer some commonly asked questions.
Here are some of the frequently asked questions we receive
We will do our best to try to cover these issues in this blog.
When it comes to work and employment issues MS is a protected characteristic under the Equality Act (2010). This means that employers must make reasonable adjustments for disabled workers which will enable them to stay in their job. It is important to note however that employers are not required to change the basic nature of the role. The Equality Act includes people with MS from the point of diagnosis even though they may not see themselves as disabled.
Reasonable adjustments could include:
To gain this kind of support and get a reasonable adjustment to your working practices you would need to communicate with your employer about your MS and explain how it is affecting your ability to fulfil your role. This will help your employer to understand what it means for you as an individual. It is suggested that even if you have a good relationship with your employer that you put this in writing to them.
It may well be that you could get the help of an occupational therapist who can look into barriers at work and make suggestions as to how to get past them. For example, this may involve rearranging a workspace, getting some assistive equipment or specialist software. In some areas, they may be able to visit your workplace. Your MS nurse will be able to refer to an occupational therapist through the NHS.
Occupational health services are offered by some employers. The occupational health professional will discuss and assess any adjustments needed to the workplace or working arrangements. They will also make recommendations after their assessment. If you feel that this would be useful for you, it would be worth having a conversation with Human Resources (HR) staff for the organisation you work for. HR and occupational health can help you and your employer to work together to understand the impact of MS and any adjustments needed. HR professionals will also help your employer to understand their legal responsibilities towards you as an employee with a disability.
Reasonable adjustments must be bespoke and tailored to each individual, and it must be said that for some roles unfortunately there are very little adjustments that can be made. If this is the case and working becomes too much of a challenge, it is a good idea that you seek specialist employment or legal advice.
The MS-UK Helpline is here for you if you need someone to talk to about work and MS, or anything else. Our team is available 9am - 5pm Monday - Friday through our freephone line on 0800 783 0518, email on email@example.com or through webchat.
Part two of this blog coming soon – Organisations that support working with MS.
Blogger Martin Baum was invited to an event at the House of Commons recently to launch a campaign. Here is his story of his experience...
In an age where blogging is a symbol of 21st century communication, the aim is as much for a blog to be read as it is to be written. As a multiple sclerosis (MS) blogger for various MS-related organisations I am no exception as I continue to try to engage with a loyal and growing readership.
As a writer I enjoy what I do very much but just like having MS it’s a lonely existence. However, sometimes, the unexpected does happen. I recently received an invitation from a charity called Overcoming MS (OMS) to attend a reception they were hosting at the House of Commons.
It was to launch a new campaign video giving everyone living with MS hope of recovery and it was not something I was going to pass up. The reception was sponsored by Stephen Lloyd MP and held in the Strangers Dining Room.
The person behind the promise of living a life free from MS was Professor George Jelinek, an Australian who devised the OMS seven-step recovery program which has enabled him to remain symptom free for 20 years. In truth, however, I was sceptical. Ever since beta interferons failed to sustain the promise of being the cure, I have become naturally wary of anything being promoted as such.
On reading more about Professor Jelinek’s regime prior to my trip to Westminster, it occurred to me my own lifestyle was already accommodating much of what he was advocating. The seven-step program is about following a strict curriculum of diet, sun, vitamin D, exercise, meditation, mindfulness, approved modifying medication, helping to prevent family members from getting MS, and changing a lifestyle for a healthier one.
Whilst I am not vegan I eat very little meat, preferring fish instead. I meditate regularly for ten minutes a day, I exercise as much as I am able to and enjoy the benefits of mindfulness. Most of all, I’ve been changing my lifestyle for a healthier one for several years which means, should I ever want to fully engage with the program, I’m only a couple of steps shy.
That afternoon I met many MSers sharing a happy disposition to be living with the condition because their symptoms were no longer an issue. Many claimed their lesions had been repelled and that they were now leading happier MS-free lives as a result of following OMS.
Throughout the afternoon I mingled with many inspirational people. Just like any of us, neither MPs nor nobility are immune from being touched by MS because they have family and friends affected by it. Stephen Lloyd’s reason for being there was because he had a constituent who had MS who also follows the OMS approach. That was reason enough for him to sponsor the event.
As the afternoon ended and I parted from some truly inspiring people, I was left feeling that the OMS seven-step recovery program had already succeeded in helping many people. But then my thoughts turned to those who weren’t but might have benefited if they had.
Having MS is a game of patience. We bide our time in what often feels like an isolated existence, waiting for a more traditional breakthrough in the quest to find a cure for the condition. I’m left feeling that more MSers should at least try something like the OMS approach that’s as near to organic as it gets.
I was first diagnosed with multiple sclerosis (MS) in 2010 and was pretty much directed to use the services of the MS Society by the NHS Neurology department. Their help was very much appreciated at the time as MS was all new for me.
Now, although I still have a lot of respect for the work and the people of the MS Society, I find that I want a more active life than their local members seemed to have. I wanted ‘To live life to the full’, which is pretty much MS-UK’s slogan - as I was about to find out.
I discovered MS-UK by chance while searching the web for more information on MS and as luck would have it, their head office just happened to be down the road at the Hythe in Colchester - another big plus in their favour from my point of view as transport could become a problem in the future.
The MS-UK premises boasts a fully-equipped wellness centre for people with MS and other neurological conditions, and I began using the specialist facilities (mainly exercise bikes) under the guidance of their wellness coach, Allan Pearson. The exercise helps prevent muscle problems that would otherwise occur with lack of use, as well as helping my brain to keep active.
Another benefit of attending the MS-UK gym is that it also promotes friendship with fellow MSers, although each person’s symptoms are unique to them.
The camaraderie with other MSers is further enhanced with regular events, coffee mornings, 10-pin bowling and other get-togethers, as well as with special opportunities, such as marathons, sponsored skydiving and aeroplane wing-walking!
There always seems to be something happening somewhere with an MS-UK logo on it as a way to raise money for the charity.
Additionally, MS-UK has a helpline staffed by fully qualified people, with direct experience of MS, offering strictly confidential on any subject over the phone.
MS-UK also hosts information sessions on different topics and invites companies and charities offering specific help on that topic, recently Age Concern and Mobility came in to offer information.
Fundraising for MS-UK’
With all this wealth of MS-related help practically on my doorstep, what’s not going to make me want to raise a few pounds to help MS-UK, which also gives me some purpose in life and is very important to me.
Up until my diagnosis with MS, I was an active bass guitarist in a few bands playing anything from Jazz to Blues to Pop. None of these bands you’ll have heard of but it was a passion of mine for over 25 years. This is what started the making of Virtuosity in aid of MS-UK.
Although I can no longer play the guitar myself, the one thing that MS will never take away from me is my passion for quality music. Promoting live music events wouldn’t be too time-constrained either, so I could take my time to set up live performances and make use of my experience and contacts in the industry.
Could this be the fundraising opportunity that I was looking for? I had to try it to find out.
In 2017, I decided to set about organising my first live music event and called it ‘Virtuosity in aid of MS-UK’ as it featured three of the best musicians that I’d ever played with: Chris Allard, Ramon Goose and Daryl Kellie. It took place at Colchester Arts Centre, whose director has a disabled daughter and therefore some empathy with the MS-UK cause. I donated all the profits to MS-UK as a thank you for their services to me in the past.
The following year, I discovered an Australian musician on social media called Geoff Achison and was pleased to find out that he had a tour of the UK lined up with some session musicians from West London that I had been fortunate enough to jam with in the past. I had no hesitation in booking Geoff Achison and the Souldiggers, with support from the very talented and once local solo blues guitarist Martin McNeill. As this was likely to be a major gig, I also got the audio-visual department at Colchester Institute involved to come and make a video of the performance, which they were pleased to do as part of their project work.
While keeping my eyes open for exciting new acts, at the beginning of 2019, I came across the incredible voice of a young lady named Helen Connelly.
‘That’s someone I’ve got to promote in another Virtuosity event’ - I thought!
The only problem was that Helen’s regular guitarist wasn’t available for the date I had in mind at Wivenhoe Bowls Club (a new local venue that I also wanted to promote) but, not to be put off, I asked my old friend and jazz guitarist Chris Allard if he would step in to help out. To complete the evening’s entertainment, I enlisted the services of Polly Haynes, a local singer/songwriter and a fantastic performer in her own right.
Lessons learned and overall satisfaction
It would be fair to say that I ran into a few problems along the way that I’ve needed help from MS-UK and others with. Everyone has to learn from their experience though, and each day with MS is a new experience to learn from.
The overall satisfaction that I’ve had from putting on these events and finally accepting the MS-UK certificate of fundraising for all my hard work has made it all well worth the effort.
Unfortunately, one of my MS symptoms was paraesthesia of the lower arms and hands, taking away the use of my fingers for manual work and stopping me playing the guitar completely. This was accompanied by other MS symptoms of chronic fatigue, poor memory and cognitive problems, which meant that whatever I did would take a lot longer to achieve than for a normal person, but I did it!
Andy raised £158.32 from his latest Virtuosity event for MS-UK – Thank you, Andy!
Danny Holland, one of our clients at our wellness centre, Josephs Court, has helped MS-UK year on year since 2016 with a sponsored head and beard shave to raise money to help people affected by multiple sclerosis (MS).
‘This is something simple I can do to, at the very least, to help raise money for my charity.’
‘I myself have MS so I can understand how much pain and discomfort others are going through. That's why I want to help them by raising money for MS-UK and by doing so, it gives me a great feeling of happiness.’
‘I participate in the hair and beard shaving challenge to raise money and I also have a very close friend of mine who helps in collecting the money.’
Danny raised £112.38 this year, bringing his grand total raised so far up to £396.72! This money helps us to run Josephs Court, which supports people with MS to maintain their wellbeing and live independently.
If you would like to raise money for MS-UK our dedicated fundraising team are always on hand to help. We have had people raise money in lots of different ways, from sitting in a tub of baked beans to skydiving! Simply call Lucy on 01206 226500 or email firstname.lastname@example.org.
It’s National Stress Awareness Day, but we all know it’s important to take stock of your mental health not just today, but every day.
Stress affects us all at some point and avoiding it completely can be nearly impossible. But taking steps to reduce it and manage your response to it, can be extremely beneficial. Research has shown that it can even help prevent new disease activity in people with multiple sclerosis (MS).
Having a long-term health condition can cause stress. With MS, there are lots of factors that might make you feel stressed. The condition can be unpredictable, so you may worry day to day about new symptoms, or whether you will have a relapse. It can make planning for the future more stressful.
Because many of the symptoms of MS can be invisible, you may feel misunderstood by people who don’t know much about the condition and may say that you seem well, when you do not feel it.
There may also be big decisions to make, such as whether to take disease-modifying drugs, and which ones. Financial worries can also cause stress if you have to alter your employment to accommodate MS symptoms.
Not everyone experiences stress in the same way, but some of the ways you may be affected include muscle tightness, upset stomach, and headaches.
You may feel overwhelmed, irritable, find it hard to make decisions, feel down and lack confidence.
You may also notice you have difficulty sleeping, a low libido, not wanting to socialise, or you may be drinking alcohol more than usual.
Many people say they have noticed stress can make their MS symptoms worse. Some experts also believe this to be the case. Some studies have also backed this up, but others have found no link. But whether or not the two are connected, excess stress isn't good for anyone. Here are three ways to help you relax.
Research has shown that meditation and yoga can reduce stress and cause changes in the brain that allow more stress resilience. Meditation slows the heartbeat and calms the mind, leaving you in a relaxed state. You can find free guided meditations online. Try www.freemindfulness.org/download
The role of exercise in helping reduce stress is well proven. One study found that exercise can not only help you manage it in the present, but it can also act as a buffer to protect you from future effects, too.
Personal trainer Dom Thorpe specialises in exercise for people with MS and offers an ‘MS Warrior’ programme online. Visit www.dt-training.co.uk/ms-warrior-programme/
Pile your plate high with prebiotics, because there is evidence that these feed the good bacteria in your gut, and improve the physiological impact of stress. Prebiotics are fibres found in foods such as chicory, Jerusalem artichokes, raw garlic, leeks and onions. When this fibre is digested by beneficial gut bacteria, the microbes release byproducts which researchers think influence brain function.
Prebiotics were also found to increase the amount of rapid-eye-movement (REM) sleep that happens. REM sleep is believed to be critical for promoting recovery from stress, with research showing that those who get more REM sleep after a traumatic event are less likely to experience post-traumatic stress disorder.
Finally, when you’re in need of a snack, you could do a lot worse than to reach for a handful of walnuts. A study found these tasty nuts and their oil may help prepare the body to deal with stress. Other studies have shown omega 3 fatty acids, such as the ones found in walnuts, can reduce bad cholesterol and inflammation markers in the body.
For more information about living with multiple sclerosis, subscribe to New Pathways magazine, your MS magazine of choice.
Travelling with a Carer: What are your options?
Are the dreary winter weather and dark evenings making you dream of sunnier climes? The world is your oyster, says writer Ella Hendrix.
Travelling or going on holiday is one of the delights of life. But, just because you need extra help, it doesn’t mean that you can’t enjoy getting away to see and experiencing new things.
It might seem difficult, but, with a bit of careful planning, anything’s possible. Although going away on your own could be an option, if you make use of a carer in your everyday life, there is also the possibility of travelling with them. There are some CQC regulated care companies that make travelling with your live-in carer possible. With this in mind, you might be able to go to places that you otherwise wouldn’t, as your carer understands your needs and limits.
Trains, planes and automobiles…
As long as you’re planning on travelling by (fairly) conventional means, you shouldn’t have a problem in most parts of the world. International flights, flights within Europe, long-distance planes, and ships should all be well equipped for everyone, including people who have limited mobility, but it is important that if you do have mobility issues you make a travel agent, airline or booking company aware of it.
You might have more difficulty if you are going to a third world country, as they often will not have the same infrastructure as we do here. However, there are usually ways around this, so speak to a booking agent to see that they can do. Make sure that you tell them that you’re travelling with a carer as this might make things easier.
One big worry for many people, when they go away, is what to do about their medication. If you are travelling with a carer you can ask them to look after your medication but there are still some things that need to be thought about in advance.
Make sure that you carry a doctor’s note and a copy of your prescription so that you can show that you are meant to have it on you, and so that you can get hold of replacements should the worse happen
Make a note of your medicine’s generic name as well as the brand. Many countries use different brands to us here in the UK
Take your medication in its packaging to leave no doubt about what it is.
Remember if it is a liquid to carry it in a clear plastic bag if you are flying
If your medication requires refrigeration you should take it in a cool bag with ice packs that last until you get to where you are staying. If you don’t have your own fridge where you are staying, speak to the management of the place to ask if you can use theirs
Carry medication in your hand luggage
Holidays in the UK
Holliday villages, trendy hostels, hotel spas and well-established hotels are good options. They are usually well equipped for people with health issues and have staff who know exactly what to do to make your stay an enjoyable one. These places are usually fully fitted with wheelchair access, have rooms which are suitable for less mobile people or those who need extra help, and are dedicated to ensuring that everybody has a good time.
It is always a good idea to get travel insurance, especially if you are going abroad. This is especially important if you have a pre-existing medical condition or specialist equipment that you want to take with you.
If you’re older, specialist insurance for the over 50s can be useful as it is more tailored. You should also remember that, whilst the UK is still in the EU, a European Health Insurance Card (EHIC) can be used alongside (but not replace) your travel insurance. This means that you can get access to state-provided healthcare if you are in an EU country.
There are many benefits to gain from going away, and with a carer, you can find the whole experience enjoyable and not too stressful – just as it should be.
So, how has this year gone for you? Have you been extra good and put smiles on everyone’s faces, or have you been more on the naughty side? We want to know if you think you are on Father Christmas’s Naughty or Nice list this year and give you a chance to donate to celebrate your niceness or redeem yourself for being naughty with a donation to MS-UK! Or do you know someone who is worthy of the Nice or Naughty list that you could nominate? It’s up to you!
Whether you donate £1 or £1,000, we hope that you get a lovely warm feeling from knowing that you are helping us to support people affected by multiple sclerosis (MS). Our charity is hard at work improving the lives of people with MS through counselling, our helpline, our wellness centre Josephs Court and through working to increase understanding of MS. MS-UK does not accept any statutory or pharmaceutical funding so that we can stay independent and offer completely unbiased information and support. This means every penny donated really will make a difference to our work.
It’s time to decide – naughty or nice? Tell us how you or someone you would like to nominate has been this year and with a donation, however small or large, their name will be on the MS-UK Nice List this Christmas. Just visit our JustGiving page at www.justgiving.com/campaign/NaughtyorNice
Thank you for everything you do to support us – you make all of our work possible!