Healthcare services have been failing people with neurological conditions like multiple sclerosis (MS) for far too long. That’s a fact. The number of people living with neurological conditions in England is rising and will continue to increase. But, for a number of years now, neurology has not been a national priority for the NHS. Research shows that those living with progressive neurological conditions are experiencing delays in diagnosis and treatment, fragmented and uncoordinated services, limited availability of neuro-specialist rehab and reablement and a lack of psycho–social support.
This inequality is simply not fair.
The NHS RightCare Toolkit for Progressive Neurological Conditions has been developed to help change that and ensure people living with brain and nerve conditions like MS, Parkinson’s and Motor Neurone Disease (MND) get the care and support they need and deserve.
Seven charities (MS Trust, MS Society, Parkinson’s UK, MND Association, Sue Ryder, MSA Trust and PSP Association) joined forces with NHS experts to produce the toolkit. The hope is that Clinical Commissioning Groups (CCGs) will take full advantage of this unique opportunity; that they will use the practical, clear and innovative guidance the toolkit provides to tackle some of the big challenges people with these conditions face and ultimately improve healthcare services for this group, now and in the future.
If implemented in the right way, the numbers speak for themselves: up to 2,500 emergency admissions to hospital a year could be avoided for patients with these conditions as a result, with up to £10 million freed up to fund improved services.
So what does this mean for people with MS? The toolkit outlines four priorities that need addressing in MS care: improving the efficiency of disease modifying drug management, better use of data and technology to free up the valuable time of MS specialists, holistic support for people with advanced MS, and more MS specialists from different areas working together to provide joined-up care.
MS health professionals do an incredible job with the resources at their disposal and we know that many services are already delivering high quality care - the toolkit has real-life examples of best practice from across the country. But we want to help all areas reach the same high standard and make this best practice a reality for all. We will work closely with the other charities involved to support efforts to see the toolkit implemented effectively, with the shared aim of improving care for everyone living with a progressive neurological condition in England.
This blog has kindly been written by the MS Trust. To find out more about them visit the MS Trust website or if you’re living with MS and would like to share your experiences of healthcare, please get in touch with the MS Trust at email@example.com.
Earlier this month, Gary Beck and I did the Prudential RideLondon-Surrey 100 event. My wife Diana is Head of Services for MS-UK and I went with her as a volunteer supporter at the Virgin Money London Marathon in April. I was so inspired by the experience that I wanted to do something myself. I didn't think I had a marathon in me but when I heard that I could support the charity with a 100 mile bike ride I signed up immediately. I work with Gary and when I told him I'd signed up he said he'd do it too!
The most interesting thing about all the training (and there was lots of training!) was that you get to see all sorts of things on a bike that you don't see from a car. I've nearly run over dozens of pheasants, seen stoats and weasels, a buzzard that nested at one of my stopping places, foxes and deer and I've even seen a snake for the first ever time in this country. I can also guarantee that potholes are worse on a bike than they are in a car!
Gary was responsible for a lot of the fundraising and he managed to twist the arms of a lot of people at his golf club. I have to say a big thank you to the Colne Valley Golf Club Swindle Members who raised over £250 between them. I also have to thank my employer, Gallagher, which has a charity commitment to double anything it's people raise. Thanks Gallagher! That's my main tip - a lot of companies will match any funds raised by their employees so it's always a good idea to ask.
Perhaps the funniest thing to share is that I've broken my vow never to wear Lycra. I can't say I'll be rushing to buy any more Lycra gear but it did the job on the day.
I thoroughly enjoyed this event. I enjoy cycling but I've never done anything like 100 miles before. The only thing I'd really say is that if you fancy doing something like this but aren't sure if you can do it then have faith, you'll be surprised at what you can do.
We have places in #TeamPurple for the Prudential RideLondon-Surrey 100 2020! A lasting legacy of the 2012 London Olympic and Paralympic Games, this event sees more than 25,000 cyclists take on 100 miles from Queen Elizabeth Olympic Park, through the city and onto Surrey's stunning country roads and the Surrey Hills before the brilliant finish on The Mall in central London. Could you be one of them? Every penny you raise will help MS-UK support even more people affected by multiple sclerosis (MS).
Hi, I’m Cathy Howard, I’m 51 and have secondary progressive multiple sclerosis (MS). I was originally diagnosed with relapsing remitting MS in 1998 at the age of 30 and I later took ill-health retirement from work in early 2015.
I use two sticks to walk short distances, or a wheelchair or scooter if I’m going out. I applied for the Simvastatin trial as I was conscious that apart from some fundraising for MS Society and MS-UK over the years, I’ve never really done a great deal for others with multiple sclerosis (MS).
The MS-STAT2 trial is a double-blind study, which means that I don’t know whether I’ll be taking Simvastatin or a placebo, and neither do the Drs who administer and regulate it. To be honest, although it would be a bonus to me if I took the drug and it worked, I’ll be happy just participating. I will be sharing my experience of participating in the trial through regular blog posts on the MS-UK blog, so watch this space!
Today is my screening day appointment (19 August 2019). I got up ridiculously early because my husband John was stressed about us getting the train with booked assistance for me in my wheelchair. Bleary-eyed we head out to the station. I was eager for my first coffee of the day.
The train was on time and we got to UCL Queen Square Institute of Neurology in London about 45 minutes early. Dr Tom Williams, MS Clinical Research Fellow, came to meet us and escorted us through the rabbit warren of corridors to the trial room. Here I had my second cup of coffee and I’m started to feel awake.
Tom introduced Dr Nevin John, MS Medical Clinical Research Fellow, who is also part of the study. Nevin advised me about the trial, what to expect and possible side effects of statins. He asked me questions, completed forms based on my replies, and requested for me initial consent forms. There is so much paperwork and record-keeping involved!
I then had a basic physical examination, including blood pressure and blood oxygen levels, and my heart and breathing listened too. My height and weight were checked and I had various vials of blood taken for testing.
I also agreed to take part in a brain oxygen study and mSteps smartphone analysis. I was wired up to the brain oxygen study machine and computer and baseline readings were taken. Then I had three separate minutes to say as many words as I can that start with a selected letter. Not as easy as you may think! From the problems I had, I expect I’ve got very little oxygen reaching my brain!
An app is being developed to accurately record walking distance and speed etc. I had a mobile phone with the app on it strapped to my arm and was asked to walk short distances. This also served for the walking part of the MS-STAT2 screening process.
All in all, it was a very interesting appointment. I was completely exhausted by the time I got home but felt like I’d actually done something productive and I’m smiling as I write this! This is it for now, but I’ll update you all on the next part of my journey very soon!
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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Last year I went along to the Swim Serpentine to cheer on our amazing supporters as they took part - I was blown away. The festival atmosphere and the fantastic efforts of all the swimmers really inspired me.
As a rule, I'm not one for sporting activities. Last time I did some fundraising for MS-UK I sat in a bath of baked beans - it didn't exactly need high levels of fitness! But that was some years ago and I felt it was time for a new challenge so I decided to take on the Swim Serpentine this year. As I work at MS-UK, I know that every penny makes a real difference to people affected by multiple sclerosis (MS). I also get to meet people affected by this condition in lots of different ways and I am always so in awe of people who live life to the full with MS. It feels great to give something back by fundraising, but also it feels great personally to take on something new.
However, it's not all plain sailing when you take the plunge, so here are my top tips for new open water swimmers...
There are so many more tips that other swimmers could share, but here's my top five. For everyone taking on the Swim Serpentine this year, good luck and I will see you there.
Just keep swimming!
We have just two spots left in #TeamPurple for this year's amazing Swim Serpentine event - do you fancy taking the plunge?
On Saturday 21 September the annual Swim Serpentine will be held at Hyde Park in London. It’s a one-day open water swimming festival where many swimmers will take part and raise money for charities - and you could take on the challenge for MS-UK!
Not only is it the same location as the open water swimming competition that was held in the London 2012 Olympics, there is an array of amenities that will help the brave swimmers through the two mile swim. These include a dunk zone, heated changing rooms, hot tubs and a pontoon start and finish.
With over 6,000 people diving into the challenge last year, we can only expect more success in 2019.
Until September, just keep swimming!
Events Fundraiser, MS-UK
Mummy hasn’t been very well recently, and she has had lots of symptoms like the ones people with multiple sclerosis (MS) get. After she found out more about MS, Mummy thought it would be a nice idea for me to fundraise, and we chose to fundraise for MS-UK.
I took part in the UK Kids Fun Triathlon York on Saturday 13 July. First, I had to swim 75 meters (three lengths of the pool), then I cycled 3km and finally, I ran 1,400 meters. This was the first triathlon I’ve ever done and it was lots of fun. I trained as hard as I could for it and everyone was so proud of me when I had finished. Mummy was with me on the day and she helped me a lot in the transition area.
Lizzie Selby raised £260 for MS-UK and every single penny will go towards helping those affected by MS. If you would like to do something to support MS-UK, then get in touch with Lucy today! Simply email Lucy@ms-uk.org or call 01206 226500.
Yesterday 40 cyclists took on the Prudential RideLondon in support of MS-UK. It was a great day and the sun was certainly shining!
Most of our team members were new to the event and everyone loved taking on the infamous Box and Leith hills as they made their way along the course.
Commenting on his experience of taking part in this year’s race, Jonathan Pike said, ‘Riding the ‘Pru 100’ was one of the best experiences of my life. It was challenging but rewarding in equal measure. I am happy with finishing it incident-free but even more happy to have broken my personal fundraising target for such a great cause.’
Henry Phillips who also participated said, ‘Working with MS-UK has been an absolute pleasure from the moment we signed up. The MS-UK team make the experience a lot of fun by regularly catching up with us while training and also creating a community feel with other #TeamPurple participants. And to cap it all off the ride went amazingly well and we managed to smash our fundraising target in the process!’
MS-UK Community Fundraiser Lucy headed up the cheer point at mile 99.5, with the support of some of our brilliant volunteers. All of them were amazingly energetic the whole day, supporting every rider that came past including of course #TeamPurple and making it a memorable experience for all who took part.
Sarah Russell, a volunteer, said, ‘It was such a great experience. A fantastic opportunity to be loud and proud for #TeamPurple and the rest of the cyclists.’
MS-UK Events Fundraiser Jenny said, ‘I would like to say a huge thank you to all the team for their hard work in training for and completing this challenge. The team has so far raised over £14,000. MS-UK is here for anyone affected by multiple sclerosis, to empower them to live healthier and happier lives by improving the understanding of MS and providing support where it is needed most. The funds raised from this event will go a long way in helping MS-UK to achieve this.’
Has this event inspired you to dust off your bike and go for a ride? The date for next year’s Prudential RideLondon-Surrey 100 will shortly be announced, so do get in touch with Jenny to register your interest. Simply email firstname.lastname@example.org or call 01206 226500.
I made a promise to my dad twenty years ago that one day I would do a charity event and raise money for multiple sclerosis (MS). My dad is 83 and had relapsing-remitting MS for 40 years and I have seen first-hand how this disease not only affects the person but also the family.
So, after twenty years of procrastinating, my partner Anne-Marie and I decided to finally hold true to my word. I was already in the RideLondon-100 so we looked at MS charities for Anne-Marie. Thankfully we spoke to Jenny at MS-UK who was enthusiastic and welcoming and that sealed our decision.
I know a lot of people use charity places as a way of getting into an event they wanted to do anyway but if there was one bit of advice I could ever give someone, it would be to pick a charity that means something to you.
For all those rainy days you don’t feel like training, for all the times your bum hurts (even with a litre of chamois cream slapped over it), for all those times you are halfway up a steep hill wondering why you aren’t slouched on the couch chowing down on popcorn, knowing why you are putting yourself through this makes such a difference to your resolve and dedication.
Training went well until one sunny May afternoon, I had a collision with a car whilst out cycling. The end result was a road closure, ambulance, two police cars, a suspected broken leg, injured back and hand, stitches in the chin and my bike was written off.
Subsequent x-rays and MRIs to my hand and leg miraculously showed nothing broken. By sheer chance, the angle of my knee prevented a far more serious long term knee injury occurring so I feel incredibly lucky.
Nevertheless, I was told I would be on crutches for up to 10 weeks and that all cycle events would be out until September.
This was devasting for both myself and Anne-Marie.
To put this into perspective, Anne-Marie is not a confident cyclist. She has never ridden on her own so the thought of her cycling 100 miles solo scared her to death.
She continued to train on an indoor bike in the gym but only for an hour at a time which wouldn’t be enough to get her in shape for a 100 mile ride outside.
She also suffered far more than me after my accident. My damage was physical but Anne-Marie’s was mental. From a lack of sleep due to nightmares leaving her exhausted, from having to be my carer for five weeks leaving little time for the bike, to seeing her partner in almost constant pain, her confidence plummeted.
But this is where choosing a charity that means something to you is so important. Despite all her fears, she knew she wouldn’t pull out. It was too important a promise to go back on.
After a few weeks of mental turmoil, she made a last-minute decision to try the Tour of Cambridge on her own. A massive feat for her and one I am so proud of her for.
In the meantime, I had been rehabbing for up to two hours a day. I developed a huge admiration for people like my dad who, because of their MS, have to ‘rehab’ every day just to keep mobile and functioning.
I remember the first day I managed to do a full revolution of a pedal stroke in the gym. It took me 10 minutes to get my leg over the top of the pedal stroke and it felt amazing. Within a week I managed five minutes on an indoor bike. A week later I double that time to 10 minutes and a week later I tried 20 minutes. Each time I felt exhausted and despite the Physio telling me there was no way I would get to the start line of the RideLondon, the prospect of being there with all the other MS-UK riders really made me want to give it a shot.
Despite everyone telling me not to overdo it, I cautiously overdid it and increased my longest ride from 20 miles to 25 to 35 to 53 to 70 miles on subsequent sessions with Anne-Marie always by my side.
At the end of each ride, I felt exhausted and would fall asleep in a sweaty mess.
So here we are today. My max longest ride will have been 70 miles. I don’t feel ready for the event, my hand still hurts but I’ll give it a jolly good bash. I can honestly say if it wasn’t for the importance of the charity, I wouldn’t have tried anyway near as hard on the rehab. Anne-Marie would have certainly dropped out of the event too but she feels a connection to the charity through me and my family.
Seeing the effort families put in to helping their loved ones, seeing the effort those suffering from MS put into daily life means that you can’t help but feel motivated and inspired to put that little bit more into your own daily life.
For those who are reading this who are doing the event, I look forward to seeing you on the start line. I also look forward to seeing you (hopefully) at the finish line.
It’s all for a great cause and the journey has been unexpectedly up and down but also an amazing growing experience for both of us.
Good luck everyone and go #TeamPurple!
David Bint and Anne–Marie Cannon
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.