I hope you are all keeping safe and well. I'm writing to you today to update you on the progress of our urgent appeal. Thank you to everyone who has already contributed, your donations will help ensure we can continue to support people affected by multiple sclerosis (MS). MS-UK saw a 44% increase in calls to our helpline in the first month of lockdown alone, with the MS community searching for essential information and emotional support. We have also seen a surge in demand for our counselling service, so it is clear to us that our community needs us, but like many other charities, we are facing very uncertain times. With fundraising events cancelled we estimate a loss of £300,000 as a direct result of COVID-19 in 2020 alone.
Our recently published Loneliness and Isolation report revealed that before COVID-19, 71% of people living with or affected by MS in the UK experience loneliness and isolation, or have done in the past. We knew all too well just how damaging this pandemic could be to our community, so we quickly found ways to adapt our services to maintain the essential support our clients need from us on very little or no income to ensure no one has to face MS alone. Our clients have seen the value and truly appreciate these new ways of receiving support, like our online accessible exercise classes and coffee mornings, but we need your donations to ensure we can continue to be here for those who need us most now and in the future.
Living with MS can be isolating enough without having to deal with the complications a pandemic brings and as the country begins to emerge from lockdown, for people living with MS life could become even more complexed. They will have many more questions, such as is it safe to return to work, can I socialise with my family, should I take my MS drugs, and our helpline team will seek out the best information and resources available so they can make informed decisions about how they too can return to ‘normal’ life.
The pandemic is not over and there are more uncertain times ahead, but together, with your help, we can ensure people living with MS emerge from lockdown safely and with the right support. It costs £2,520 to run the national MS-UK Helpline for just one week and a single counselling session for someone struggling with their mental health costs £50, so any donation you can make, big or small, will help us sustain our all-important services. To make a donation visit www.justgiving.com/campaign/MS-UKAppeal, text URGENT5, URGENT10 or URGENT20 to 70456 to donate £5, £10 or £20, or you can send a cheque to FREEPOST MS-UK.
Early summer so far has seen some glorius weather so far but, whilst some may bask in the fact that we’d normally have to pay to go on holiday to get this heat, others may have feelings on the opposite end of the spectrum. People who are affected by multiple sclerosis (MS) have widely differing symptoms when it comes to heat sensitivity. Here are some tips to help you in the hot weather.
1 ) Think about your clothing
Whilst wearing shorts or loose clothing are obvious ways of keeping cool, changing your choice of footwear ican make a big difference, too. Wearing trainers or closed-off shoes can affect your whole body in hot weather, as there are lots of pulse points around your feet and ankles. Liberate your feet with appropriate sandals to help them breathe, or alternatively, dunking your feet in some cool water when you take off your shoes to cool off!
2) Chilling your sheets before bed
Despite being only a short-term solution, chilling your sheets in a sealed bag in the fridge for a couple of hours before you go to sleep can help you feel cooler, or try the freezer for faster results. Although your own body heat will warm up the sheets fairly quickly, it can help your body cool in that period, which in turn could help you drift off to sleep easier.
3) While you’re out of the house, close your curtains
When you leave your curtains open, it allows sunlight to come through and essentially heat the area like a greenhouse. When closed, the curtains will prevent this greenhouse effect beyond your window sill and keep your house much cooler. It can make a huge difference, especially if your house faces the sun.
4) Unplug electricals that aren’t in use
Plug sockets that are filled with electronics that you aren’t using will generate more heat. If the plugs become too hot, especially in a heatwave, it increases the chance of a fire hazard as well. So it may be a good idea to lose the unnecessary electricals at this time of year!
5) Invest in Kool-Ties or Cooling Vests
Kool-Ties are simply something you tie around your neck, can work for up to three days, and cool the whole body through cooling your neck. Cooling Vests have special cooling crystals incorporated into the material which are soaked in cold water, then can hold the temperature for a substantial period of time. You can even get versions for dogs!
Other ways to help keep cool in this hot weather can be taking regular cold drinks and wrapping a cold damp towel around your neck.
Last week, the government sent letters out to, or in some cases phoned, people in the UK it deems to be most vulnerable and at risk from the coronavirus. The letters call for people in this category to ‘shield’ or self-isolate for 12 weeks, starting from the day they receive it.
This is to protect the most vulnerable people in society.
Many people with multiple sclerosis (MS) will receive the letter, but lots won’t too. That’s because the condition is different for everyone. You are considered to be in the highest risk group if you
Those self-isolating because they have recently taken alemtuzumab or cladribine will only need to do it for the 12 weeks from their infusion.
Those self-isolating for HSCT should ask their medical team about the length of time they need to continue for, as it may now be increased.
All the government’s letters should have reached people by Sunday 29 March. If you think you should have received one but haven’t, and have not been contacted by your GP, call your hospital doctor or GP, or contact them online.
Even if you receive a letter and you don’t think you are in the at-risk group, you still have a right to self-isolate for 12 weeks, and you should do this to protect both yourself and the NHS.
If you are classed as vulnerable and are worried about getting essential supplies, you can register for help here https://www.gov.uk/coronavirus-extremely-vulnerable
The MS-UK Helpline team have been working really hard to answer all of your questions around how coronavirus will affect your multiple sclerosis (MS). Here are some of your frequently asked questions answered.
I’m taking a disease-modifying drug for my MS, does this leave my immune system compromised?
The answer to this question depends on which MS drug you are taking. Some will leave you with a weakened immune system and others won’t. The MS Society published some useful guidance on which drugs leave you most susceptible. Click here to read more. For more information about coronavirus and disease-modifying therapies in MS the Association of British Neurologists (ABN) has also released some guidance.
I have MS but do not take any immunosuppressant drugs, how will coronavirus affect me?
For the first time yesterday, the PM announced that people with MS should be practising social distancing. Social distancing encourages those that can to work from home, avoid large public gatherings and public transport, and avoid anyone displaying symptoms. Click here for more information.
Someone in my house is living with multiple sclerosis. What can I do to protect them?
You can also practise social distancing with them to reduce your chances of contracting the virus and bringing it home. Taking it one step further, the person living with MS in your house could self isolate in one room away from the rest of the household to further limit their chances of contracting the virus. Click here to see the guidance on social distancing and self-isolation.
For the latest information on coronavirus, visit www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response.
Every year at MS-UK we get into the Christmas spirit with a team lunch and Secret Santa. It's a great time to come together and reflect on the past year.
This year we decided at MS-UK to do something in our local community too - so we organised a food bank donation. Over the weeks tins and essentials kept piling up beside my desk and I kept thinking, this must be it? But no, our lovely staff kept giving and I was absolutely thrilled to be able to deliver 36.2 kilograms of items to our local foodbank in Colchester earlier this week!
Over 90% of the food distributed by foodbanks in The Trussell Trust network is donated by the public – everyone referred to them is offered a balanced and nutritious three day supply of food.
You can find out more about them on their website. When I went along to drop off our donation the staff were really helpful and were thrilled we had pulled together to do something in our area!
A big thank you to all the staff at MS-UK for getting involved - hopefully we have begun a new tradition!
I just wanted to let you know our opening hours for the festive period as we get closer to the mince pies!
Tuesday 24 December - Open 9am to 1pm
Wednesday 25 December to Wednesday 01 January - Closed
Thursday 02 January - Open from 9am
If you attend our wellness centre in Essex, Josephs Court, we will also be opening for a couple of days so you can continue your exercises throughout the festive period. Josephs Court will be open from 9am to 1pm on Friday 27 December and Monday 30 December.
During the holidays, you can always contact our helpline team and we will respond in the New Year when we return.
If you would like to speak to someone before then, the Samaritans are open 24/7 and you can contact them in a variety of ways. You can visit the Samaritans website or call them on 116 123.
Wishing you a merry time if you are celebrating Christmas and a very happy New Year from all the teams here at MS-UK!
Head of Services
MS-UK is celebrating this week after achieving a Trusted Charity Mark award recognising the excellent work it does in the third sector across the UK.
We were awarded the highly respected status after being recognised for effective governance and management by the National Council of Voluntary Organisations (NCVO).
Trusted Charity is part of the National Council for Voluntary Organisations (NCVO) and is the only UK quality standard designed to help third sector organisations operate more effectively and efficiently. We were assessed against the 11 standards of effective practice in Trusted Charity, including in governance, leadership and management, managing staff and volunteers and managing money, and proved to meet all standards.
‘We are delighted to receive recognition for the hard work we put into running MS-UK. Good governance and management is essential to maintain the high standards we have set at our charity and we owe it to people affected by multiple sclerosis (MS) and our supporters to ensure these are maintained so we are here for many more years to come,’ says MS-UK CEO, Amy Woolf.
MS-UK is a national charity that supports many of the 130,000 people affected by multiple sclerosis (MS) in the UK, that's one in every 500. We are here for anyone affected by MS, to empower them to live healthier and happier lives. We aim to improve the understanding of the condition and providing support where it is needed most. We offer a number of supportive services, such as MS-UK Counselling, the MS-UK Helpline, its magazine New Pathways and its Essex-based wellness centre, Josephs Court.
Nadeem Razvi, Trusted Charity Programme Manager, NCVO said, “We are delighted for the trustees, staff and volunteers of MS-UK that they have achieved the Trusted Charity Mark. We know that organisations using the Trusted Charity standard have better governance, better systems and procedures and better quality of services for their users and it is great that the community of Trusted Charity users in England/Wales/Scotland/Ireland is growing”.
The last few months have marked a period of change here at MS-UK for our trustees.
We are wishing our Chair of the Board of Trustees, Martin Hopkins a fond farewell as he retires from his post after 12 years of service to MS-UK. As Chair, Martin oversaw a huge amount of change at the charity, including our launch of Choices booklets, our live web chat service and change of name.
Martin says, ‘One of my best friends was diagnosed with multiple sclerosis (MS) and have seen him deal with the shock of that I felt fairly helpless in terms of the practical support I could offer. I thought therefore that becoming involved with MS-UK would be a way of providing support.’
We wish Martin all the best for the future and we know he won’t be a stranger.
Stepping up to the Chair’s role will be Trustee Matthew Swan. Matthew is a Commercial Manager in the banking sector, is a treasurer for another national charity and is the Deputy Chair for the Colchester Mercury Theatre.
Matthew says, ‘MS-UK is an organisation which does tremendous work to help all affected by MS and I am very fortunate to have the opportunity to work with the Board and staff to help in any way I can to achieve the organisation's goals and aspirations.’ We look forward to welcoming Matthew to this role.
Laura lives in Colchester with her family and is a registered Occupational Therapist working as Head of Clinical Operations at St Helena, a hospice charity in north Essex. MS is one of the life-limiting illnesses that Laura helps to support in her role.
Laura is a strong believer in choice and independent living in spite of, and not limited by, a life-limiting diagnosis.
From a personal point of view, Laura’s sister-in-law lives with MS and as a family member, Laura has followed and supported her journey to date.
Charlie Stebbings is 25 years old, currently living in London and works for a sports, media and entertainment headhunting and consultancy firm. In his spare time, you’ll normally find him watching or playing some form of sport.
He has been exposed to the harsh realities that MS can bring for the last 10 years when his mother was diagnosed with relapsing remitting MS.
MS-UK was the charity that he identified with most strongly and therefore when the opportunity arose to take up the position of trustee, Charlie says it was an easy decision to take.
‘The work MS-UK does is integral to the fight against MS and ensuring that those who are affected in any way have the support and knowledge to best deal with the condition. Whether you, a family member or friend have a diagnosis of MS, learning to live with the condition is a challenging task for all and there is no substitute for having the support of those professionals who you know are always there to help if needed,’ Charlie said.
Charlie believes there is plenty of opportunities for him to influence the fantastic work currently undertaken by MS-UK and he can’t wait to get started.
We are sad to see Martin retire from MS-UK and wish him all the best for the future. This is an exciting time for MS-UK to look forward to all of the amazing work we can do with our new look Board of Trustees.
This weekend I had a fantastic day cheering on our amazing #TeamPurple swimmers at this year's Children with Cancer UK Swim Serpentine - thank you to everyone who made the day possible! The water was a lovely 17 degrees and the sun was shining as we made our way to Hyde Park to set up our MS-UK stand in the festival area.
We were thrilled to have 21 swimmers taking on challenges in this year's swim and every penny they have raised will help us continue our work supporting people affected by multiple sclerosis (MS). Our fantastic fundraising total already stands at over £10,000 and it makes such a difference to our work at MS-UK, thank you!
A thousand people at the event achieved their London Classics Medal this year, including four of our very own #TeamPurple swimmers - congratulations! One of our London Classics Medal winner even learnt to swim this year just to get it on Saturday!
A massive well done to everyone who took part in the Children with Cancer UK Swim Serpentine and thank you to everyone who volunteered with us on the day to make it such a special atmosphere for our amazing swimmers.
Can't wait for next year!
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.