I write to you today with some very difficult news. MS-UK has been significantly affected by the Covid-19 pandemic. The team have worked incredibly hard to offset the huge reduction in our fundraising income this year while adapting our service delivery to ensure no one is left to face multiple sclerosis (MS) alone. As a result, we have seen a significant rise in the demand for digital services, but our prospects for 2021 look set to be even more challenging.
Given the impact that the pandemic has had, and will continue to have on fundraising events and our economy generally, and therefore all our income streams, it is unlikely that we will have the funds to continue to operate in our current form beyond next year.
We also recognise that the pandemic has accelerated the digital agenda and presents us with many opportunities to support even more people affected by MS than ever before.
We felt it was only right to review our strategy to ensure that despite the adversity MS-UK is facing we can stay true to our values and continue to support as many people affected by MS as possible in their time of need.
However, this has led us to make some very tough decisions to ensure we can still be here in the future. After long and careful consideration it brings me great sadness to tell you that the board of trustees and management team at MS-UK have made the very difficult decision that we will no longer offer face-to-face services. This means that we will be closing our wellness centre, Josephs Court. We do not wish to leave our clients unsupported, who we know will be as upset by this news as we are, so we will be working with our clients to establish how we can best support them through a transition period to online services.
We remain committed to supporting people affected by MS both nationally and locally. We will work with the MS-UK steering group to explore how we can not only continue the remote services that we have provided since the pandemic began but also how we can expand our online services so that, in time, we may offer a wider range of digital services to provide holistic support to even more people affected by MS than ever before.
We know that Covid-19 isn’t going to go away overnight and the country will be dealing with the repercussions for months and even years to come. The road ahead is uncertain and we will continue to consider every available opportunity with the best interests of the charity and the people we support at heart.
On Tuesday 14 July MS-UK will be launching our national exercise classes on Facebook Live specifically designed for those with multiple sclerosis (MS). Each week we will be hosting two live classes via Facebook. This will include an upper-body class on Tuesdays and lower-body class on Fridays both at 1pm.
The classes are designed to be accessible and inclusive for all. Both classes will be broken down and an alternative exercise demonstrated to ensure participation for all clients regardless of the individual’s ability.
The sessions will last approximately 30 minutes and will be delivered by MS-UK’s Wellness Coaches. Our Wellness Coaches are Level 4 exercise specialists who have over 13 years’ experience working with our clients in MS-UK’s wellness centre. The session will focus on correctional exercises, co-ordination, balance, mobility and strengthening exercises. The exercises performed during the class will offer the opportunity to take away from the class and be performed independently.
- Main session (neural engagement, co-ordination, strength and stability)
- Cardiovascular (pulse raiser)
Some equipment can be used during the classes that you will find around the home. These include two food cans (or light gym weights (1-2kg max) if you have them), bath towel, walking stick/broom handle and carrier bag.
How to join us on Facebook
If you already have a Facebook profile you just need to search @MultipleSclerosisUK or click this link www.facebook.com/MultipleSclerosisUK/ to visit our Facebook page at 1pm on your chosen day. The live feed will appear on our profile page. If you do not have a Facebook account you can set one up by following these instructions.
I am Nigel Watts and as I am unable to participate in “walks” or “runs” to raise funds for MS-UK, instead I have volunteered my time, either at home or in the MS-UK office, to help with identifying potential 3rd parties to approach for future funding and to provide taxi transport for some of the clients who attend its wellness centre, Josephs Court. I have also contributed to the existing Choices leaflets, proofreading for consistency, grammar and spelling.
In addition, I have completed an MS-UK Helpline case study and I am one of the founding members of the MS-UK Steering Group which meets every two months. Even under the current lockdown measures, we still meet using Zoom!
The MS-UK Steering Group is made up of seven volunteers who use Josephs Court and is led by Centre Manager Dean Jeffreys. The purpose of the MS-UK Steering Group is to discuss how the centre is working to satisfy the needs of members who use the facility, any suggestions of improvement or change. It is also a great place to just chat about life in general. Anything discussed in the group stays in the group.
Outside of Josephs Court, I am still able to volunteer through putting together mailing lists online for MS nurses, neurologists, MS therapy centres and pharmacies.
I have found my time volunteering both at home and at Josephs Court very fulfilling as the challenges have kept my brain working. Volunteering is also a pleasant change from playing Solitaire or Sudoku!
I wanted to let you know that MS-UK staff are now working remotely to ensure that we can keep as many of our services available to support people living with multiple sclerosis (MS) as possible.
Due to a high volume of calls, responses from our helpline service may be delayed. However, if there is no one available to take your call please leave information about your query, email address and telephone number and a Helpline Information Officer will get back to you as soon as possible. Please note that it is likely that we will be able to respond to emails faster than telephone messages and that you may receive responses outside of office hours. To contact the MS-UK Helpline email firstname.lastname@example.org or call 0800 783 0518.
The MS-UK Counselling service will continue to run as normal and is unaffected. To register for MS-UK Counselling visit www.ms-uk.org/counselling.
If you attend Josephs Court, we will be ensuring you hear from us regularly and have created some exercise videos to support your activity at home. You can find them on our YouTube channel.
We appreciate your support and wish you all well during this challenging time.
Amy Woolf, CEO of MS-UK
We hope you are keeping well during this difficult time. As we are sure you are all aware, by now you should all be self-isolating and minimising your social interactions. We know how important it is for people living with multiple sclerosis (MS) to exercise, it can keep you MS at bay, help you maintain your mobility and it's also good for our mental health. Which is why our wellness coaches from Josephs Court have put together several accessible exercise and mobility routines which can all be done from the comfort of your own home!
All of the videos are available on our Youtube channel www.youtube.com/ms-uk so give them a try and let us know what you think! Is there something else you would like to see? Let us know and we can create more great content just for you.
If you are having any specific mobility issues or would like advice from our wellness coaches on exercise and mobility, please do not hesitate to send us a message on our Josephs Court Facebook page.
Enjoy and stay safe,
Click the images below for links to each exercise video
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’s Helpline team recently worked with MS-UK’s wellness centre Josephs Court in Essex to run an information session relating to services and support organisations working with people in its local community.
The session was well-received with one attendee saying: ‘I enjoyed the variety of different topics and the speakers. It was informative and gave us the opportunity to meet new people and share experiences.’
The MS-UK Helpline and Josephs Court teams worked together to bring in a range of guest speakers from a variety of organisations to give short presentations on their services, the support they provide and how they can help people with a disability.
The first speaker was Lesley Bysouth, Head of Communications for Motability. Lesley spoke about the fact that since it was set up in 1977, the Motability Scheme has provided over 4.5 million vehicles and has helped millions of disabled people and their families to enjoy the ‘road to freedom’. She let us know that last year they awarded more than 8,000 grants for wheelchair accessible vehicles, driving lessons for disabled people, advance payments for leased vehicles, adaptations, powerchairs and mobility scooters.
To join the Motability scheme, a person must be in receipt of the following benefits:
• Higher Rate Mobility Component of the Disability Living Allowance (DLA)
• Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP)
• War Pensioners’ Mobility Supplement (WPMS)
• Armed Forces Independence Payment (AFIP)
An individual interested in joining the scheme will need to have at least 12 months remaining of their allowance when they apply.
Click here to find out more information about how the Motability scheme works.
Next, we heard from John, a volunteer for Age UK Essex. John spoke passionately about his volunteering role and then spoke about the range of services the local charity has on offer for the over 50s. It was impressive to hear about the full range of services the local charity has to offer. They deliver information and advice, befriending, home help and much more.
Age UK Essex is a charity in its own right but is affiliated to the national organisation Age UK. Age UK has a range of detailed factsheets, a helpline and other services and they support and work with many other local Age UK charities. To find out what is in your area and the support they provide click on this link. You may well find that your local Age UK gives a wide range of options from practical help with welfare benefits and handyman services through to emotional support such as befriending and companionship support.
We then heard from Georgina Delves an Assistant Engagement Officer with Community 360, a Community and Voluntary Services hub organisation working across Colchester, Braintree (with some services in Tendring too!).
Georgina talked about the support the organisation gives to charities and third sector organisations and the services that they directly deliver such as community transport schemes and Shopmobility. Then Georgina let us know about the ‘My Social Prescription’ scheme, this exciting project helps people with a social need connect with local and appropriate community groups, clubs, peer networks and much more. Their skilled and knowledgeable team will help people map out the resources that are in the community and helps people find the right service, in the right place, the first time.
The Kings Fund has written about social prescribing and how it is being adopted up and down the country. There may well be a service in your area. If this is of interest to you, it is likely that either your GP practice or your local Community Voluntary Services hub will know.
After a cup of tea and a biscuit (or two!), we heard from Yvonne and Rosie from Carers First. Carers First is a large organisation working with and for unpaid/family carers across Kent, Essex, Lincolnshire, and some London boroughs. Yvonne and Rosie told us about the local services the organisation delivers and also talked about the rights that unpaid or family carers have to a carers assessment as well as rights in employment. It is almost certain that there will be a carer support organisation working in the area in which you live. Your local council will have information on how to get in contact with them if you are not already.
The next organisation we heard from was from a housing and support organisation that provides floating support or community outreach services. Peabody’s outreach support is a service that will work with people with a ‘housing-related need’ on a short term basis. The service is there for anyone in Essex over the age of 16 who needs support, guidance or advice. They can work with anyone regardless of their housing status, for example currently homeless, living in local authority homes, privately rented properties, as a housing association tenant or an owner or occupier. They can give help to resolve benefit and debt issues, help with problem neighbours, support people to gain skills to live independently and help people feel more confident.
Floating support or housing related outreach services are fairly common up and down the UK, some local authorities only fund it for certain groups of people (for instance people that are homeless or who are under 25 and have a housing need). If you want help to find a similar service in your area. Feel free to contact our MS-UK’s Helpline team and we will happily see if we can help find a relevant service.
The services and groups covered in our information session are just a snapshot of some of the services and support organisations working across the local area to Josephs Court.
Ryan, a Helpline and Information Officer with MS-UK’s Helpline then spoke about ‘filling some of the gaps’ and let the attendees know about just some of the other local options for getting help:
We are sure that there are other services, organisations and volunteer-led groups out in your community, up and down the country and often across the whole UK doing great work and giving the help that you and others need.
If there’s an organisation that you value that you think we should know about, please do get in touch on 0800 783 0518 or email us on email@example.com.
This week is national Volunteers' Week and we are celebrating by saying a big thank you to our amazing volunteers. Last year over 130 people volunteered with MS-UK in all sorts of ways. Together you donated 500 hours of time to MS-UK and helped us be here for people affected by multiple sclerosis (MS). We literally couldn't do it without you, thank you!
This year we have lots of opportunities to get involved. You could join our fantastic cheer squad and support our fundraisers to make it over the finish line at a national event. Or you could come into our offices in Essex and get stuck in behind the scenes. We are also currently looking for volunteer counsellors to help us offer telephone counselling to more people who may need it across the UK.
Whatever you decide to do, we'll be here every step of the way to support you. You can share your skills and develop new ones, gain some experience working with a national charity and we provide you with a full induction and ongoing support.
In the mean time, you can find out more about Volunteers' Week across the country on the NCVO website. If you already support MS-UK, don't forget to download our Twibbon to show the world you are part of #TeamPurple.
Best wishes and happy volunteering!
Sarah Wright, General Manager
Over the past year we have been following the progress of five people affected by multiple sclerosis (MS) and capturing, in their own words, an insight into what it is like to live each day with the condition.
These eye-opening stories were recently published in our ‘A year in the life of…’ booklet, a project designed to explore the real-life experiences of MS through topics such as independence, mental health and physical wellbeing and to show how the funding from the National Lottery Community Fund has had a positive impact on the work of our Josephs Court wellness centre.
To celebrate the publication of this booklet, we were recently visited by Jess Leonard, Funding Officer of the National Lottery Community Fund, who met the incredible people behind the case study over coffee and a slice or two of cake.
Diana Crowe, Head of Services said, ‘It was great for our clients who participated in our case study project to meet Jess.
‘It gave them an opportunity to discuss how much they have enjoyed writing for MS-UK and reflecting on their own experiences.
‘Jess really enjoyed the afternoon meeting some of those who were benefiting from the funding awarded to MS-UK’s Josephs Court.’
From Diana and Dean, and the rest of the MS-UK team, we want to thank Jess for visiting us last week.
MS-UK will be closed on the bank holiday following this weekend, so just to remind you of the times:
Friday 24 May - open from 9am - 5pm
Monday 27 May - closed
Thank you all and do have a lovely bank holiday!
Best wishes, The MS-UK team