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
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
On Sunday March 23, more than four thousand people took to the streets of Colchester to be part of the towns’ biggest community sporting event the year, the Colchester Half Marathon.
The event is organised by a group of volunteers from Colchester Colne Round Table who work tirelessly throughout the year to stage this fantastic event. All the proceeds from the race are shared between local charities.
This year MS-UK were lucky enough to have been chosen as the main charity beneficiary for the event. Brain injury charity Headway Essex were the other charity partners. MS-UK worked closely with the organisers and recruited a team of over 100 volunteers and 50 runners to support the event.
Taking on a half marathon is brave enough, but not enough of a challenge for MS-UK’s long term supporter Clare Thompson and her running buddy Dave, who completed the course wearing an MS-UK branded purple tyre!
It was a great day, everyone had loads of fun and the Great British weather was exceptionally kind to us too.
This week MS-UK received a very handsome donation of £48,750 from the event. Jill Purcell, MS-UK’s Fundraising Manager said 'We are delighted to receive such a fantastic sum of money raised from the event. The amount is equivalent to MS-UK being able to provide specialised supervised exercise sessions to more than 50 clients for a whole year at Josephs Court, our wellness centre in Colchester. Thank you to the Colchester Half Marathon committee, and all runners and volunteers for their generous support. It is always a great event which significantly benefits the local community too'.
Every penny raised from the Colchester Half Marathon helps MS-UK support even more people affected by multiple sclerosis (MS), by raising awareness of the condition and offering services like our helpline, MS-UK Counselling and New Pathways magazine.
Thank you so much to all involved and our amazing #TeamPurple runners!
I wanted to invite you to complete our survey which launched today about loneliness and isolation.
Last year we consulted with the MS community to inform the development of our new strategy. The most talked about gap for people affected by multiple sclerosis (MS) across the UK was appropriate support to tackle loneliness and isolation. We were told that there was simply not enough support to overcome the barriers contributing toward their isolation and not enough available to help them feel a part of something, connected to the world and less lonely.
We are now beginning to look at this area and we would like to understand this issue a bit more. The voices of people affected by multiple sclerosis inform all our work and this insight is incredibly valuable as it brings us perspectives that no one else can give. I hope you will take five minutes to complete this short survey and help us stay on course to provide people affected by MS not only with what they want from us, but crucially, how they want it.
The topics of loneliness and isolation can be difficult to deal with at times, so if you would like any support at all please get in touch with our helpline. You can email the helpline, call us on 0800 783 0518 or connect with us online.
Thank you so much for your contribution,
Head of Services
I wanted to let you know about a new volunteering opportunity here at MS-UK.
We are looking for Volunteer Counsellors to join our team to provide telephone counselling sessions to those affected by multiple sclerosis. If you have experience of delivering person centred and telephone counselling please get in touch. The role is based at our office in Colchester and full training will be provided on 28 and 29 May 2019.
You can find out all about this opportunity on our volunteering web page, and the closing date is 10 May.
MS-UK Counselling is the only service of its kind available to people diagnosed with multiple sclerosis in the UK, so you will be joining a dedicated team that really makes a difference.
'Before I was diagnosed with multiple sclerosis (MS), I was very keen on sport and was always very active participating in sports teams, such as when I joined Colchester Ladies Hockey Club and later on, a Colchester badminton team. I also started playing golf in my mid-thirties and was a very active gardener as I got older.
'However, pre-diagnosis, I had an unexplained ‘attack’ which left me very fatigued with a tendency to quickly hit a ‘fatigue wall’ during any physical exercise, even just walking to the shop. This meant that my very active lifestyle came to something of an abrupt end, even though my mind still thought of myself as fit and active. Suddenly, I just couldn’t do the things that I used to do. Despite my mind telling my legs to run, jump or whatever, my muscles just weren’t able to comply. The messages from my brain just weren’t getting through. It was a very scary time and I began to get scared of trying to carry on doing any physical activity.
'I remember one time when I was still just able to trot a bit and I was walking across a field to our campervan, and it began to rain. I started to ‘run’ towards the van for shelter and took a big tumble which twisted my ankle, wrenched my back and gave me big bruises and muddy clothes. Luckily, I’d fallen on grass but as I’d not fallen over since I was a toddler according to my Mum, it gave me a big shock! This episode really dented my confidence and my physical activity reduced considerably after that.
'Once I received my MS diagnosis, I was overwhelmed by so many fears, worries and confusion. I found it difficult to take in and understand all the advice and information I was given. I didn’t ask about physical exercise or about many other things related to MS because I didn’t know enough to know what to ask, my mind was in a spin. All I remember was being told that ‘overdoing it’ could bring on a relapse, and to rest and pace myself or I would ‘pay for it’. This made me very worried about doing any physical exercise in case it brought on a relapse.
'After my diagnosis, I now exercise twice a week at MS-UK’s wellness centre Josephs Court on a Therabike and on the Vibeplate. I joined Josephs Court two years ago and have been aiming to strengthen my arm and leg muscles to help compensate for my severe fatigue and to reduce the risk of falls. I’m really pleased with my progress and I’m now able to do a lot more than I was able to do before I hit my ‘fatigue wall’. I’ve also learned how to pace myself better through the excellent coaching at Josephs Court and the MS-UK Mindfulness training.
'I now appreciate doing the exercise as it enables me to garden regularly, as long as I’m strict with my pacing! Now I have four grandchildren under the age of four and another on the way, and I have begun to feel that I would be missing out on enjoying family time together, but my increasing fitness and activity has meant that while I still find it very tiring to play with the three year olds, alongside looking after the one year old twins, I’ve been able to find ways to cope with them all and enjoy them without exhausting myself.
'I also have advice to those who are affected by MS and are nervous about exercising. I would say that I feel that good information is the key to living positively with MS. When I was first diagnosed 13 years ago, I didn’t ask questions. I was in denial for about 10 years before I finally plucked up the courage to go to Josephs Court. By then my fitness and strength had deteriorated massively impacting negatively on my general health and wellbeing, so I wish I had been able to ask the questions I needed to earlier in my diagnosis. I have found in the last two years that mental and physical wellbeing, with keeping yourself as fit and healthy as possible, are so important if you’re living with MS, or a similar chronic condition. When I started exercising at Josephs Court, I hit my fatigue wall almost immediately but with the help and encouragement of my Wellness Coach, Jay, I was able to slowly improve.
'Another benefit that I found with exercising is the social part of it. I loved meeting other clients, something I was very nervous about to start with. But chatting with other clients, comparing notes and encouraging others has been a lovely but unexpected bonus, and has really helped me look much more positively on myself with MS. Also, joining the social group and attending social events such as the regular coffee mornings, has been a very enjoyable revelation for me, and helps me to think so much more positively about MS.
'Finally, I find the exercising therapeutic, I feel really well after an exercise session – I am more relaxed and subsequently sleep better; and by the next morning my back and leg pain and spasticity are very much reduced. It improves my strength and stamina and increases my sense of wellbeing. Now, I can also enjoy time with my family and friends without constantly feeling exhausted. “I don’t feel ‘ill’ anymore!"'
'I was diagnosed with MS in the summer of 2007 and I quickly tried to find out more about it and what I could do. Of the various organisations offering advice, it was MS-UK (or MSRC as it was at the time) that I found most helpful and supportive. The pragmatic and un-blinkered information, the positive attitude of taking control of your own situation helped me through those first difficult few months, and that idea of taking control of your own health is still very much with me.
'Fortunately I then got the chance to join the Board of Trustees at MS-UK and it gave me a chance to use the skills I had developed in my management consulting career for an organisation that really was making a difference to people’s lives.
'Before I was diagnosed I was very physically active, despite a demanding job that took me to many places around the world. The mountains and mountaineering was my real passion, and as well as rock and ice climbing I ran and cycled. Ironically it was a friend seeing me stagger back from a day’s rock climbing that made me go to the doctor and started the process that led to my diagnosis.
'I have primary progressive MS and immediately after diagnosis my physical symptoms were pretty minor. But as my mobility worsened I couldn’t climb anymore, I kept falling over when running because of my foot drop, and tunnel vision when tired made road cycling too dangerous. Climbing was a big part of my life and not being able to do this felt like a huge loss to me.
'So now 12 years after diagnosis with PPMS I do what I can when it comes to exercise and it’s still a big part of my life. I can’t run at all or walk far, so I have a rowing machine for cardiovascular exercise. I used to have a rowing club nearby that offered assisted rowing which was wonderful. I have a home gym where I can do resistance and strength work and have joined The MS Gym.
'I have seen the benefits of exercising personally and am certain it has allowed me to recover some lost ability. For a while my foot drop was pretty bad - all my right shoes had the familiar tell-tale scuff marks around the toe. But amazingly I found that by working on my right foot and leg I managed to nearly get rid of the foot drop – so now it’s only when I’m really tired that I have a problem. This helped convince me that although I might not be able to recover all the function I’ve lost, I may be able recover some function and must do what I can to maximise what I have.
'I also have some advice to people affected by MS who are nervous about exercising. Exercise will not make your MS worse. Even if you feel exhausted or can’t even move immediately after exercising, you will recover. And it is fine to exercise to ‘failure’ and push your limits – just make sure you’re safe, be aware of form, and have time to recover. There are lots of stories from those with MS that have some functional recovery by exercising, including at basic levels of movement. Also brain loss as we age is much faster in those with MS and exercise slows this loss. However, it can be hard, especially with the fatigue and mobility issues. There is lots of help out there to start you on your exercising journey. Neuro physiotherapists can be incredibly helpful and your MS nurse or consultant might be able to refer you. Many gyms offer advice and training programmes, and there are assisted activities all over the UK. MS-UK and the MS Trust have general advice and more details on exercise programs.
'I also found that exercising with MS requires a huge amount of concentration and can be very tiring. It’s not just a case of “use it or lose it” because form is really important. When I exercise I’m also trying to create new neural pathways to overcome functional loss, so learning and practicing the right way to move is vital.
'Finally, I feel that exercising is therapeutic and I know that I have recovered some lost function through exercising. I’m convinced that if I didn’t exercise, I would have lost more function and exercise has helped me alter the trajectory of the condition. But I just enjoy doing it and feel so much better - even if I can’t move a step immediately afterwards!'
I have been living with multiple sclerosis (MS) for thirty-five years. In 2014 I noticed that walking was becoming more difficult and my MS nurse recommended that I contacted Josephs Court, MS-UK’s wellness centre in Colchester, Essex. I attended twice a week to exercise and became a founding member of their Steering Group. Before I was diagnosed with MS, I exercised every weekday walking for 10-15 minutes to the office where I worked in London. At lunchtime I would occasionally go for a 30 minute walk if the weather was kind, and this felt like it was a sufficient form of exercise. However I was unfortunately diagnosed with MS, but nevertheless I continued exercising in the same way for another 13 years until I eventually changed jobs in 1996. By then I commuted to Basildon by car – therefore my exercise regime came to an end.
But now, I visit Josephs Court two mornings a week, for 2-3 hours each time, and use most of the equipment available. I’ve also increased my exercise since the arrival of the latest university students, as one of them has given me some rigorous exercises using the parallel bars.
Now I feel that doing gentle exercise gives me a feeling of “getting one over on my MS” – it isn’t going to stop me from doing something that I enjoy, and there is a social aspect too. We are all suffering with the same disease label yet we don’t talk about it, we just enjoy one another’s company. The social aspect means I now have someone else to talk to, and shows that I needed something to relieve the boredom of not working, as I spent three years applying for jobs with no luck.
Finally, I thoroughly enjoying working with the student physiotherapist Becca, as she has brought new ways of exercising to me. I also find volunteering for MS-UK therapeutic – it is another reason for existing and gives me purpose.
'In 2016, I was diagnosed with progressive multiple sclerosis (MS) and decided to find out more about MS-UK’s wellness centre, Josephs Court, especially when it really began to affect my balance. I visited weekly and have found the welcoming atmosphere really helpful to me, especially with things such as discussing treatments, and getting ideas and tips for coping.
'Before my diagnosis, I played table tennis to county level as an under 17 and took qualifications to become a swimming teacher. In my youth, I even became a lifeguard with the Guildford Lifeguards. Many years later I joined a gym with my middle daughter Naomi, and we used to go several times a week.
'Alongside this, we also used to cycle to the school I was teaching in and where Naomi was also a teaching assistant. It really was downhill all the way to school, but uphill all the way back. Naomi was able to cycle all the way home, but I had to walk and push my bike for some of the way. Then in 2007, I moved to Great Totham so cycling to work was no longer an option, just an 80 mile round trip to school and back.
'After diagnosis however, my exercise regime was affected, and I didn’t think that exercise would work for me as it used to. My balance was going and I could no longer ride my bike as a result. I even tried stabilisers, but I continued falling off. Subsequently, I started going to Josephs Court and at first, I couldn’t really see the point of it. I could still walk even though my balance was shaky. However, I kept going and then soon realised just how much I needed what Josephs Court could offer and help me with.
'Following this, I ordered an adult tricycle, and was amazed when I was able to get on and ride it straight away, albeit not very far to begin with. But now two and a half years later, I’m able to ride 4.5 miles most days around my home village of Roxwell. I sometimes book myself in for a six week course of hydrotherapy. I think the feeling of being able to walk across the pool with no sticks or rollator is amazing.
'Because of what services there are for those diagnosed with MS, I can’t value exercise highly enough. I have always been competitive, so Josephs Court and tricycling gave me this challenge.'