MS-UK’s Wellness Centre, Josephs Court works closely with the University of Essex to support occupational therapy students (OTS) by providing role-emerging placements while they train.
Each year the Josephs Court team is invited to speak at a symposium with the new OT recruits about role-emerging placements at its Wellness Centre in Colchester, Essex and increase their knowledge of multiple sclerosis (MS).
Diana Crowe, Head of Services, said: ‘We took the opportunity to promote all of our services, but focused on what we deliver at Josephs Court, such as the exercise equipment and the benefits this brings to clients.’
‘There was good interaction and we were asked about the social activities we provide, so we discussed the MS-UK Social Group in Colchester, which has regular coffee mornings and other events such as bingo!’
‘Due to recent headline news regarding HSTC there was an interest in how this treatment could impact on us as a charity and our clients. Just like everyone else we will have to wait and see how the treatment develops, but we will continue to support people with MS for as long as they need us.’
‘We split into groups, which gave us a chance to speak in more detail with some of the students,’ explains Dean Jeffreys, Centre Manager. ‘The students were interested to know about APS Therapy, how we link up with other services and how politics impacts on our strategy.’
Speakers from St Helena’s Hospice spoke about its gardening project for those at the end of life and Craig, from Pots the Soldier, spoke about his post-traumatic stress diagnosis after leaving the army and how he found a love of pottery thanks to the support of OTs – very inspirational!
‘It was great to see the students so interested in the work MS-UK does and we hope to continue to work with Essex University over the coming years. Who knows one day we may have our own MS-UK Occupational Therapist,’ adds Diana.
Every year we run our annual survey, asking you to tell us a bit about yourself. Last year hundreds of you took part – thank you!
We run this survey every year so that we can make sure we are always providing services that really meet the needs of people affected by multiple sclerosis, and so that we ensure we are reaching as many different people as possible that want information or support.
In the survey we’ll be asking questions all about you – from how old you are to what MS-UK services you may have used in the past. Everything is completely anonymous, and we won’t be asking you for any contact details at all.
Thank you so much for taking part!
Laura May, Marketing Manager
In this guest blog, Jamie Macpherson gives a personal account of how the ‘Overcoming Multiple Sclerosis’ program has helped with his multiple sclerosis (MS) and his life...
My story is an interesting one as both I and my Mother have MS, six years and twenty nine years respectively. My mother is now considered secondary progressive and confined to a wheelchair currently. I, despite been diagnosed with the label MS, consider myself the healthiest I've ever been and intend to be for the rest of my life.
Before the introduction of internet and more recently the findings and practice of George Jelinek there wouldn’t have been much help for my mother as there wasn’t even many options for disease modifying drugs. So this will have led my mother to only be able to try methods such as the oxygen chamber therapy or the will of God.
So as my Mother, Jeanette, slowly declined in health, I for a period of time became her run-around whilst my father Peter worked to keep a roof over our heads. All this time I’m doing this I am smoking, eating poor food, no exercise and unknowingly to me becoming ill with each day of this poor lifestyle whilst thinking ‘I’m wonderful because I’m helping my Mum!’
When I had my first episode of MS the pain was very hard to describe and something I would not like to go through again. Obviously I had all the tests MRI etc. and the confirmation by the neurologist was MS and his words were ‘go away and see how it progresses’ (lovely thank you very much)!
The state of my body at that time, other than having MS, included weighing 22 stone, a BMI of 38, waist size 42 and more importantly really low self-esteem and depressive thoughts daily.
What did I do? Well despite having a loving caring family of partner and two young children 13 and 9, I lost the plot and left home and sat for a time feeling very sorry for myself and my position in life.
Then one day I visited my Mum and she had a magazine delivered called New Pathways, which had a reference to a guy called George Jelinek, who had written a book called ‘Overcoming Multiple Sclerosis’, so I ordered the book and couldn’t believe the similarities that both he and I had had, Mothers with MS, and then sadly for George his mother passed away. Well this book gave me hope, a chance and an opportunity to maybe, just maybe, get out of this position and make something of my life.
I attended the seminar that George and his team held in Brighton in 2013 and was completely amazed at all the people that had been following the seven step program and how well they were doing.
Six years later my life is the best it has been ever. I now weigh 15 stone, my waist size 34, BMI around 18 my thoughts are of ‘what can I do today to help people like me?’How have I got here? Obviously the OMS program is a must and I follow as best I can daily. Other things I have implemented include, acupuncture once every two weeks with a fantastic lady, Gisela Conclaves, in Heywood Rainbow clinic, I only eat foods to my blood group, I take high doses of Vitamin D3 and daily flaxseed oil with Herbalife breakfast nutritional shake. More recently I have been trying the virtually no side-effects drug Low Dose Naltrexone which has been a real help in fighting the dreaded fatigue which I no longer suffer from.
Above all these I tell myself ‘Every day in every way I get fitter and stronger.’
Find out about the Overcoming Multiple Sclerosis program on their website.
Our helpline not only attracts people from the UK, but we also chat with many people from overseas via our live webchat facility. This is great, as it allows those in different time zones to contact us if they need to talk.
Another service that complements this nicely is our telephone interpretation service.
This service is not just available for those contacting us from overseas, but for those based within the UK, whose English is limited.
Whilst using the interpretation service, in order to communicate with clients we use a values led, non-for-profit business. This covers over 100 languages, all interpreters are fully qualified and based in the UK.
All interpreters are experienced in working with sensitive issues and all have Disclosure and Barring Service clearance. This gives another layer of protection to our clients.
So, how does our telephone interpretation service work?
The service is straight forward and simple. Once contact has been made with the MS-UK Helpline, all we need to know is your
We will then make contact with an interpreter who will get back to you as soon as possible. You will then be connected to a three way conversation between yourself, the interpreter and a member of our helpline who will give you the support you need.
As part of Carers Week Mark gives his account of caring for his wife, Portia with multiple sclerosis...
Portia and I met at university, where we were studying architecture and landscape architecture. We were married in 1998 – around the same time Portia was diagnosed with MS.
You can’t anticipate what a progressive condition such as MS will be like. It’s different for everyone. We have had long periods of managing fairly well – including having our three children who are now aged 15, 12 and 10 years old.
There have also been periods of relapse. Day to day you don’t really notice the changes, but you look back over the years and can see how the condition has developed. 2014 was a particularly bad year, Portia spent a lot of time in hospital and we had the shock of finding out she had also developed epilepsy. It was a steep learning curve.
I’m an architect, and while my workplace has been very good at supporting me there have been difficult, uncertain times – especially when I’ve had to have unplanned time off while Portia has been in hospital. You know you’re not the first person to go through this, but it can feel that way.
Last year I set up a Carers’ Network at work which now has 150 members – including people who are caring now or have in the past, as well as people preparing for what could happen in the future. The best thing has been the opportunity to share our experiences and pool our knowledge. There’s always someone you can ask ‘How did you find this?’, ‘What can I do in this situation?’.
Portia and I are a great team, and we’ve always found a way round any challenge we’ve been faced with. Portia loves learning and is currently part way through an Open University course in Psychology and is training as an Art Therapist. MS may make the practicalities more difficult, but it doesn’t stop you living your life.
Celebrate Carers Week
This week is Carers Week. The annual awareness campaign celebrates and recognise the vital contribution made by the UK’s 6.5 million unpaid carers. The aim is to build carer friendly communities, places where carers are supported to look after their loved ones well, while being recognised as individuals with needs of their own.
Carers Week is a time of intensive local activity with thousands of events planned for carers across the UK. If you’re looking after someone, make sure you find out about the help and support available at www.carersuk.org.
For more information on providing care and getting the right support, read our 2-page feature in issue 103 of New Pathways magazine.
In this guest blog Kristy-Jane Martin gives details of a new study looking into the effects of caring for someone with MS.
Research and clinical experience has shown that some carers of people with MS experience low mood and stress. Together, this is referred to as ‘carer strain’. Currently, there is no specific support available for carers in clinical practice. For any specific support to be made available through NHS services, research must show that the support that is provided is beneficial for carers of people with MS, and it should not cost too much. Carer strain and support has also been a topic identified by the MS Society as an important subject to focus on.
Acceptance and Commitment Therapy (ACT) is a talking therapy that has been found to be useful for people in distress. ACT teaches people to respond more effectively to difficult thoughts and feelings, so that they no longer are a barrier to living a full and enjoyable life. In the context of carer strain, ACT offers a range of strategies – including mindfulness techniques – that could help carers to better cope with their caring responsibilities and associated emotional demands. Our team has tested associated self-help versions of ACT on people with MS but not with carers of those with MS.
The study we are proposing will randomly allocate carers who are distressed to one of three groups: one group of carers will receive an ACT self-help book, one group will receive the ACT self-help book alongside telephone support from a trainee clinical psychologist, and a third group will continue with their usual treatment. The aim will be to compare the three groups 3 and 6 months after joining the study to see if there has been any reduction in carer strain.
The outcomes we feel might be of interest to carers are: carer strain, mood, and quality of life. We will also be looking at the cost-effectiveness of the ACT self-help to assess its applicability to the NHS.
The project will be carried out by Kristy-Jane Martin (Trainee Clinical Psychologist) as part of their doctoral training in Clinical Psychology. The project will be supervised by Prof. Roshan das Nair (Clinical Psychologist), Dr Nima Moghaddam (Clinical Psychologist and ACT specialist), and Dr Nikos Evangelou (MS Neurologist).
For more information please contact Kristy-Jane Martin at email@example.com
We wanted to let you know about our latest survey…we would like to know your thoughts about our Helpline opening hours.
Currently the MS-UK Helpline is open Monday to Friday 9am to 5pm and is available via the freephone telephone number (0800 783 0518), live web chat or email.
The Helpline is staffed by trained advisors (that’s us!) to offer all the information you may need to make your own decisions.
We are reviewing our opening hours and exploring whether there is demand for us to extend those hours to provide a service through existing and maybe new channels.
Please take the time to complete our survey to help us to make plans for the future.
Thank you so much for helping us with this research, your opinion will help us shape this service for the future!
Kim, Ryan and Laura
The MS-UK Helpline team
Chris Bradshaw’s Mother in law has come up with a very creative way to fundraise for his Virgin Money London Marathon run for MS-UK – quilting! Find out more in the interview with both Chris and Rosemarie…
So Chris, why are you running the marathon for MS?
My father-in law has had MS since his mid 20’s and ever since I’ve known him it’s been remarkable how he still continues to enjoy life through his high-tech wheel chair and still manages to get to occasional gigs. My mother in-law is also a hero as she is his fulltime carer and is amazing how she has the energy to do it continually and still keeps a big smile on her face! Both of these outlooks combined with supporting MS carers is why the least I can do is run the Virgin Money London Marathon.
How has training been going and what have you found the hardest thing?
Training going = Strong! Hardest thing = Time! (lack of)
Hi Rosemarie. How long have you been quilting for?
Coming up to almost 50 years now!
Why did you take it up?
Since having children I have always done some sort of sewing, be it clothes for the little one or making fancy dress costumes or dance costumes. I quilted on and off during that time but stopped when my husband’s condition deteriorated, so I became his full time carer. Then four years ago I myself became ill and spent many hours having treatment. As you can imagine I was used to a very busy life so having to sit still for several hours at a time was very difficult. My daughter knowing how I felt bought some material and said 'make me a quilt' which fuelled a passion for hand piecing and quilting. My husband who is totally disabled goes to bed around five in the afternoon until the following morning. Quilting allows me to enjoy the evening sitting with my husband whilst being enjoying my hobby.
What made you want to support Chris' marathon run in such an inventive way?
In the past I have often been asked by friends if I would sell them my quilts but my pleasure is to give them as gifts. As there appeared to be an interest in them we thought that it would be a really nice and original way to help Chris in his fundraising and at the same time allow people to acquire something nice for their donation.
What does supporting MS-UK mean to you?
The work MS-UK do in raising awareness and providing support for those with this terrible disease is so very important, so raising money is a way of saying thank you.
What is the best thing about being able to create beautiful crafts and raise money at the same time?
Doing exactly that! Doing something I enjoy whilst helping make a difference for an important cause.
Finally Chris, are you looking forward to the big day?
Absolutely! Everyone has told me how the crowds are incredible and they carry you through the pain of the 26.2 miles!
You can view Rosemarie’s quilts at https://www.etsy.com/uk/shop/SnuggleforMS?ref=hdr_shop_menu
Chris’ JustGiving page is at https://www.justgiving.com/fundraising/Chris-Bradshaw-Marathon-2017
MS-UK will be closed over this long weekend for bank holidays, so just to remind you of the times:
Thursday 13 April - open until 5pm
Friday 14 April - closed
Monday 17 April - closed
Tuesday 18 April - open from 9am
Thank you all and do have a lovely Easter if you are celebrating!
Best wishes, The MS-UK team
In 2016, Simon Gauge ran the Virgin Money London Marathon for MS-UK.
But he really ran it for his brother, Phil.
Phil passed away just last month. In this blog, Simon remembers his brother’s courage and quick wit, and shares his hopes for the future…
‘I contacted MS-UK to let them know that unfortunately my brother Phil, who has bravely fought MS for the past 13 years, passed away in the early hours of Sunday morning aged 43.’
Raising a whopping £33,000 for the charity by undertaking the marathon last year, Simon was inspired to take on the challenge by the bravery and courage of his brother who lived with primary progressive multiple sclerosis.
‘Phil was barely able to speak but he never lost his sense of humour.
He was my inspiration’
‘I took on the marathon because I wanted to raise money to provide help and support for people with MS whose family may not have the means to assist them in the battles they face on a daily basis.’
Simon and Phil’s parents dedicated their lives to supporting Phil to remain independent. ‘Phil was very lucky…he died in his own adapted bungalow, with family and a fantastic care team around him (he had 24 hour care). He had the worst form of the disease but I can honestly say he was happy right up to the very end.’
‘Phil always said he did not suffer from MS but had to learn how to live his life as full as possible with his MS.’
Looking to the future, Simon and his family are focusing on remembering Phil for the positive, hopeful man he was. They would like to ensure his legacy lives on.
‘I contacted MS-UK to let them know that any donations will be going to the charity. Anyone can get multiple sclerosis and I want charities such as MS-UK to be there in the future to give the information and support needed to anyone affected.’
Simon is also planning to sell Phil’s fully adapted bungalow to someone else who may benefit from its many adaptations.
Simon says, ‘It is a fully adapted disabled bungalow with a wet room and separate bedroom for carers to stay in. Rather than sell it to anybody we would like to sell it to somebody that it could benefit from it and enable that person to continue to live life independently.’
About the bungalow
137 Holme Court Avenue, Biggleswade, Beds SG18 8PA
Originally the Bungalow was a two bedroom Bungalow but has been fully reconfigured to cater for a disabled person requiring the use of a wheelchair and requiring a 24 hour care package.
The Bungalow has small gardens to the front and rear. You enter via the front door (set up so it can be remotely opened via a Possom device or similar) into a spacious entrance hall. To the left is a lean to overlooking the rear garden. To the right is a wet room with a sliding door for easy wheelchair access. It is large enough to fit a wheelchair and hoist. Straight ahead is a double bedroom and via the hallway you enter the lounge that has a fully equipped kitchen coming off of it and a storage room.
Value around £270,000
MS-UK sends our thoughts and wishes to Simon and his family, and we would like to thank him for sharing such as positive message at this time.