HR Specialist and MSer, Rebecca Armstrong offers her advice...
Rebecca Armstrong has a background in HR and Leadership Development at a Senior Level. She was diagnosed with multiple sclerosis (MS) in 2013 and she now focuses on helping organisations embrace Equality and Diversity in their management practice. She established the Facebook group MS & Work in order to use her knowledge to support people with MS facing challenges in the workplace. Here are her top tips for those who are feeling discriminated against.
You can read more advice from Rebecca regarding disability and work in issue 106 of New Pathways magazine. Subscribe today and get your copy. Contact the MS-UK Helpline for further support or join Rebecca’s MS & Work Facebook group to continue the conversation.
Tomorrow is the last chance to take our survey all about the MS-UK Helpline, and let us know your opinions if you have used the helpline at all in 2017.
We would like to know why you chose the MS-UK Helpline, whether or not you found the information and support from our team useful and your opinions about our opening hours and accessibility.
This survey is for people who have used the MS-UK Helpline this year (2017). By completing this survey, you are helping us to improve the MS-UK Helpline in the future, so your feedback is invaluable!
As a thank you for sharing your thoughts, one lucky person will be selected at random to win a £50 Love2Shop voucher!
The closing date for this survey is tomorrow (09 August 2017), so don’t delay!
Thank you – and good luck!
Diana Baxter, Head of Services
Last month, I was one of the guest speakers at the Patient Information Forum conference talking about our experiences of Involving Users in Developing Health Information. Professor Theo Raynor, University of Leeds and Luto Research, set the context for the day and his presentation addressed how involving users is not just the right thing to do – it makes a real difference; and how ‘expert’ patients and ‘real’ patients both have a role to play in developing good information.
Trishna Bharadia, who was diagnosed with multiple sclerosis in 2008 and has since become an award-winning advocate, talked about her experiences of accessing health information and being involved in the development of health information from a patient’s perspective. In particular she gave an example of a case study on developing a Living Well With MS course for Sue Ryder in Nettlebed.
I spoke about how MS-UK uses a number of methods to engage with our clients. For example, our Virtual Insight Panel (VIP) helps us to review our Choices leaflets and our clients also provide us with real life quotes to bring these resources alive. We also consult with our VIP’s on other organisational decisions to ensure that we are listening to the voices of those that are affected by MS and using them to inform our work.
Earlier this year we also set up a Steering Group for our wellness centre, Josephs Court in Colchester, Essex. This group is made up of seven clients who volunteer their time every other month to meet us. These meetings enable us to consult with them about our plans, listen to their ideas and those of the clients of Joseph Court who they represent.
Overall, the key message I came away with from the conference with was that MS-UK needs to introduce a face to face user testing group to further improve the way we develop and produce our Choices leaflets. I am certainly excited about how we can incorporate this into our processes and continue to demonstrate our commitment to our mission and values which include providing high-quality, accessible and relevant information.
If you would like to join our VIP, register your interest at www.ms-uk.org/vip.
Diana Baxter, Head of Services
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
We have been using an online live chat system for some time now and it has shown to be popular. Certainly for those who may not feel in a position to pick up the telephone for whatever reason, and for those who would like a more instant response than email. It also means we have been able to chat to people abroad too, when they may have found it difficult to find support.
Our Digital Officer, John, has now developed a nice little function whereby a pop up appears on every page of our website to show people that the live chat facility is available. This has certainly increased the amount of web chats we have received which is great as it has meant we have reached out to more people affected by MS.
If we are engaged - either chatting to someone already, or perhaps on the telephone - then a message can be left via email and we will get back to you as soon as we can.
We look forward to hearing from you,
Laura, Kim and Ryan
The MS-UK Helpline team
Hi I’m Sarah-Jane and I’m the new editor of MS-UK’s New Pathways magazine. I’ve been here a month now and already I’m getting to know the readers of New Pathways rather well, it’s great to see just how much you value the magazine.
I’m pleased to tell you that issue 101 of New Pathways is out now!
Catch up on the latest MS news and enjoy the first in a new series of columns from MS nurse, Miranda Olding, as she discusses how you can take back control from anxiety and treat panic attacks the holistic way.
Regular New Pathways writer, Ian Cook investigates why researchers are using crowdfunding sites to fund research and Charlie Gee looks back at the pictures of his life and a time when he really did push his limits.
In addition, Amy Woolf, CEO of MS-UK discusses the charity’s new counselling service and asks for feedback on what you need from us. We would be really grateful if you could spare a little time to answer our short survey.
Also, do not miss the latest advancements in wheelchair technology, a look back at Biotin, Trishna Bharadia’s review of HackAMSterdam, your real life stories and some beautiful clothing designs from ex White Stuff buyer and founder of The Able Label, Katie Ellis.
New Pathways magazine is available in a variety of additional formats including digital, plain text and audio. Simply click here to subscribe, or alternately you can call 01206 226 500.
In addition, I want to hear from you! Whether you’re fascinated by stem cells, need to know about the latest drugs, need advice on how to be mindful or meditation - whatever your interests, I want to hear about them. Please email me at email@example.com with your suggestions, or write to me at New Pathways, MS-UK, Unsworth House, Hythe Quay, Colchester, Essex CO2 8JF.
I look forward to hearing from you!
A disabled man who recently won a Supreme Court case after a dispute with a woman with a buggy over wheelchair space on a bus has been getting your support online.
The verdict now means that bus drivers will have to do more to accommodate wheelchair users.
Doug Paulley bought his case to court after he was refused entry to a FirstGroup bus in 2012, when a mother with a pushchair refused to move.
Followers of MS-UK followed the story via social media and acknowledged the victory with more than 50 people liking the story online.
Patricia Gachagan commented: “[This was] absolutely the right decision!”
Another follower said: “Well done that man.”
Expressing her frustration at the story, Kim Strydom, said: “Since when did spawning give people such a sense of entitlement? Speaking as a disabled mother.”
The court said FirstGroup should consider further steps to persuade non-wheelchair users to move, without making it a legal duty to move them.
It ruled that FirstGroup’s policy of requiring a driver to simply request a non-wheelchair user to vacate without taking any further steps was unjustified.
However, the court did not make it a legal requirement for bus companies to force non-wheelchair passengers to move from the space.
We welcome your comments on this subject...
Phil Hawkridge from Brightlingsea, Essex, was diagnosed with relapsing remitting multiple sclerosis in 1992. In this blog, his wife Rachel talks about getting support from the MS-UK Helpline with PIP forms…
‘My husband attends Josephs Court, so we knew that we would easily get help from the MS-UK Helpline,’ said Rachel, who approached the Helpline team to ask about completing the forms for Personal Independence Payment (PIP). PIP replaced Disability Living Allowance (DLA) for people with a long-term health condition or disability aged 16 to 64. The rate of support you receive depends on how your condition affects you, not the condition itself. Anyone applying for PIP will need an assessment to work out the level of help required. ‘I have to do all the paperwork, and the PIP form was very daunting,’ said Rachel. Phil’s diagnosis has changed since 1992, and he now lives with secondary progressive MS. Rachel is Phil’s carer now.
‘Ryan never rushed us and was hugely supportive. It was invaluable help.’
Taking time to discuss everything with Ryan from the MS-UK Helpline team meant that Rachel could get the best possible outcome for her husband Phil. Rachel added, ‘my husband was awarded the enhanced rate of PIP in both care and mobility, thanks entirely to Ryan.’
If PIP affects you and you need support, we want you to know that the Helpline team is here if you need us. The Helpline team all have benefits training and are able to give quality information and support to people contacting our service. We can spend time and support you to understand the processes involved and to be able to articulate your needs to the Department for Work and Pensions (DWP) in a way that we hope will help you gain the right level of benefits for your personal circumstances. Getting in touch You can call the MS-UK Helpline for free on 0800 783 0518 during weekdays, between 9am and 5pm. Visit our live web chat page on the MS-UK website to speak to us online. Email us at firstname.lastname@example.org.
Please note that MS-UK cannot influence a decision by the DWP, and is able only to offer information and support.
NICE are reviewing the way they involve lay people in developing their guidance and standards. In this context, lay people are people who are not health or social care professionals.
NICE are carrying out a consultation on improving how patients and the public can help develop NICE guidance and standards. NICE want to hear your views on their proposed new principles and ways of working.
How to have your say
The consultation closes at 5pm on 28 February 2017.
Following the consultation, NICE will analyse all the comments and respond to them by theme. NICE will publish their final proposals on their website following the consultation.
My name is Diana, and I am new to MS-UK! I have recently joined as Head of Services, and this is my first blog, so I hope you enjoy it…
This week I went to the Headway Suffolk Neuro Conference to hear some outstanding speakers including Professor Stephen Hawking. Despite initial reports that he would not make it due to ill health he made a great effort to attend the event to the delight of everyone there. There was a real sense of anticipation as we heard that the Professor was in the building.
Professor Stephen Hawking takes the stage
This man is a true inspiration, at the age of 75 (on Monday 10 October) he is still working full time whilst living with motor neurone disease. Professor Hawking spoke of his journey from initial testing to diagnosis and the challenges that he has had to face since. He continues to defy medics and despite being told in 1962 that he would not survive two years he considers himself lucky and concentrates on the things he can do rather than things he can’t. He feels lucky to have had his three children and considers them to be his greatest achievement. What a great sense of humour he has too!
To see for yourself what he had to say visit the Headway Suffolk website. His next ambition is to travel in space with Richard Branson’s project.
Professor Trevor Powell, a Consultant Clinical Neuropsychologist from Berkshire Healthcare NHS Trust, spoke about post traumatic brain regrowth which was really interesting and something I hadn’t heard of before. Understanding how brain trauma effects individuals differently and how people react and cope with this in different ways and how some can draw strength from it.
Dr Chowdhury from Ipswich Hospital spoke of developments in the world of stroke and the passion and commitment to enable patients to get all possible treatments. He clearly explained the importance of early referral to specialist stroke units to get the best possible outcomes.
It was good to hear about the work that Headway Suffolk do too – particularly the Brainy Dogs – and their desire to fundraise for a housing project in order to respond to the needs of their service users.
It was a great day out that was attended by over 700 people, that certainly caused the staff at BT Adasatral Park a logistical nightmare with parking, security and catering and caused tailbacks on the A14. The opportunity to see Professor Hawking – quite possibly the most intelligent man on the planet – certainly drew the crowds!
It was a great event, and one I really enjoyed attending,
Head of Services