In the know

There is a whole load of information and others sources of support out there to help make life with MS a bit easier.  

I live in Berkshire so the references to services/support reflect this.  Search online for your local equivalents- for example, there are MS Therapy Centres across the UK although the services & therapies offered vary.

Berkshire MS Therapy Centre (BMSTC) – Based off the Oxford Road in Reading, they have access to a number of contacts who offer help, such as IT support and legal advice.  They offer a range of therapies – find out more at http://www.bmstc.org/.  The MS nurses have a monthly clinic at the centre, contact them direct for an appointment on 0118 322 5369.

CommuniCare – www.communicare.org.uk/ is an advice and support centre based in the Community of East Reading. The service is confidential and free.  They provide all sorts of practical help, for example "They helped me, and other people with MS I know, complete some of the forms we need to submit like PIP, Blue Parking Badge, ESA and others. They understand ‘the system’ so give good information and guidance".

Communications services for the disabled - Ofcom requires communications providers to provide a range of services designed to benefit disabled people (www.ofcom.org.uk/phones-telecoms-and-internet/advice-for-consumers/accessibility/services-for-disabled-people), including:

  • access to emergency SMS (mobile only) by using the emergency call numbers “112” and “999” at no charge for hearing or speech impaired people who need to contact the emergency services. To use this service, text ‘register’ to 999 or 112.  Registration only takes around a minute, so it is possible to register in an emergency, but advance registration is strongly recommended. For more information visit RelayUK
  • access to free directory enquiries with through-connection of calls for people who are unable to use a printed directory because of a disability
  • priority fault repair (for landline and broadband but not mobile) for any disabled person who has a genuine need for an urgent repair. Charges for this must not exceed the provider’s standard charge for a fault repair service
  • third-party bill management for any disabled customer, enabling a nominated friend or relative to act on their behalf in relation to bill management.

An example is my ISP, Plusnet.  Now I am registered, their system has recorded that they shouldn't ask me to do manual checks, that engineers know to wait longer at the door etc.  As my landline provider, they are also aware that I am dependent on emergency pendant service.  Check what your suppliers offer to make sure you get the best service.

Courses - Have you looked at the New Directions adult leaning offering lately? There are day sessions, daytime and evening courses too. Find out more by calling 0345 842 0012or go online www.newdirectionsreading.ac.uk.  Bracknell & Wokingham college run a range of community daytime and evening courses.  Perhaps less well known is the WEA (Worker’s Educational Association) – http://www.wea.org.uk/. They use a number of sites across our patch for a wide range of study days and courses.

Disability News service - DNS is run by John Pring, a disabled journalist who has been reporting on disability issues for years.  Launched in April 2009, DNA aims to address the absence of in-depth reporting in both the specialist and mainstream media on issues that affect the lives of disabled people.  The news service focuses on issues such as discrimination equality, independent living, benefits, poverty, activism and campaigning and human rights, but also covers employment, transport, education, housing, crime, and arts, culture and sport.  Find out more and subscribe here www.disabilitynewsservice.com/.

Disease modifying drugs and other meds. - see this tab

Equality Advisory & Support Service offer free, impartial information if you think you have been discriminated against.

Information sources - a load of information is available online, I suggest you stick to the charity sites for accuracy:

IT assistance – a digital world accessible for all is the aim of Ability Net.  Brought together by Good Things Foundation, the Online Centres Network is made up of thousands of grassroots organisations, all working to tackle digital and social exclusion by providing people with the skills and confidence they need to access digital technology. 

Life Hacks - What do you do to help you live with MS?  I might be something you heard about, or something you've learned to do or use that makes life just that bit easier.  We would love to hear your ideas so they can be shared with the MSquared community.  My tip involves a yoga strap - a length of webbing - I keep wrapped around the gear stick in my car.  Invaluable for 'hoiking' my leg in or out the car when fatigue makes it tricky.  You?  Go on, have a think - I bet there is something you now do that might be useful for others - drop me a line.  Here's ideas from another MSer.

MS Helpline - The MS Society MS Helpline gives emotional support and information to anyone living with MS, Monday to Friday, 9am to 7pm except bank holidays. Freephone: 0808 800 8000.  It’s free to call from landlines and mobiles within the UK. What you discuss is confidential and when you call, it won’t show on your phone bill.  Send a direct private message on Facebook messenger www.facebook.com/MSSociety/ between 9am and 5pm Monday to Friday. Or use their confidential email service helpline@mssociety.org.uk. They'll get back to you within five working days.

MS Register - The MS Register is a ground-breaking study designed to increase our understanding of living with MS in the UK.  Take a look to see how you can participate and contribute.

MS Society membership - a wealth of information, support etc. - find out more.

MS Trust podcasts - bring together a range of voices from the MS community to cover all aspects of life with multiple sclerosis. Featuring a combination of expert advice and real life experiences from people with MS, episodes provide an in-depth insight into the impact MS symptoms can have and how they can be most successfully managed.  Podcasts from the MS Trust | MS Trust

MSquared – A monthly newsletter gives all the information sent out by email or in the post.  Personally, I found this group a valuable source of information about living with MS and recommend all to join in.  Its free to join so just use the contact information to get involved.  Email msquared_rwd@yahoo.co.uk to be added to their email distribution, find us on Facebook here @MsquaredRWD on Facebook.  You can sign up to receive the newsletter by email even if out of the catchment.  Social events have been om hold since Covid byt may return in 2023.

Newly diagnosed - Being newly or recently diagnosed with MS (multiple sclerosis) can feel overwhelming. The first thing to remember is there's a whole community of people here to help. 

Newly Diagnosed Day (was Getting to Grips) – a programme of information and discussion sessions arranged by the MS Society aimed at the newly diagnosed and their friend/family members.  Talk to your MS nurse to find out how to register an interest in attending. The day session resumes in Reading in June 2023.

Organ donation - Imperial College MS and Parkinsons Tissue Bank - if intertested in assisting future research in to MS you can register with this tissue bank.  It negates the current opt-out organ donation scheme.

Shift.MS is the social network and community for people with multiple sclerosis. Founded by MSers, for MSers, the charity supports recently diagnosed people across the world as they make sense of MS.   It’s independent and it’s free.

Social network for newly diagnosed - Shift.ms is the social network for people with multiple sclerosis. Founded by MSers, for MSers, the charity supports many thousands of recently diagnosed people across the world as they make sense of MS. It’s independent and it’s free.  https://shift.ms/.

Stepping Forward can also help you to access services and/or benefits, especially when there is usually a form to complete.  Anyone applying for PIP (personal independence payment) will know the daunting form to be completed. And, of course, that assumes you know what is available in the first place.  Get it right from the outset to minimise delays by seeking assistance from folk who have experience.  Contact Stepping Forward to support you with the first steps.

Torch aims to be a network of local hubs to provide help and hope to people in need, by churches working together in unity, and in partnership with the charities, public and private sectors.”  Torch provides a completely free service to everyone. All volunteers are DBS cleared and, where possible, come from the local community near the client. Self or agency referrals to Torch can be made by phone 01183800260, through their website or help@torch.org.uk.

Unsolicited communications - Reduce junk mail & unwelcome, nuisance calls by registering with the mail and the telephone preference services.  It'll take a little time for them to kick in but it’s worth the wait.  http://www.tpsonline.org.uk/tps/index.html and http://www.mpsonline.org.uk/mpsr/.  This should stop items coming in your name but to stop the generic ‘To the Householder’ type junk mail, you can email Royal Mail to have your property taken off the mailing list.   To do this email optout@royalmail.com – they will send a form by return for you to complete & get the junk stopped.

Volunteer with the MS Society & Berkshire MS Therapy Centre - charities rely on volunteers to deliver their services.  You could help with collections, with running oxygen therapy sessions and more - check the carity websites for details

© Copyright Living with MS