Open Door: August 2014
A free, quarterly newsletter for people with multiple sclerosis, their family and friends and supporters of the MS Trust.
Every issue we report on our work, aiming to make life better for everyone affected by MS, and suggest ways you could get involved.
We also round-up the most relevant MS news and research projects; share the real-life stories of people living with MS; and introduce advice from healthcare professionals that could make a practical difference to you today.
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Read the latest issue of Open Door exactly as in appears in print:
Latest news from the MS Trust including reports on:
Drugs for relapsing remitting MS
- Alemtuzmab (Lemtrada) - NICE confirms approval in final guidance
- Dimethyl fumarate (BG-12, Tecfidera) - NICE says yes in draft final guidance
- European drug licencing - pegylated interferon recommended, laquinimod refused
In April NICE published a draft of its new clinical guideline on the management of MS. We're concerned that the new draft is a real backward step. What's been lost is the vision of a baseline 'seamless, person-centred service' that people with MS should expect. Unless it is revised, we believe the guideline will set back the availability and quality of care people with MS receive.
In March and April this year we carried out a survey of every MS nurse in the UK. The response was amazing over 97 per cent of nurses responded. But the results were disappointing. We found that we don't have nearly enough MS nurses to care for the more than 100,000 people in the UK living with MS.
Healthcare at Home delivers a number of MS drugs to people with MS. Over recent months there have been complaints about the quality of the service provided, with many people reporting that drugs have not been delivered when promised. As a result the company's helpline has been swamped by calls with many people either unable to get through or placed in unacceptably long call queues.
How was your MS diagnosis? To help launch an exciting new MS Trust project we're looking for people to tell us how their diagnosis went and how it could have been improved.
Congratulations to MS specialists from Milton Keynes and Wiltshire who won our 2014 awards.
A round up of the latest MS research:
Balance problems are common in MS. Lesions in the areas of the brain responsible for movement and balance or in the sense systems can cause problems with balance, which can result in walking difficulties and sometimes falls. This study examined balance rehabilitation to see if it could improve stability in people with MS.
Do you need to stop taking MS drugs if you're planning on becoming a dad? MS is most often diagnosed between the ages of 20-40, when many people may be thinking of having a family. However, very little is known about the effect on pregnancy outcomes and the health of the baby, when disease modifying treatments (DMTs) are taken around the time of conception and during pregnancy. This study aimed to examine the outcomes of pregnancies fathered by a man with MS taking a DMT.
This study looked at how often people reported their relapses and what effect their relapses had on their health, work and relationships.
"MS or not, I do Glastonbury much better now than I did back in 1993"
"Do your research, ask questions and don't be afraid"
"I probably go to the match more now than I did before I had MS. And I enjoy it even more too!"
"Keeping my sense of style was the one thing I could control"
Graham and Nicki Law got married in 1997. Since then they've discovered that they are one of only a handful of couples in the UK where both partners have MS. Here they share their story and explain how they've found that mindfulness can help them deal with their symptoms and support each other.
Everyone has good days and bad days but no mood lasts for ever. In Graham's book, Feel Good, he looks at techniques for improving your mood and coping with whatever comes your way.
In the May issue of Open Door we covered pregnancy and MS. In this issue we look at some of the questions mums with MS ask about childbirth and caring for a newborn baby.
We're constantly inspired by the amazing work of our community fundraisers. Now some of you are joining together to make supporting the MS Trust even more fun, more social and more effective. Donna from our fundraising team introduces the new Friends of the MS Trust groups
The MS Trust participates in the Cards for Good Causes national network of temporary Christmas card shops in churches, libraries and museums, selling cards on behalf of more than 300 charities. Sales from these shops contribute around £50,000 every year to the MS Trust vital funds to help us to help people affected by MS.
Amelia Southard is a writer and blogger who lives in Devon. She was diagnosed with MS in 2002. Earlier this year she took part in the MS Trust Continence Question Time, a series of short videos looking at some common MS bowel and bladder problems.
Visit our Open Door archive to browse every article since 2001.