The All Wales Medicines Strategy Group (AWMSG) are seeking the views of multiple sclerosis (MS) patients and carers about new medicines it will consider recommending for use in NHS Wales, such as fingolimod (Gilenya), to treat MS in paediatric patients.
They would like you to share with them what it is like to live with MS or to care for someone who has it, and by contributing you will provide invaluable information about patient and carer needs.
In addition, they will be asking clinical experts to give their views and the medical facts. All of this information combined will give a really good insight into the real effects MS has on patients and carers and help inform the drug approval process. You are not expected to have all the answers, but anything you can share will be incredibly helpful.
If you would like to share your experience download the questionnaire to complete and send it to the address below by the 18 March 2019:
All Wales Therapeutics & Toxicology Centre
University Hospital Llandough
Penlan Road, Llandough
Vale of Glamorgan
Alternatively you can fill out the questionnaire here. All information shared with AWMSG will be kept confidential.
AWMSG is meeting on 15 May 2019. At the meeting the group’s lay member will summarise all comments from patients and carers, and patient organisations. Only AWTTC and committee members will read the completed questionnaires.
If you would like more information, or help with completing the questionnaire, please call 02920 716900 or email AWTTC@wales.nhs.uk.
In her latest blog, MSer Joanna talks about her first round of Lemtrada and reveals what made recovery easier for her.
Back in June 2018, I had my first round of Lemtrada. Here’s all the things I wish I’d been told beforehand!
Drink as much water as possible, and I'm talking in excess of 3 litres a day. Take cordial to make it easier to drink. Especially as when that awful steroid taste gets in your mouth, water is almost unbearable. Keep asking the nurses for top ups. It helped keep my body temperature and blood pressure down, and held any headaches at bay.
2. Mint imperials are your friend!
That steroid taste is awful during the infusion, but does go afterwards. Mint imperials helped a lot. Take a couple of bags with you. You won't regret it.
3. Get outside
I found it helped if I could get out in the fresh air. You're not bedbound during your stay. Stick around during your infusion, but it helps to get outside even just for half an hour at some point that's convenient.
4. Keep busy
Some days go quicker than others but there's only so much of the comings and goings on the ward that you can watch before you need something else. Watch that series you've been meaning to watch on Netflix, write someone a letter, or do a crossword.
5. Try and retain normality
Every morning I had a shower and did my hair and make-up. Having a bit of a routine made me feel normal. Keep this up during your recovery too. It really does help your mental health.
6. Steroid crash
I only took steroids on day 1 to 3 of my infusion. Because I hadn't had steroids before the Lemtrada, my body had a hissy fit. You might have some kind of emotional crash. Just to add insult to injury, you'll probably break out in what looks like hives. Don't touch them. It's not that itchy unless you make that fatal, first scratch.
7. Don't suffer in silence
Us MSers are used to putting on a brave face. We rarely feel 100% but for the most part we shrug it off. But you do not need to be superman or woman when you're in hospital. Have a rash? Accept the IV piriton. Have a tight chest? Take the nebuliser. Nobody's going to call you a hero for soldiering through. They'll probably say you're stupid if you do that!
Ask all the questions. Continue to do so when you come out. Use the #Lemtrada hashtag on social media to find other people in your shoes. If you're in the UK, join the Lemtrada group on Facebook. Keep on learning and talking to other people that "get it".
9. Plan ahead
The last thing you'll want to do when you get out is go to the supermarket. You'll think you can, but after 20 minutes you'll probably realise it's the worst idea of your life. Whilst in hospital, get ahead of the game and schedule a home delivery.
Rest. You're going to have good and bad days. You might feel like you're having a "pseudo relapse" with every symptom you've ever had flaring to it's worst. You'll have a good day then pay for it the following day. Be gentle on yourself. It's not a miracle cure, you won't suddenly be OK overnight. Things might take a while. But it'll be worth it.
You can read more from Joanna on her blog ms-understood.com
I am thrilled to share a sneak peak into the latest issue of New Pathways magazine, which is out now!
Our cover star this issue is MSer and HR Specialist Rebecca Armstrong, who discusses being your own boss and taking a step into self-employment on page 16.
On page 24-25, wellness coach and Director of Work.Live.Thrive Zoe Flint discusses how relaxation can help boost your immune and central nervous systems. This feature all about mindfulness for MS shares Zoe's insights and her top 5 things to get your started.
Also, MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carer. Ian says, 'It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person.' Read the full article on page 12, and don't forget to check out his 'revisited' article on page 42 all about Shopmobility.
Fats have once again been dominating the news of late, so we asked MSer and Nutritional Science Researcher Sharon Peck to reveal the truth and explain what we really need to know on page 19. We also take a look at the natural remedies lurking in the back of your kitchen cupboard that could help relieve MS symptoms on page 18.
If you would like to see something specific in New Pathways please email me and let me know your thoughts or feedback.
Editor, New Pathways
This issue of New Pathways magazine is jam packed full of a variety of news, features and real life stories. Start your read by catching up on all the latest developments in MS on pages 4-10. Then why not discover nine anti-inflammatory foods that could benefit your diet and MS on page 34.
Next we take a look at how a condition that predominantly affects women, actually impacts men on page 12. And on pages 30 and 32 MSer and feature writer Ian Cook revisits Access to Work and gives electric wheelchairs a spin.
Stem cells research and personal stories are still dominating the news, so we thought we would produce an update on this ever popular treatment option on page 24.
Also in this issue, MSer and HR Specialist Rebecca Armstrong explains how to get the best out of occupational health on page 16, we take a look at the therapeutic benefits of horse therapy on page 18, and Rosalind Barton reveals the highlights of her surprisingly accessible trip to Singapore.
Editor, New Pathways