I am so glad to have this illness at a time when we have access to information, opinion and support online. If my only source of information was my neurologist, my life would be a complete mess by now!
I am a big supporter of the NHS, my parents were both GPs and I’ve been on marches to protest funding cuts, but … I really don’t think the NHS has it right yet, in managing chronic illness and supporting patients with long term health problems. It is common for MSers to have a long fight to be taken seriously, to be referred to a neurologist, to be diagnosed and then to receive appropriate treatment and support.
Meanwhile, in other parts of the world, rapid diagnosis and early treatment has been shown to be the best option for patients in terms of minimising progression and disability and the most cost effective for health services.
At present, I see my neurologist for 10 rushed minutes once per year. He doesn’t even ask me about new symptoms or my opinion on anything! It’s a very deflating experience and I don’t feel at all supported (probably not his fault – what can he do in 10 minutes?). I should have had access to an MS Nurse for ongoing support and advice for the last few years, but unfortunately my neurologist forgot to refer me and I have slipped through the net (despite numerous phone calls and requests from me).
I recently had an appointment with an Occupational Therapist, which has been a really positive experience. She has given me advice, access to equipment and most of all, she has listened to how MS affects my life. She has also managed to chase up the MS nurse service and they are finally acknowledging my existence! Thank you Hannah 😊
I have learnt a lot about MS through reading and researching online. The MS Trust, MS-UK, Shift MS, the MS Society (amongst others) are all excellent sources of information and guidance. Another source of knowledge is Dr Aaron Boster, who is an Ohio based MS neurologist with a Youtube channel, where he seeks to educate and empower people with MS. Dr Boster works on the premise that neurologists and other practitioners working with MSers should have the goal of helping each person to be the “most awesome version of themselves”. I love this! I want to be the most awesome version of me that I can be! Here’s a short video in which he answers viewers questions on how to manage their MS symptoms …
There are many other videos on a variety of topics linked to MS on his YouTube channel … well worth a look if you, or someone you care about, has MS.
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I have spoken before about following the journey of Scott McCormick (Gogglebox) as he underwent HSCT at Hammersmith Hospital in London. Scott is recovering well, has had no further disease progression and is now back at work and enjoying life. He is doing all he can t raise awareness of HSCT.
He has written a couple of blog posts for MS-UK to summarise his experience …
Part 1 My neurologist tried to talk me out of having HSCT
Part 2 I was told to expect the worst I could imagine, and then some
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My main source of information, advice and personal accounts of those who are seeking or have had HSCT has been through the UK Facebook support group. This is a closed group for MSers and their supporters only.
I thought I’d share the link in case any fellow MSers are interested … link
Another source of support is a new UK charity, AIMS (Autoimmune and MultipleSclerosis), which was set up a little over a year ago. A group of MSers and their partners experienced the tough journey to access HSCT and they set up AIMS as a means of helping others on that journey. They are now a flourishing charity and have started rolling out travel grants to those of us having to go abroad for treatment.
You can read more on their website here. I would recommend anyone who wants to know more about the treatment, to read their excellent summary “What is HSCT?”. AIMS also have an active social media presence and can be found on Facebook and Twitter …please follow them and share with your friends.
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On Monday it will be just 6 weeks until I set off on my journey to Moscow in an attempt to stop my MS progressing further. I’m feeling really positive about my decision and so grateful for the support of my family and friends ❤️
I’m a little tired and stressed, but this is more about the worry of getting myself and my home ready and managing all the planning and practicalities involved.
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We are still fundraising and have a long way to go before we reach the total needed to fund my treatment. A family member is kindly lending me the outstanding funds as I am worried about delaying my treatment any further. This means that I will be continuing to fundraise after my treatment so that I can repay my loan.
My journey to Russia begins on Monday 16th March and we are holding a fundraising fare well tea party on Sunday 8th March. We’re still finalising the details and will share those with you soon, but please put the date in your diary … we’d love you to come along and bring your friends and family 🧁
