Please help support the centre by joining the 100 club, it’s been a difficult year and it would really help if members would join. £5 a month, email firstname.lastname@example.org for more information. Many thanks,
Warning: most of the studies so far have reported data on single cases or on small numbers of people. They do give a general indication but we need to interpret them with caution.
This is a rapidly evolving topic. We will share any updates with you but if you want any further news first hand you can sign up for future issues of Research Update straight from the MS Trust: www.mstrust.org.uk/keepintouch.
The centre is planning to open for Oxygen initially to MS members ONLY from Thursday 3rd September. (The gym will also be open but will need to be booked). We will only be able to accommodate 3 people per session due to social distancing. We are still working on the logistics of this, it is likely that the following will happen. You must be aware and declare that you understand you are coming in at your own risk. The Committee will be looking at the logistics of opening up for physiotherapy, osteopathy, footcare and massage and I will keep you posted. I am still furloughed but making a start on things. If you have any queries please email me for the time being as I am only in the office once a week. Procedure (still in draft form):
Member to arrive at the centre and wait in their car, to be called in
Member should confirm that they have no symptoms of Covid19
Members should wear a mask that you can either bring with you, or you can make a donation for one at the centre. The centre masks are CE Certified masks, Type IIR
Sue will take your temperature before you enter the building
Use hand sanitiser outside the main door before entering the building
Bring in your own water and container
No socialising at all, so no tea/coffee/biscuits
Do not bring anyone else with you unless necessary, if you do they will need to wait in the car.
Oxygen masks should be put on as soon as you enter the chamber. Breathing may require some effort before the tank is pressured. You need to keep you mask on until the end of depressurisation.
You will need to sanitise your own masks using soap and water at home.
The chamber (inc door handles, chair arms, etc) and oxygen pipes will be sanitised by the volunteers after every session.
We are looking at going cashless and currently looking into this.
If you need the toilet you will need to sanitise it after use, products will be provided
There is also a 5 litre hand sanitiser on the main table in the reception area
If you feel unwell you should not come in and if you feel unwell within 2 weeks of being at the centre you will need to tell us promptly
To use the gym you need to telephone to book, only 2 people allowed at one time. The equipment needs to be cleaned after each use, which will be done by Sue or a volunteer.
Please bear with us in these testing times. We will do everything possible to make sure the centre is safe for our members.
NICE* has announced it will not be recommending Siponimod (Mayzent) as an NHS treatment for active Secondary Progressive MS (SPMS) in England and Wales.
NICE acknowledges that there are very limited treatment options for people with SPMS and clinical trials have shown that Siponimod can slow the worsening of disability.
However, NICE has concluded that they are unable to recommend Siponimod as a cost-effective treatment for the NHS for England and Wales without more detailed evidence and analysis of the data. David Martin, the CEO of the MS Trust, has said:
We are hugely disappointed by this initial decision. Time and time again, we hear from people with secondary progressive MS struggling at home, feeling like they have been forgotten. Just earlier this month, a new report has highlighted the significant gaps in support and services for people with SPMS. Not everybody will be eligible for siponimod, but we hope that the availability of a new treatment will lead to a renewed focus on the needs of all people with SPMS.
The MS Trust is reviewing NICE’s decision and is continuing to make the strongest possible case for NHS approval.
* NICE stands for National Institute for Health and Care Excellence (NICE) and they provide clinical guidelines that are used nationally. These are recommendations on how healthcare and other professionals should care for people with specific conditions. The recommendations are based on the best available evidence.
MS and the menopause share some common symptoms including bladder weakness, hot flushes and difficulty sleeping. In fact, there are 20 widely recognised symptoms of menopause are also symptoms of MS. Over the last few weeks both the MS Trust and the MS Society have run articles about the menopause and MS and here we share a round-up of the information.
As so many more women are diagnosed with MS than men, hormones have been a key area of research in MS. There have been a few small studies into MS and the menopause and they show that there was a worsening of disability after the menopause which could not be linked to other factors such as lack of vitamin D. However we need to remember that age could play an important part in this and as these studies are so small it is not possible to draw conclusive conclusions.
There is a lot of information on the MS Society and the MS Trust websites below about the research and about managing symptoms:
* Susans article speaks about a webinar about MS and menopause led by the MS Society. Sadly the date of this has passed and we didn’t know about it in time to promote it. We are trying to find out if a recording is available which will share.
The MS Trust has put together some tips on how to manage some of the common menopause/MS symptoms although we would always recommend talking to your GP/MS nurse if you are struggling with any of your symptoms or if you start experiencing new ones.
Hot flushes – Wear layers of light clothing so you can remove some layers if necessary; carry a handheld fan or cooling spray with you in your bag; avoid potential triggers such as caffeine, alcohol, smoking and spicy foods; exercise regularly; and have cold drinks.
Night sweats – Keep your room cool and well ventilated; have a cold drink by your bed; have a cool or lukewarm shower; put a towel on your bed if necessary; wear light clothing to bed; try a cooling mattress topper or pillow.
Low mood – Make sure you’re getting enough sleep; try to exercise regularly; have a go at some relaxing activities like yoga or meditation; talk to someone about how you’re feeling; do something you enjoy every day.
Reduced sex drive – Talk to your partner about how you’re feeling; take it slow and make more time for foreplay; try to relax by doing some breathing exercises or practising mindfulness; and explore your body through a body mapping exercise.
Sue is due back at work on 1st August where she will initially be sorting things out and implementing changes with a view to starting Oxygen therapy at the end of August, MS Members will be given priority.
The gym will also be open mid August but appointments will need to be booked with Reception to make sure social distancing cleaning protocols are followed. Please bear with us it will only be Sue in and there will be much to do.
Self-care management and support education for chronic illnesses has never been more important than now for your patients and caregivers due to the current health and economic climate.
talkhealth is very proud to announce the launch of our latest support programme myMS, our twelfth support programme in our collection of programmes available FREE of charge to primary, secondary care and specialist clinics in the UK. The programme is focused purely on self-care management of the condition and has been jointly developed by MS experts, charities and talkhealth under the new PIF – Trusted Information Creator scheme (formerly NHS England’s Information Standard).