Last reply 3 months ago
Hyperbaric Oxygen Chamber for Norwich!!

This treatment has been clinically proven to help people with MS and others. Why is the nearest HBO facility way out at Chedgrave? If this message strikes a chord with any of you please help me to get this therapy set up at the ‘bells and whistles’centre in Norwich. I can only attest to the fact that in my early days with this disease in Canterbury, HBO helped me enormously. At the end of the day I would rather spend an hour in an HBO chamber than have my feet or head massaged .Okay..these kind of therapies feel good but they don’t do the good that an HBO chamber would do. It seems bizarre that such a helpful resource is being ignored by th MS Therapy Centre in Norwich..anyone got any ideas why ??? I worked for these guys as a volunteer for a while but the manager was resistant to the idea…..

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pug1
3 months ago

There is the Suffolk Oxygen Therapy Centre at Great Blakenham near Ipswich if anyone is interested in HBOT. I have been having the treatment now for 5 years and it makes the difference of me being able to carry on working. They are a second family to me and you meet others with not just ms but other conditions as well. To contact them visit http://www.suffolkoxygentherapy.co.uk
This centre has been established for 31 years.

With Norwich it could be down to cost.


stumbler
3 months ago

@jo-barchi , there must be a reason why this capability isn’t available at the Norwich MS Therapy Centre.

I should imagine that there are cost implications as well as logistical considerations. The MS Therapy Centres are run as charities, funded entirely by donations. So, there may even be a cost versus demand consideration as well.

I’m sure that if you posed a formal question to the trustees, then they’ll explain the situation.


jo-barchi
3 months ago

The Canterbury MS Therapy Centre started life in a portakabin and they managed perfectly well with two ex navy HBO’s .People came from far and wide..guys with leg ulcers,brain injuries et al. If they can do it any one can!The Norwich guys are not funnelling their money in the right direction IMO. I had a quote for £6000 for an HBO chamber when I worked for them. Not a great deal of money when you consider that my hike up the Andes raised over three thousand pounds for the MS Trust! Manager…..not interested…such a waste of a vital resource when they have the money and space….Stumbler..what Trustees?Life’s too short…


stumbler
3 months ago

@jo-barchi , the Norwich MS Treatment Centre would have a Board of Trustees that oversees the management of the centre.

At the bottom of this webpage, there is a link to a downloadable Information Pack, which gives details of the set-up of the charity.


jo-barchi
3 months ago

This is for Pug1..I can’t seem to reply to you…anyways keep shouting about the benefits of HBO…although the nearest chamber to you is Suffolk,here in Norfolk we seem to have only one much used HBO chamber out at Chedgrave,yet we have a brand spanking new MS Therapy centre who seem disinterested in Hyperbaric Oxygen therapy…shame…so many lives that could be improved but currently (unless someone wishes to correct me) rely on yoga and having their heads and feet rubbed…I ask you!!


jo-barchi
3 months ago

Stumbler…no link


novemberrain
3 months ago

Hi
I moved to Chedgrave last year. Just in case (I’m benign for 20 years) but for other reasons too. I will go and ask about their thoughts on why this is. Also seeing a counsellor from bells and whistles therapy centre (for non MS reasons) but she may be able to shed some light. I’ll see if she knows…


stumbler
3 months ago

pug1
3 months ago

The Suffolk Ms therapy centre is run by a board of trustees and the chamber operators are all volunteers. Although we pay for our wonderful treatment they have no other funding only fundraising events. To open up the centre they will be offering alternative therapies and exercise machines in the coming months. I have seen miracles happen with children with autism and the elderly benefit from this treatment. Don’t knock it before you’ve tried it😃!!


jo-barchi
3 months ago

@novemberrain..you and I have a lot in common!! My MS has been relatively benign for the 18 years that I have had it with four known relapses…last one just before Christmas..yuk and it was the worst ever..spasms in my back following just jaring it whilst changing the bed..haha!

I too have had and continue to have periods when I am more impulsive than I used to be and less inhibited..it’s recently got me into some hot water…anyways, this is just to say..keep on the toes of the MS Therapy Centre. The HBO is really a facility that they could use and yet Paul refuses to acknowledge it but just hires more therapists. Given the choice people I know including me who have had HBO would certainly rate it higher than having their feet massaged..
Oh and I start a course of counselling in the next few weeks!!


novemberrain
3 months ago

Neuro suggested I might want to see a psychologist about my perceived behavioural changes (as noted by my husband! No thanks). It’s not MS related change I know that. So I turned that offer down. I’ll pm you! We can meet in Naaarwich one day perhaps?


birdboy
3 months ago

Out of interest, where is your evidence for this treatment being “clinically proven”. This recent meta analysis finds that there is no benefit to such therapy for people with MS.

https://www.ncbi.nlm.nih.gov/m/pubmed/20415839/


jo-barchi
3 months ago

Oooo birdboy…where do I start? Perhaps with the question ‘have you ever tried this therapy for yourself??’

Neurologists are loathe to put pen to paper but mine,a highly thought of now emeritus neuro who worked partly out of Kings College Hospital in London where he lectured and worked with young medics wrote a paper published in The Lancet which I will try to find for you…

Basically from 17 to 33 metres down, such as a diver might experience,pure oxygen is ‘forced’ if you like into the body going into parts of the brain/blood barrier and body in a situation contrived by a Hyperbaric Oxygen Chamber.It reaches parts of the body that nothing else can reach!!

There is solid evidence that people with head and brain injuries,leg ulcers,kids with autism and many other conditions experience great benefit from this treatment.They are being referred my medical professionals(fact).

I myself experienced great feelings of renewed energy and sensory improvement in my fingers(I am a pianist) the spasticity of my lower left leg disappeared and my left foot drop improved.

ATM I am experiencing pain from an abscessing tooth( not MS related)! so now is not a good time to tell you more.

In the meantime,I can only suggest that you get a feel for HBO by listening to people who undergo it. There is a centre at Chedgrave in Norfolk and one in Suffolk. One of the threads of this rant of mine was picked up by a guy who uses the Suffolk centre. Read what he says…

I’ll get back to you but in the meantime,book yourself an appointment to try it out for yourself.You will need an intensive course to start with. I have never come across any gain-sayers in my great experience with MS and its effects. I have worked closely with the MS Trust for many years fundraising for them by climbing in the Andes, abseiling(!) and appear on their exercise video. I have also given many motivational talks to people with and without MS so I’ll maybe do some short-cuts and ask them for some paper work for you to peruse. The MS Society is pretty unhelpful..all they seem interested in is wheelchair models and incontinence aids IMO
Best wishes
Jo

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