Quick question.

[pinkvision]

Hi can anyone remember a couple of months ago there was a doctor or professor talking on Womans Hour on radio 4. The discussion was about concussions. Can anyone remember his name.

Thanks.

[Marnie22]

Hi. I don't have the info, but you might be able to find it out on their web page. I'm pretty sure Woman's Hour will have its own page on the BBC radio pages. If they do it will have stuff on past programmes and who appeared on them.

Good luck, hope you find it. 🙂🌸

[pinkvision in reply to Marnie22]

Thought I'd just ask before beginning to search, thanks Marnie

[headwayuk Partner Headway]

Hi pinkvision,

I've just had a chat with my colleagues and we think it was Dr Willie Stewart, alongside Samantha Ainsworth, who has a brain injury.

Here's the link to listen again: bbc.co.uk/programmes/p07zt9zf

Best wishes,

Andrew

[pinkvision in reply to headwayuk]

Yep found it earlier, thanks for the communication. He seems like an advocat for change within the brain injury world and I have just sent him an email asking his opinion on why certain types of treatments and therapies, taught in UK medical science and psychology departments, are not recognised and used within the brain injury establishment in the UK. Myself and others have had great success with optometry in particular and find it shocking that it is not taken seriously and is even ridiculed by the medical establishment. Other members think or have been told by their doctors that this treatment is pseudo science, but it works and is a successful treatment around the world. I think it is time to challenge the establishment somehow and get them to move away from their containing practices by telling people they are mentally ill when in reality they have a brain injury.

I sent an email to the Headway admin office ages ago asking if they could look into optometry and never even got a reply. Anyone with light sensitivity could greatly benefit from this treatment. Come on Headway look into this, do a survey on the site and get some details and opinions and if the numbers stack up do something about it. I can tell you from experience that optometry is amazing, it lifts fatigue and it feels like a release from a nightmare, cognition speeds up and there is a big physical improvement. I'm aware that not everyone may get a positive result but many will and why deny them the chance to get their life back. I've got the bit between my teeth on this one and will not let it go. I know for a fact that this will help people.

[samanthaash1993 in reply to pinkvision]

I've just sent a rather frank email to my neuro. I'm fed-up of my friends trying to tell me, oh, you had the haemorrhage before you could develop personality, it may have caused a bit of epilepsy, stop assuming there are problems where there aren't any. It's seriously annoying when people do that.

[samanthaash1993 in reply to pinkvision]

I had a brain haemorrhage a month after birth. Technically that means i have an abi. Yet my friends and family just think it's me assuming there are problems where there aren't any. They just don't get it.

[pinkvision in reply to samanthaash1993]

Hi Samantha, I've seen quite a few of your posts over the last few weeks. Looking for and answers and having a bit of a rant. I remember all this and it is very hard work and is frustrating and infuriating. We are in totally different situations with brain injury but I realised after a while that I had to be kind to myself and try to settle down to a working frame of mind that looked at a bigger picture. This was the only way I found that really helped and made me address what was going on. I found that rather than having my head all over the place I could deal with issues much better as they came and also found that people tended to listen to me a take me a little more seriously and eventually the wheels turned. Mindfulness helped me, there are plenty of guided sessions on youtube and if you give them a bit of time then you will find that you can gather your thoughts and go from there. I hope I don't sound patronising but give it a try, people won't listen unless you are calm and that does no one any good.

[samanthaash1993 in reply to pinkvision]

Oh no, you're not being patronising. I'm just trying to find out answers. Hopefully the counselling will help me. I just hope it stops my friends and family trying to be patronising saying it won't have affected my decisions and personality.

[headwayuk Partner Headway in reply to pinkvision]

Hi pinkvision,

Thanks for your reply, I'm glad you found the details.

We've certainly heard of optometry and are aware of some good feedback from people who have tried it. At Headway we do have to ensure that any treatments we recommend are effective and available at a reasonable cost, which does mean we generally back treatments that are available on the NHS.

We are very thin on the ground here due to the current situation, which may explain why you did not receive a reply to your email - I apologise for that. I will certainly raise this with my colleagues and we'll look into the evidence/availability as soon as we can, as part of our information review process.

Best wishes,

Andrew

[pinkvision in reply to headwayuk]

There is something a little curious about the situation with optometry. It works for many people and that's a fact. I have had communication with Prof Arnold Wilkins ret. University of East Anglia, the inventor of the Cerium Vision Technology system. He is one of the world leaders in this field. I asked why was this technology not available through the medical system to help people with brain injuries. He said they had been trying for years, DECADES, to get this system recognised and he was left dumbfounded and speechless with the lack of response from the medical establishment. My optometrist is also dumbfounded and shrugs her shoulders when I ask her. There is something really strange about all this. How can a vision technology that is taught in medical science labs in the UK and validated for use not be recognised by the medical establishment.

Because it is not a recognised mainstream technology the medical system, GP's and neurologists and psychologists have no idea of the benefits and very importantly, which has happened to me, they try to tell you that the effects you are experiencing are probably due to mental health issues. This is all a bit of a nonsense. I wonder how many people with brain injury start believing that they have a mental health issue and end up on antidepressants and other anti-psychotic medication when in fact their issue could be solved by having a pair of lenses.

Headway is a highly respected charity and has a powerful voice and could start asking questions about this situation.

You mentioned the cost of treatment above, that is a choice for people to decide via the private route, but if this could get recognised then either the NHS could send people to private practices or they could provide the testing and treatment themselves where maybe the patient pays towards some or all of the cost for lenses and frames. If you were to ask someone suffering from visual sensory overload to pay a fee to reduce it or get rid of it I think I know what they would say.

Cardiff university has an optometry teaching department and also has a clinic open to the public, I'm sure if there was a conversation between Headway and the university a better understanding and steps to move forward could be made. Also there is BABO the British Association of Behavioural Optometrists, a discussion could be had with them regarding the technology for brain injury and access to affordable treatment for Headway members etc.

This is all about having the will to do it. It is about having the will to ask the questions and find out the answers and make the challenges and fight to help people who really need it.

The booklets that you send out to people are prepared by experts in that field, why not get a vision expert to review treatments for visual issues including sensory overload and fatigue and produce a booklet. This would give everyone the current facts about the subject.

Thanks for your reply, could you please keep us all updated.

Kind regards.

[twice in reply to pinkvision]

We all know that the NHS is very limited in the after care for brain injury survivors and many of us have to find our own way in dealing with the long term effects of brain injury after being discharged from critical care, I have had great success with these glasses and really can't understand why people seem to think that if the NHS don't do it then it is therefore no good, people should at least be told the options available and not be dismissed by their gps who know absolutely nothing about brain injury.

[pinkvision in reply to twice]

Hi Twice, thanks my sentiments exactly. People need to know the options and also the validity of the treatment. This conversation needs to be had urgently to enable people to be informed about the technology, reduce brain injury effects and very importantly to stop being misdiagnosed or palmed off by GP's and neurologists etc. I agree the NHS can't and don't provide everything, as I said to someone before if there's something wrong with your sight you go to an optician, likewise here if there's something wrong with your vision you go to an optometrist. Doctors etc know about sight and tell you to see an optician, they don't know about vision and what or who is available to deal with it and come up with other reasons for the symptoms.

Would you follow this discussion to see what happens.

Cheers.

[twice in reply to pinkvision]

Will be really interested to see what happens about this, so pleased you started this discussion,

Thank you.

[FlowerPower62 in reply to pinkvision]

Thanks for doing this. Having got into this from your recommendation, I agree completely. Frustrated at the moment though, and my husband had his initial assessment with John Glover at the end of February, they couldn't fit him in for the next one until the end of march, and of course it never happened. Hope he can go soon. Let us know if you get a reply please.

[pinkvision in reply to FlowerPower62]

Will do or you could follow the post for automatic updates. Take care.

[twice in reply to pinkvision]

I would just like to add that part of my injury was contusion to my occipital lobe which is the main vision processing lobe in the brain, I had really bad problems with artificial lights especially fluorescent light and also bright sunlight and trying to judge distance , I couldn't even cross the road on my own because I couldn't work out how far away anything was and also double vision, the double vision was first treated by a optician who gave me prism lenses but couldn't help with other issues, even neurology told me that I would just have to learn to live with it? Really! Luckily I am a stubborn git and refused to believe this and done so much research until I found ghost in my brain book and that was the starting point for me with optometry and finally getting my final pair of glasses which incorporate prisms and coloured lenses, the pair I have got now I've had for a year and soon got to go back for a yearly checkup. My lenses are actually a shade of pink in colour. Coincidence or what.

[pinkvision in reply to twice]

Our visual stories are similar. I was sent to the hospital eye clinic tested and was told there was nothing wrong with my sight, at specsavers the trainee optician said there was nothing wrong with your sight but he also said that it's not the eyes that was the problem it was the processing in the brain (he had taken the module in uni). My GP at that time just waved that off as nonsense. I followed it up later after reading the ghost in my brain. Luckily the guy who wrote it was a scientist and opened up the discussion through his book. It's time to open this up in the UK, so many people could benefit.

[Whitleywoman]

After being told by ENT consultants, 2 balance clinics, opticians and doctors they couldn't detect any balance problems so I must be cured, I got fed up and paid to see a behavioural optometrist. The optometrist found I had nystagmus and a significant vertical mid line shift which he thought would be enough to make anyone feel dizzy. I now have some very expensive glasses which help somewhat, but more importantly I have someone who listened to me and believed me when I told them this was not just in my imagination, something was wrong, and I finally have an explanation for one of my worst ongoing symptoms. It is vital that the UK medical community catch up with this and start taking behavioural optometry seriously.

[pinkvision in reply to Whitleywoman]

Totally agree, the discussion needs to be had and soon. It's a bit of a scandal really, these vision treatments/therapies have been know to work for decades.

[ClaraJ]

I think I may also just have commented on one of your earlier posts from a couple of years ago, but I think I am in the same boat following a concussion 4 months ago, and could potentially benefit from behavioural optometry. Otherwise I am worried I will never get back to work! I was supposed to have an ophthalmology appointment yesterday, but it ended up being over the phone. In any event the consultant told me I needed to see a neurologist, not an ophthalmologist, so I’m back to square one With the GP. To speed things up whilst I await a neurology referral, I am wondering whether seeing an optometrist would be useful.

All of this is a long way of asking how you found your optometrist, and how you can check they know what they’re doing? I don’t know anything about them. If you have anyone to suggest, let me know. Thanks so much for sharing your story. I am in the middle of the Ghost book and finding it rings bells.

[pinkvision in reply to ClaraJ]

BABO the British Association of Behavioural Optometrists have a web page and you should be able to find one in your area. My optometrist has retired otherwise I'd give you her information. There is John Glover in Stockport who is supposed to be the number one guy and other people who use this site have seen him with good results. Maybe you should write a post asking how did people who saw John Glover got on with their vision issues if it will give you confidence.

Cardiff university have a vision clinic and carry out optometry testing. They have a department that teaches it there.

[ClaraJ]

Very helpful- thank you. How many appointments did you need and how often? The problem is I am based in Twickenham and soStockport and Cardiff are quite a long way away, but could be worth it to see the right person.

[pinkvision in reply to ClaraJ]

There are plenty of optometrists in the London area and they are on the BABO site. If you live in Twickers you maybe minted, if so go to the Mind-Eye institute in Chicago US, or the Padula Institute in New England US.

[ClaraJ]

😂 It’s funny the impression people have of Twickenham.

In all seriousness, I do have family in Chicago and in Boston, but would one appointment there be any help? I presume I would need follow ups?

[pinkvision in reply to ClaraJ]

I have worked in twickers for my friend's brother, he says he's poor and bought a 3 million pound house, it was worth 5 million by the time we finished it.

You could just send an email and ask, they have clients from all over the world. If you have people there like you say then a couch for a few days is sorted. Or you could just go to one in London or John is Stockport two trains and you're there. The culture shock may be a little overwhelming though (joke).

[pinkvision in reply to ClaraJ]

check out the facebook group 'the ghost in my brain' there are Dutch, Swedish, Canadian and Americans who have been to see Dr 'Z' you could ask about the travel and appointment times and follow ups, Dr Z may also be able to recommend someone in the UK for you to see.

[ClaraJ]

Great ideas, thanks!