Headway should be asking Princess Anne if she would interview for newspaper or television.

[Graceissufficient]

Her experience would help the issues of minor brain injury and PCS get global coverage.

If she would front a TV documentary interviewing others even better.

[Teazymaid]

I had thought the same Sue 😊

[Nafnaf87]

Good morning Graceissufficient

Headway should do lots of things to make itself more relevant to the people it is there ostensibly to support. Interviewing and/or getting some patronage off an elderly Royal lady may score some headline points but would not change the bottom line. Many, many of us are left without basic support by the system, and worse, actually end up abandoned and later attacked by the system.

Almost the only benefit I have found from Headway in 27 years is this place and though I do not live here I, like many others, have found some good advice over time. Edit: from other users and brain-injured, not Headway

Best wishes

Michael

BTW I am not anti Princess Anne or the Royal family, they do a good job but are human and are unable to be across absolutely everything all the time

[Graceissufficient in reply to Nafnaf87]

Her experience would get column inches, it would be read or watched across the world and it would highlight the issues. Brain injury is little understood. Just in the way Princess Kate is highlighting cancer recovery issues.

Getting public awareness is vital for charities, and I write as a former Fleet St hack, as well, of course, as "an elderly lady".

[Nafnaf87 in reply to Graceissufficient]

I do not disagree with you as I think my answer makes clear. I am rather fed up of Headway doing what I see as glory stuff and not doing the basics.

[Teazymaid in reply to Nafnaf87]

Headways pointed me to this group and it has been the only place I have had support , even medical advice on where others have tried before , and the total understanding of the mess regarding rehab and living with a TBI that needs to be recognised and made public sue

[Nafnaf87]

A friend just sent this to me - Prince William at Mens Shed learning how to make a tree-hugger - brilliant

news.sky.com/story/prince-w...

[JPBeeves]

yes I agree that she should do something to help.However, a greater need is to get headway equal in all area’s and not be a postcode lottery

[Nemo24]

Fabulous idea & Princess Anne is such an icon.

[Mhelpsme]

A brilliant idea.

People ‘notice’ info more when a Royal is included. Shouldn’t have to rely on such tactics, but if needed (and it is) then we should. Michael J Fox pushes the awareness of Parkinson’s, but if I mentioned this to my son’s they’d say “who?” Mention a Royal and they’re recognised and we need the world to recognise our problems.

I’m currently having ‘treatment’ from a neuropsychologist’s assistant - never even met the actual doctor I’m registered as being under! The assistant has done an assessment, cognitive test and her feedback sessions and report tell me, to use her exact words, “Your brain isn’t broken you have no cognitive issues, as shown in the tests”. I don’t think I’ll ever forget that sentence even though I cannot remember what else she says. I feel cheated, let down, unimportant BUT I know she’s wrong and at our next appointment I’m taking online info describing cognitive problems and asking her why I have these symptoms if I don’t have any cognitive problems. I’m not giving in to so called ‘test results’.

I’m now going to check my diary (digital memory) for what I’m doing today and if I’m lucky I’ll get through the day without forgetting what I was supposed to do or getting too tired to do it. Hasn’t happened yet but there’s always a first.

Sorry, rant over 🫢

E

[Graceissufficient in reply to Mhelpsme]

That's appalling. Their knowledge of the brain, and their ability to "see into" the brain is so limited currently, and there is a general tendency in medicine to place heavy dependence on tests (often flawed in themselves) and measurements and not to listen.

Then we are made to feel as though we are lying or drama queens - which is a humiliation - when we are in fact suffering and the short coming is theirs.

I remember once telling my gp I had whooping cough - I had had it for months, all the symptoms as carefully described in an Edwardian medical text including that unmistakeable long indrawn whoop. He told me it wasn't possible (!)

[Mhelpsme]

If it’s not written down in their journals then it’s not true as far as they’re concerned.

One day in the future doctors will look back on this as the “dark ages” of understanding brain injuries. No help to us currently though.