Don't forget the Headway helpline is here to help! - Headway

Headway

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Don't forget the Headway helpline is here to help!

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headwayukPartnerHeadway
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The Headway helpline is a confidential service, available to anyone with a question about brain injury - from survivors and carers to students and professionals. We can discuss a wide range of issues relating to brain injury, from the initial injury and its effects, to long-term rehabilitation and support.

Contact our helpline free on 0808 800 2244 or helpline@headway.org.uk

We're open from 9am - 5pm, Monday to Friday. We look forward to hearing from you!

You can also get a wealth of brain injury information and details of Headway services near you on our website at headway.org.uk

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29 Replies
lew-ann profile image
lew-ann

It good to see an email address included as I find phone calls rather challanging 😀

SAMBS profile image
SAMBS in reply to lew-ann

Hi Lewis-Ann pls see my reply to Matt, I know talking after a BI can be difficult, because many of us slow down in our speech,

in English I think I must have a sort of BI verbal diarrhoea now, :-) but I can relate to you because when I have to speak to French here about anything. specially on the phone, they speak far too fast for me, because with thinking in English, translating many words to French that I don't remember can be a nightmare, especially as I can't master the accent.

When I was 7, I'm retired now, I had a Scottish accent, but was sent to boarding school in Surrey, and dad paid for me to have elocution lesson to change to an English one because he thought I might be bullied! Looking back now, it was a bit like being Eliza Doolittle in My Fair Lady, and ended up talking slower than I had, through correct 'enunciation' . We lived over the years in many different parts of England and I could always pick up the local accent, quite quickly.

Since the BI over here, my speech did slow again and still is in French, so take heart, give yourself a chance or have a go at talking to the Helpline, may be good for your confidence also with them.

Bon chance! Shirley xx

razyheath43 profile image
razyheath43

yay! the helpline pepole are amazing

Tortie14 profile image
Tortie14

So grateful for the Helpline it really is so helpful not just for excellent information but support too.

SAMBS profile image
SAMBS

...absolutely to above, but to Matt and Lew-Anne, I say especially, if you can get over the fear of, it's great, cos someone answers , gives their name and all you have to do is say Hi, I'm ???, and because theŷ do see the posts and open replies also, you won't be a stranger to them!

It's not like phoning a company where a telephonist answers, and you have to say I want or would like to talk to someone, and sometimes have to tell the telephonist what you want to tell the 'helpline person'

It's the helpline person who Answers, I haven't put the names of some I know now, cos I don't know if its permitted on here, and also if everyone phoned and asked to talk to same person, there could be a telephone log jam I guess.

So if you can pluck up courage pick up the phone when you need. I have Headway phone number all ready in my phone, complete with UK code, and I'm lucky I get free calls to UK via Orange from here. The Headway number is worth it's weight in gold to me, and makes a good change from typing all my 'conversations'.

Matt, they're based in UK, all speak English, I haven't tried my French out on them:-)) yet!

Good luck to you both! Shirley xx

Contact their helpline free on 0808 800 2244 or helpline@headway.org.uk

lew-ann profile image
lew-ann in reply to SAMBS

I don't mind making phone calls it's just no one can understand I get 'this is a really bad line can you say that again ' and repeat and I use gets worse then the good old brain refuses to engage fully it's frustrating and sometimes amusing when people scream down the phone thinking it's a prank call I sound like a complete drunk (I also don't drink. Alcohol)

I made a phone call last week because I had too it has taken me 12 month to write a script in case my brain failed me it did and the person at the end of the phone was let's say I think she was having a bad day and she made me repeat myself 7-8 time that was the good old PIP claim line

So I won't be making anymore phone calls for a while

Lewann xxx

Ps sorry this was so long as it's the only way I can rant on for so long xxx

SAMBS profile image
SAMBS in reply to lew-ann

Hi Lewann and Eleanor, I'm really sorry and surprised to read of your experiences with the Helpline, we've all always found them understanding. Certainly I've never had a problem using that phone no, here from France. Silly question from me, is it possible Lewann the number was misdialled or that there were problems on the line, hence the scratchyness /screaming?

They are there to and do listen to the problems you are experiencing from your brain injuries, or other causes, of course they are not doctors, but are so familiar from posts made on here and phone calls to them can sometimes and do point you in the right direction of which medical professional to ask or seek help from.

Have either of you looked At their downloadable PDF Factsheet booklets and you may well both also see things in those that will answer some questions.

PS Lew-Ann, sorry to keep spelling your name wrong, but you keep ranting here about whatever if needed, :-) Shirley - good weekend both. x

EleanorS profile image
EleanorS in reply to SAMBS

Sambs, people wont be able to understand my badly worded reply. I was trying to say that the helpline is super helpful. I would re write the reply but ive got to give the brain a rest now. have a good weekend!

SAMBS profile image
SAMBS in reply to EleanorS

sorry Eleanor, see I hadn't even fallen in with that fact, even though I'd probably read it :-) frustration has to the worst side effect of anything we end up having diagnosed!

EleanorS profile image
EleanorS in reply to SAMBS

ah SAMBS, apologies not necessary & dont worry about it. im havin another bonkers day , im frustrating my family more than myself :) (feelin brain fatigued with daily life etc, hope i dont konk out before end of the day :) going to push on through. take it easy, sun's been shining :)

SAMBS profile image
SAMBS in reply to EleanorS

I have loads of those -bonkers days and friends or families that don't understand so get frustrated also :-) sleep well! Shirley x

EleanorS profile image
EleanorS in reply to SAMBS

Ah thanks for your understanding Shirley, i guess we'll all get there...hope you have a good saturday x

lew-ann profile image
lew-ann in reply to SAMBS

Hi Shirley it was the pip claim line

I had a tracheotomy and my speech has never Been the same the throat muscle don't syncranise with the brain I also I cannot think of the word but I can discribe it NOW WHATS THE NAME OF THAT GAME lol best medicine avoid these situations

I did have a lot of help in 2009 including speech therapist was not really much help

But as for headway I would alway email as I would not be able to remember the convesation anyway

Have a good evening

Lew-ann ps don't worry about the name 😄

SAMBS profile image
SAMBS in reply to lew-ann

...how about Synconicitry ? don think it's right, but Lew--Ann we are here for you, and that's one good about still having our minds and being lucid! sometimes :-))

wow you have got a lot to cope with, but you are doing really well, good on you......

just got in from the village social comite tonight, sorry that's spelt in French, I don't understand half what they say either when they talk too fast for me.....duh! but at least they accept me for who and what am I am, they seem to like me as well, which is most important for my morale. then they make sure I don't fall over in the dark when we leave the village hall, it's a good job I live opposite it...

EleanorS profile image
EleanorS

I called the helpline for bouncing around ideas and stuff and answers to specific questions , which i got, where i tried finding an answer elsewhere but couldnt...so thankyou very much! And also for the pointers and help tht i didnt know i needed, and wasnt calling about, but i really did need and find extremely useful. So no pressure then! No, seriously 'answers' nd suggestions are not expected,its just good to bounce the ideas around if youre perhaps finding a route through something practical to do with b i for example, thanks again

Lizzy2612 profile image
Lizzy2612

Hi I am new not sure if I have the right webpage. I have substained concussion after a head injury that occured at home on 14/05/16. Would like to talk to other suffers that are going through it or have suffered concussion as i feel like a prisoner in my own home or any expert

sospan profile image
sospan in reply to Lizzy2612

Yes you have found the right place. Many of us have gone or are going through much of the same.

Post a message on the main board, we would all be delighted to help

Lyndaryan1 profile image
Lyndaryan1

Hi,

I'm looking for a little bit of advice and wonder if anyone can help me at all? Bit of a long story but here goes. Fourteen years ago I suffered a SAH which took me over three years to recover from to anything like a normal state. I had ongoing issues like most people with severe headaches but the really bad memory issues and memory loss I had managed to overcome. Early in December this year I was admitted into York Hospital after having a really low drop in blood pressure. The doctors in York had me straight in for a brain scan which I thought they were doing out of a little bit of panic due to my medical records. During the scan a consultant was called as something was noticed so I then had dye inserted so they could take a closer look. I went on to have a Lumbar Puncture and at the end of it all I was told they had found an Aneurysm. After the SAH the Consultant who I was under in Hull had informed me of a small aneurysm that was an incidental find but as it was so small his advice to me was we will just monitor it and see if there is any change which they did for the first year with no change at all. In York when I was discharged they told me they would refer me back to my original Consultant in Hull as he would be the expert in this Neuro field and he would discuss the situation with me. I didn't get referred until March this year and on arrival I saw a different Consultant who I had never seen before. He turned the screen and showed me a rather large 8mm Aneurysm with a daughter sac attached. I was advised that this was a pretty dangerous size and the options available. My initial reaction was to ask if my original Neurosurgeon would take a look and ask what his opinion was as I hold him in great esteem and as this consultant was a stranger and they both worked in the same hospital department it wasn't seen as any problem but I would value his opinion. The original consultant rang me the very next day at home to tell me the new consultant was the person in his opinion to carry out any surgery as it was field of EXPERTISE as Aneurysm Surgery was the only surgery he carried out so I was more than happy to proceed and have the treatment required to get rid of the ticking time bomb laying in the centre of my brain. I was told by the new consultant I would have to wait until July for my surgery after he had looked at his lists so I have been patient waiting for July to come. I went yesterday to his clinic to find out he is leaving Hull Hospital shortly and moving to work in a London Hospital which as you can imagine I was devastated about the news. He looked at the monitor on his desk and told me he would try his best to SQUEEZE me in before he left but there would be no guarantees!!! I feel that anxious now and at a real low with myself as I now feel he will be practising in Hull Hospital during July but I might not get my operation. My initial thoughts are WHY won't I get my operation in July like I was promised in front of my husband and daughter? Who is taking up all these appointments ahead of me? Are they in a vulnerable state and waited as long as I have? It's nearly as bad as finding out I have the aneurysm in the first place!! I'm messaging you to find out if there is anything at all I can do about the situation and when he moves could I possibly go to London for my treatment on the NHS? I don't really know what the hell to do at the moment but it is really troubling me and my family and I don't get upset easily. This isn't a situation of a broken leg or arm where there are several doctors could perform the surgery this is about building a relationship with a doctor who is going to be delving deep into my brain!! I really TRUST this Consultant and as it's only a couple of days away from July I feel now I'm going to be left counting down the days to his departure. I feel so desperate and any advice at all I would be truly grateful for.

Thank you if for nothing else but reading my dilemma

Lynda

randomphantoms profile image
randomphantoms in reply to Lyndaryan1

Please ring the helpline in the morning Lynda.

You could also speak to the consultant you TRUST and ask if he would do your surgery even if you had to go to London.

Please let us know how you get on.

Lyndaryan1 profile image
Lyndaryan1 in reply to randomphantoms

Thank you so much for your reply I truly appreciate it. I was looking for advice about the situation as I feel I have been through SO MUCH already and now I feel as vulnerable as I felt when I was first diagnosed!! I have been upbeat all the way through but this news about him leaving his position has really floored me. My husband keeps going on about me been listed in July and why should the word SQUEEZED in be used like I am getting not the same treatment as every other brain surgery patient? His other main concern it surely he would have to serve notice and the reason every worker no matter what their profession is to cover and finish what they have already started. We have looked on the Hospital Website and his name has been removed from the list of surgeons so obviously this is for him to not be taking on any new patients but surely he should cover what he has started? Its just all one big mess and one big let down. It's shattered me today and I haven't once been upset about any of it but this seems to be so cruel to have a life threatening condition and then to get a couple of days away from the month I was told my surgery would take place to now be told - Not by the only consultant I have seen.

I will ring in the morning and see if I can get any pointers or help to resolve this intolerable situation.

Lynda

Lyndaryan1 profile image
Lyndaryan1 in reply to randomphantoms

Good Morning, I have received the BEST NEWS EVER. My Consultant has got me listed for the 18th July for my surgery so I can't explain the total euphoria I feel after taking a call from his secretary this morning. It was the worst day ever yesterday and now the best news ever today!! Talk about been on a Rollercoaster Ride of emotions!! I think it's bad enough been unlucky enough to have survived a SAH and then 14 years later to get diagnosed with a rather large central core Aneurysm but mine would have to bring another member of the family along having a daughter sac attached??? It could only happen to me. When I got the news of my Consultant moving to a Top London Hospital from Hull it just broke me honestly it was the last straw!! I have been really upbeat and not dwelling on the situation knowing what will be will be and my family have all said they don't know how I've managed to be so calm and not get into any down moments about it but that news yesterday just plummeted me to the lowest I have been. Today and early to get the news the Consultant has personally listed me to do my surgery has given me the biggest lift I could possible have been given. At last I get a bit of GOOD NEWS!! Like I say I truly trust this consultant and London are going to be SO LUCKY to get him. I thank you so much again and I will report back to all the other aneurysm patients on how I get along.

Kindest Regards

Lynda

randomphantoms profile image
randomphantoms

Hi Lynda. That's great news.

When you do report back if you do it in the form of a post many more of us are likely to read it as sometimes we forget to check the newsfeed to see what older posts have been replied to.

Wishing you and your family all the very best.

emmarose profile image
emmarose

Very good about the phone line but think I will use email for now as can think more. Then double check it sounds properly.

Justice2018 profile image
Justice2018

Thank you so much :)

Leonard68 profile image
Leonard68

I had my RTA 40 yrs ago this November, a Doubledecker school bus full of children,knocked me off my motorbike,the force of the impact,pushed my spine up into my skull,fractured my skull,and spine.I then had meningitis, its left me with Grand Mal temporal lobe epilepsy,Diabetes Insipidus, Incontinence, `Severe` memory problems,icepick headaches,Mild form of Narcolepsy, Hearing problems. I have no family or friends,no social life. The last pint of bitter I had,cost me 42p-YES!!! 42p!!!. I get very lonely ,so much,suicidal thoughts are coming back,ANY ADVICE?

Kathykathy1 profile image
Kathykathy1

Just seen a post about aneurysms re growing I had a ruptured one 2015 and coiled did not know they can regrow any information would be appreciated.

14th profile image
14th

My daughter has been offered direct payments to organise her own care in the community. I am quite happy to mange this for her but am concerned that if her needs change it will be difficult to get her reassessed as the social worker will close her case once she is receiving direct payments.

Would you have any advice/experience of this?

Jill777 profile image
Jill777

Its great having a phone number but not so good if no one is there to answer it

headwayuk profile image
headwayukPartnerHeadway in reply to Jill777

Hi Jill, really sorry to hear this - we're experiencing some issues at the moment with a number of the team contracting Covid-19. Can we suggest you leave a voicemail message if we don't answer and someone will call you back? Or you can email with your details to helpline@headway.org.uk

We're sorry for any inconvenience and will certainly do our best to support you.

Best wishes,

Andrew

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