Brain haemorrhage (ABI) medical care expectations

[RGB52]

I am new here, posting as carer for someone with an acquired brain injury.

My wife suffered a brain haemorrhage in February of 2022 and has not fully recovered. Unfortunately, we are finding it very difficult to get information about her condition from the hospital that treated her.

It would be very helpful for me, as her carer, to get a clearer picture of what care we can reasonably expect. For example, she was supposed to have a cerebral angiogram 6 months after discharge, but that took more than 9 months to get. That was 2 months ago now, and so far we have not been briefed on the results. Is that normal?

A meeting with the consultant that was scheduled for this month, that is, 12 months after the haemorrhage, but at the last minute it was pushed to June. When I queried this we got a new date, in April, but still a long way off when you are living with no clear picture of what the prognosis is. Meanwhile she is experiencing a range of distressing symptoms that may, or may not, be related to her ABI.

Her GP surgery have shown no interest in her situation. It failed to follow up on the consultant's instructions to monitor her Haemoglobin and treat appropriately.

No meeting with the consultant until more than 100 days after the latest scan seems wrong to me.

I realise the NHS is chronically under-resourced and drastically under-staffed relative to demand. But I have to get my wife the care she needs. Is there any way I can move things forward, or do we just need to learn to live with this situation?

Any input and advice much appreciated.

User RGB52

[RogerCMerriman]

I’d try Headway helpline who I’d assume would be able to give idea of well if things are happening in a timely manner or maybe other avenues?

[JHN62]

It won't replace the medical appointments or care needed, but I do recommend you visit the online group "Behind the Gray" It is specifically for all brain related injuries & was a huge reassurance for me & my family following mine - when we also struggled to get any support from elsewhere! It is still early days for your wife's recovery, the brain 🧠 requires months/years to adjust and heal. Don't be disheartened and be prepared to welcome a 'new' version of your lady into your life. Take care xx

[skydivesurvivor]

welcome to our world!! Sure tougher these days, al I can offer is this is a wonderfulsounding board! Vent all u frustrations here, get support from others in simpler circumstances. A strangers words can be very helpful at the times am sure u now going through!! All I do is SMILE to spite my frustration. Hops have been help! Keep in touch with site would love to hear u news

[BeeYou22]

Hi RGB and welcome! Although I can't comment on specific medical situations I can tell you that Headway are invaluable for support, information and expertise so please contact your local Headway and share with them. They have and continue to help me enormously and I had the privilege to attend the Headway Conference at Taunton Racecourse yesterday and connect with top neuro consultants, speakers and organisations who are determined to do better for people with brain injury. Everyone here is so supportive so I hope you find that support for you, your family and your wife. Keep us posted! x

[Suziewong15 in reply to BeeYou22]

I wish I knew that was happening yesterday. I too live in Somerset and would have attended as my husband has suffered two brain injury’s during the last 15 years, he is now in a lovely nursing home in Langport as he has TBI acquired dementia and struggles every day thinking there is nothing wrong with him. I struggle every day not being able to care for him. This site is invaluable to anyone with a loved one who’s had a brain injury.

[BeeYou22 in reply to Suziewong15]

Hi Suziewong... oh bless you, my thoughts are with you both 💜 Please call Headway Somerset office on 01823 618519 and mention that you saw my post on here and ask how they can help, because they will, they are awesome. My initials are MB so I think they will know who is posting! Hopefully you will get the support you need for both of you. They also have a Supporters Online Group run by Wendy Copeman which may help you to cope and understand what you are both going through. Here's the web page with the contact details:

headwaysomerset.org.uk/news/

Keep us posted x

[Suziewong15 in reply to BeeYou22]

thank you that’s really kind

[skydivesurvivor in reply to Suziewong15]

have been through the same, keep going!! U doing a very unthanked, appreciated wonderful job!!! Come back to this site whenever needed. Hope u find support here!! Good luck wonderful person!!

[philcollis]

brainandspine.org.uk/suppor...

[Unusual1]

Hi RGB52. I think you might have a legal entitlement to see your wife’s medical records? You could write a letter of complaint I did this for my mother as her appointments were taking so long and she got bumped up the list. It has to be an official written complaint though. Think about getting financial and health power of attorney as this will allow you legally to advocate for your wife. Have you got any children that can help you with this?

[Unusual1]

just to add: when I wrote the letter of complaint for my mother I told them that her condition is so bad I feared she would drop dead and if this happened I would take legal action against the nhs due to extra long waiting times. I think the waiting time the nhs have to see you is about 16 weeks. Double check this though. I also told them that I was considering, due to the excessive waiting times, to take my mother private and send the bill to the nhs. She attended her appointment at the nhs two weeks later.

[Janner123]

I would definitely recommend going to a headway carers support group, they have one fairly near me once a month and I went for the first time yesterday. It was so nice to be able to talk to people who really understand

[Life-Goes-On-2021]

Hi there. Sorry to hear of your situation. It is hard and I can only speak from my own experience- you are reasonably abandoned medically once things are no longer acute. For whatever reason, being on the receiving end is frustrating in the extreme. Many sources of info have already been covered in people’s replies and I have definitely found them useful on my own journey.

Only thing to add/reiterate is that it takes a long time to rehab and that’s not just physically. Mental health was key to me after 9months or so - finding the ‘new’ you and your own worth can be a minefield and often influenced by many ‘unseen’ factors making the situation hard for caters/friends/etc.

Time is a great healer but also a massive frustration as it passes! The medical world I feel doesn’t express itself well wrt abi and you are left high and dry somewhat. Yes medical problems need to be addressed but they can’t rule your life else you end up in a holding pattern! I have learnt to progress me over the years (4+ now). Yes it’s frustrating and I have waited for an angiogram since last April to be scheduled, but as I am no longer an ‘emergency’ it’s not prioritised.

We are all individual so the emphasis on the ‘medical’ for the solution or answer to ‘what do I do next?’ can be of differing importance, but I know that if I had let it ‘hold’ me until x,y,z was sorted then I would still be in a wheelchair today.

That’s not to say it doesn’t matter! Just don’t hold your breath. Focus on getting other things tackled too and it’ll all help progress. Good luck!

[BeeYou22 in reply to Life-Goes-On-2021]

Well said! Mental health support is vitally important along with support for the physical effects of brain injury 👍 I am also a volunteer for Mind Somerset and I'm working hard to encourage a collaboration with Headway as they can't be separated in my view. It can be hard to implement with all the practical issues for each of the organisations to merge but I am going to keep speaking up and fighting for the best support for all of us x

[RGB52 in reply to Life-Goes-On-2021]

Appreciate you sharing your perspective. Very helpful.

[cat3]

Hi RGB. I had Subarachnoid haemorrhage 11 years ago which was treated successfully with endovascular coiling. I had an automatic follow-up with my surgeon three months after leaving hospital, then was discharged into the care of my GP who, sadly, was clueless about brain injury after-effects.

But my consultant had warned my family that surviving a haemorrhage doesn't mean 'recovery' in the true sense but generally results in a markedly different life, and with possible new ailments or deficiencies. The commonest seem to be poor short-term memory, headaches, raised emotions, balance issues and cognitive problems.

Here on Headway we refer to the issue as 'Accepting The New Me' ; most of us have been through the difficult process of letting go of who we were previously and of our past expectations. This naturally impacts on those closest to us. I'd say I reached a tolerable level of acceptance at around the 2 & 1/2 yr stage.

As others have said, Headway has a wealth of information on all aspects of brain injury. You can access this from their website or they can provide printouts for you to refer to at home. Their tel. no. is freephone 0808 800 2244 on weekdays.

If you have serious concerns about poor treatment, the PALS service are excellent at intervening on your behalf in a diplomatic but effective way. If you Google them you'll find contact details for your area.

My best wishes for your wife's improvement and better days ahead. Cat x

[Phoenix_Faith in reply to cat3]

Hi Cat and everyone - I decided to join this community because I sometimes feel terribly alone and isolated with my symptoms, even though other people don't seem to notice them and think I'm still 'me' .... which actually makes me feel even more isolated! I had a subarachnoid haemorrhage from a ruptured aneurysm in November 2020 treated with endovascular coiling, and in January 2022 I had gamma knife radio-surgery for an AVM (arteriovenous malformation). Most of the time I feel very much left to my own devices with my symptoms, and from the medical viewpoint I am told I'm doing really well, so much better than year ago etc etc. I am reassured to read that I'm not alone in how I feel, although I'm so sorry that anyone has to feel like this! I have chronic dizziness (I have been given a diagnosis of Persistent Postural-Perceptual Dizziness, with no reason to believe it may lessen although I still do physio, not sure why!), balance issues (although apparently not severe enough to be eligible for a clinical trial, which I suppose is a good thing!), nausea and vomiting, the latter usually in the mornings. I have been advised to live my life as fully as possible, and to distract myself with activities and engaging with others. I have been able to go back to work, but frankly just getting up every morning feels like a huge challenge! While I was still very unwell I rang Headway. I explained my situation, and said that I had lost 3 stone while in hospital and was still unable to keep anything down, other than chocolate (weirdly). The only thing I remember was being advised to eat less sugar as it was bad for my brain. I'm afraid that put me off and I haven't engaged with Headway since then. However, one of my medical team suggested it would be worth trying again, so here I am! Goodness me, this is far too long a post - sorry about that! Thank you for bearing with me and best wishes to all - Faith

[cat3 in reply to Phoenix_Faith]

Welcome back Faith ; I hope you'll stay around this time. My main issues since the SAH have been impaired memory, poor balance, erratic emotions and intolerance to excess stimulus (noise, chattering tv ads, people talking for too long etc..).

Aftercare is poor for most of us once we've survived and are walking & talking. I still feel regret for loss of my once dynamic self, but this forum has been a great source of consolation over the past 11 years.

Have you tried an ENT specialist for your dizziness ? They helped my BPV enormously.. Take care m'love x

[Phoenix_Faith in reply to cat3]

Thank you so much Cat. Your issues sound very challenging but it's wonderful that this forum has brought you so much comfort. I must say that I feel quite a lot better for having joined it, especially after reading your lovely reply! I've been advised not to dwell on my past self but to remember how far I've come since the SAH. I think that is excellent advice, but so much easier said than done! I have a neuro-otologist (who diagnosed the PPPD, aka 3PD) and have another appointment in June.

In the meantime, during a rare bout of proactivity, I asked my local pharmacist whether he could recommend anything for my nausea and he advised me to see my GP. I eventually managed to get onto eConsult (one of the many post-pandemic challenges we are all having to navigate!) and have just been prescribed prochlorperazine (aka Stemetil I think), which the GP says may help both my nausea and dizziness. This will be followed up by a telephone consultation next week. I don't like taking medicines unless I absolutely have to, but it seems daft to me not to take the help that is being offered. The concern is I might perceive this as some kind of 'magic bullet' that will 'cure' me, so I'm trying to manage my expectations! I will definitely keep your ENT specialist suggestion in my back pocket though - thank you so much for that.

In other proactive news, I collected a sunflower lanyard at lunchtime. I don't know if it is widely known that this represents invisible disabilities (and I don't know how I feel about labelling myself in that way), but if I'm feeling dizzy on the tube I'm hoping it might encourage someone to offer me a seat. Although as it happens, I'm finding people are really lovely and offer me a seat without my having to ask. I daren't ask them why they think I need one!

I remember being advised not to dwell on my past self but to remember how far I've come since the SAH. I think that is excellent advice, but so much easier said than done! I know I am very lucky to have recovered as well as I have, and I know I'm being ungrateful for focusing on the things I can't do rather than those I can.

It has helped me enormously to share all this with you, and hopefully others on this forum too. Many thanks again Cat, and wishing you all the very best - Faith x

[cat3 in reply to Phoenix_Faith]

Your words resonated with me Faith. Prior to my SAH I used Prochlorperazine for many years, for both vertigo and nausea, and it was a life changer for me. It's been the go-to drug for vestibular issues for decades (mum took it for 40 yrs !) and I hope it works equally well for you.

None of us likes to label ourselves with incapacity and I guess the lanyard could feel like a step too far commitment wise. But if we all wear them with pride (making invisible issues more visible) then it's no bad thing.

I recall returning home from town on the metro with my daughter ; she'd been furniture hunting for her new house and I was pretty shattered. The tram was packed and Helen & I stood holding the rails until a young woman asked me to take her seat. Later I asked Helen "Do I look old or something ?" and she replied "Of course not, but your expression said you were hanging on for dear life !"

We can speak volumes without saying a word....so please do wear your sunflower as back-up ! It can provide a question mark even if folk don't recognise it's meaning.

Take care Faith, and do keep in touch.... 😉

Cat x

[Teazymaid]

I’m sorry to hear of you lack of help but unfortunately it seems to be to be normal now and has been for a long time .. I don’t have any advice for you myself but you have come to the right place this is where I got the most information , help and support from people who actually so know .. I’m sure you will get some good advice from people who care best wishes sue