I am going to be part of a focus group being set up by my husbands Brain Injury Team.
They are looking for input from families to see what would have helped them at the hospital at time of admission and also at/after discharge.
Also aftercare, which at time of my husbands was nil! Apart from follow up checked his head yup scar healing see you bye done!!
I would be grateful if both family members and anyone who is living with brain injury could let me know what help they would have liked to have had/see being given in the future.
Thanks in advance
Tia
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Tia-01
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Hi Tia. I have a neurological illness that is ongoing. In 2016 it caused me to have a 'stroke mimic'. After discharge I received monthly visits from a care in the community team who were brilliant. I truly believe it is thanks for them that I am back to being almost as I was before (I had left-sided weakness so initially couldn't walk or move my left arm). I'm not sure if I got the help because they thought I had had a proper Stroke though.
Thank you for replying, I am glad you got the care you deserved to have had.
If my husband and other brain injured got follow up appointments like that then it would make a great difference. My husbands Psycologist said if he had got help after his TBI there would have been a better chance that his brain could have been retrained to a certain extent but because so many years had gone by this was more unlikely to happen. Which unfortunately has proved true.
My family have spoken to me a lot regarding their experiences when I had my accident. They really would like me to pass on their information.
So my accident was January 14th 2019. I simply fell down my 12 stairs at home. It caused a massive traumatic brain injury, broke the base and most of the right hand side of my skull, subarachnoid haemorrhage and blood clots. My 10 year old daughter found me. She woke my 14 year old son and said “Mummy’s dead at the bottom of the stairs.” My son knew I wasn’t dead because I was breathing. They phoned my parents and an ambulance. Paramedics said I would probably not make it to the hospital in front of my children. Then they said I would not survive the operation. Numerous times they were told I would die. Then in front of my children they told my family to find a care home, I would never walk, talk, know who anybody was or have a memory. My family really struggled to cope. My children went through hell and came out the other end. My family even visited a funeral directors because medical professionals were adamant that I would die. Nobody ever asked my family if they were coping or offered any positive information. They did not even take time to just phone and let my parents or children know I had regained consciousness. Thankfully When iI regained consciousnesses I was confused for 12 hours but then I was right back to the person I was before. But they kept telling them to expect the worst and expect me to relapse in a completely personality changing way. They even said I could relapse to a completely vegatatiVe state. My family had been told so many negative, frightening things that they could not relax or spend quality time with me.
The Neurologist did not want me to be released from hospital. But on the 14th of February I demanded they let me self discharge. My mum told them “if you don’t let her go she’ll just walk.” So they did leave me leave, but Mum told them “I know Vikki and she will walk and that’s nothing to do with her injury, I know how determined she is.” The Doctors kept saying that head injuries can change the persons personality but luckily my family know what kind of person I am. Luckily for my family I proved every medical professional wrong. I am now exactly the person I was before my accident. My entire family can’t even believe I’ve had such a life threatening accident. Finally they can relax and just get on with their lives. They have all said that they wish the medical staff would have just listened to their genuine concerns instead of simply saying “she won’t survive so don’t even think about that.”
I wish you peace, happiness and a whole lot of luck.
Your story is very similar to my husbands he also fell downstairs in our house my kids 6 and 9 at time and was my 6 year old who ran to a neighbour for help as I was at work.
I can’t believe that the staff at your hospital spoke to your family the way you did that’s just awful 😩 negative all the way and for paramedics to say that in front of your children beggars belief.
Thankfully you have come out the other end of your accident, proved them all wrong and have not had any personality changes.
I found the lack of follow up care a real struggle there was just nothing! No contact to see how you are coping. Nothing for my children to help them cope with their new dad, I had to do this all by myself with the help of books by headway.
My husbands accident was 11 years ago and I’m finally getting help but saddened to hear no changes have been made at hospital re communication for the family of brain injured. This needs to change.
Thank you for replying to my post, wishing you and your family all the very best for the future.
The only sort of input my children received was laughable. So because I am a single parent, the hospital asked social services to make sure I was competent to have the children alone! Believe it or not even though they agree the children are in a safe environment and are very happy. They will not get lost until we have all had a family conference. Even after this there is no follow up help for the children or my family. Everybody just disappears! Don’t know why they got involved in the first place, my family would never allow my children to be at risk. But nobody bothered to ask them.
I really wish you luck with your input with the focus group.
Points that I will be raising as I had 2 young children zero input it’s a disgrace just leave you to figure it all out by yourself.
I am not in the least bit shocked about the lack of input from social services time for big big changes.
I eventually got help for my husband but we’re talking years down the line when I was at breaking point. Fr was great and did referral for my husband had input now from brain injury team 5 months now. Unfortunately there was no team like this years ago.
Big changes needed too many people let down.
I hope you get conference soon and get your family to push for you too.
More support for families ..... my daughter had a serious RTA and was left with a severe brain injury . No one understands unless they've been through it . You need time to grieve for the person you've lost but there is no time because your learning to cope with the new way of life . I'd like to be able to talk /spend time with other families dealing with brain injury . There is plenty to read but no one to actually talk to face to face ... maybe the hospitals could have a family support team to ease the journey from ICU to rehab to home . This would have made such a difference to my devastated family . I no I'd like to support others and share personal experiences so they dont feel as isolated as I did .
Thank you for your reply.Yes the lack of support is a big one alongside no follow up care.
It’s just as you say you need time to grieve for the person you’ve lost but can’t because you are trying to cope with the hand you’ve been dealt. Having 2 young kids they too trying to come to terms with their new daddy, his total change in personality his rages. Juggling school, clubs and eventually work. I had to fight for rehab too phoning the hospital constantly to get referral done. Very hard and tiring. There was nothing for me nothing for kids and most importantly no aftercare for my husband.
Time for big changes and hopefully once the brain injury team get focus group up and running all they will make a difference. 🤞
My partner had a massive stroke on the 29th June 2020 and has severe expressive and receptive asphasia so cannot speak or understand and is paralysed down his right side. He is currently in rehabilitation but it has all come to a standstill as physiotherapist cannot show him he needs get to understand and he cant. The speech therapists cannot find any reliable way of communication. He is going to be moved to 24hr care as he has no sense of any danger, he will try to stand and walk by himself which he cant. I am completely gutted
He is only 52 years old. When I visit him (daily) he is becoming increasingly upset which is making things even harder as I feel it is my fault but i understand that i am the link to the life we had before and it is obviously devastating , very scary and upsetting for him especially as his understanding is so limited so it is hard to be able to explain anything to him.
I'm more than willing to help with anything ,help support other parents talk about the experiences. I no I would appreciate someone to talk to who has been in the same devastating situation .
You are so right nothing is given freely and this is what needs to change sooner rather than later.
No info given nothing I too had too push hospital for referral they admitted his files had been put into archive forgot to refer him was total nightmare. Having 2 young kids at time I didn’t know whether I was coming or going. Was mentally and physically exhausting.
Hi, as the sole carer for my partner (he has parents, they refused to accept what was happening and I am still having less than no help from them.) after he had a bleed on the brain back in December 2018, I would have liked to be consulted more about his treatment and for the doctors to have made an effort to seek me out and update me. Due to other commitments I couldn't be there when the doctors made their ward rounds in the morning and visited my partner in the afternoons and evenings. Literally every day I had to seek out a doctor and ask what was going on, same for physiotherapists and other medical staff. Each time I was greeted with words along the lines of "well, we've told John" to which I had to reply that he had had a bleed in the area concerning speech and memory, he can barely speak or remember what went on 5 minutes ago! It was a most frustrating time and I felt I had to fight everyone in order to get any sense.
As others have mentioned, the lack of support following his discharge was also disheartening. Just to be given some idea of what to expect would have been helpful, also some guidance about where to go for help would have assisted. I only found Headway after a Google search!
Luckily, he has gone on to make a near perfect recovery and we can laugh about it now, even the fact that he occasionally mixes up words, remembers nothing of December and goes to bed at 9.30pm, like an old man!
Reforming the benefits system to speed it up and remove incompetence would also help, but that may be beyond the scope of your team!
Communication-lack off yes a nightmare. I too sole cater no help as his family in England we in Scotland but his mother not great health. Two young kids not easy. No after care everyone says this just left to cope!
I knew about headway but down to one of my husbands colleagues (paramedic) and was her who told me about rehab and to push for it unfortunately hospital made a big booboo of that and I had to keep calling pestering everyday to get referral done!
Oh ho don’t start me on the benefits saga they are in an tree mess my battle with them unbelievable I fought and fought and eventually got and win esa and pip for him
ESA if I hadn’t pushed them to put my form through system he would have got nothing I argued with them that yes even though self employed he is still entitled to it. Person I dealt with just said well we will see. Got it by pure persistence as I knew I was right.
PIP 😡🙈 hope never have to go through this again for a while well they say 3 years but things unfortunately will only go in one direction for him and that’s downward.
It’s a wonder I’m not bald by now!
Wishing you all the luck on he world with your husband.
This is a great wee forum to express yourself let off a bit if steam lol 😂
Hi Tia. I suffered a negative subarachnoid haemorrhage in May 2018. After 2 weeks in hospital, I received no ongoing support and was just left to “self heal”. A year down the line I am still suffering lots of problems which no one seems to believe. I wish I had received support and advice but had to go online and talk to others. I have slow thought processes, fatigue and dizziness and would give anything to have one day where I feel normal again. So unfair
Trip to drs ask for extended appointment and take someone with you who can back you up re your ongoing issues. Have a good cry - tell him/her you need help you are desperate and ask for a referral to community brain injury team. I was told this team was set up here in Scotland in 2012 unfortunately 4 years after my husbands traumatic brain injury and even at that I knew nothing of it until last year when I was at breaking point with him as he was in a state of depression and with that in his cognitive issues life was not a dream but hey it’s taking a turn still s lot to go but his mood is coming up by the help of team getting him out and about and involved in a wee men’s group.
I hope you get some help soon and it won’t be before time.
Thank you darling really appreciate your response. I have the best gp in the world. Unfortunately it’s everyone else that don’t believe me especially my employer and benefits
My husband badly let down by his too the caring profession 😫 couldn’t back up one of their own that gave many years service saving others lives very sad.
Can he not back you up with a report as evidence?
I hate this rubbish benefits system it really makes me mad 😠
Thank you everyone for taking time to tell me your experiences I am going to write a long list for my husbands speech therapist who asked me to take part in the focus group it’s the same points that is coming over with everyone affected. Lack of communication at hospital, no aftercare, no help for families. Benefits let’s get this changed I know it’s going through at the moment where hidden disability if taken into the criteria which is a pure joke as it stands and also your doctor/health care have a big input in this. Not before time!!!
Thank you 😊 here’s hoping changes will be put into place very soon 🙏
Research like this is much needed, I would like staff to have spoke to me while during admission I hadn’t a clue about tbi so when my partner kept absconding due to agitation and confusion their was no rational given behind this just a phone call home. More immediate education on BI about what the future might hold how difficult relationships are how behaviour might alienate friends/family, emotional support for partners and children is a must, My children and I just got on with it however behaviours moods and temper from partner has had a detrimental effect therefore could implicate future clinical imput. Avoidance of carer burn out . More emotional support for patients and immediate input from clinical psychologist on discharge continuing for life even if monthly/ sixth monthly etc. To check in. Many are discharged asap and are too embarrassed/ proud to track for help.
I just hope the input I gave them helped, all the points you have brought up where in my long list .
My children also completed a question and answer for the focus group too, how it affected them and what they would have liked to have seen put in place for children and families. The group is hoping to receive government funding to get more support put in place for brain injured and families affected by brain injury. 🤞
Follow up appointments just didn’t happen my husband had one just checked scar and that was it - done
I’m looking at subjects related to TBI for my dissertation searched the effect if frontal lobe injury on the mental health of patients children but haven’t found much research if anyone knows any different would be greatly received. Or any other ideas related to mental health and brain injury.
How about headway would they not have anything on this? You could contact them and ask and if they don’t perhaps they could point you in right direction.
What was the outcome of this report; is this still ongoing, any links to what lessons have been learnt, what ethical practice from national bodies needs to be addressed.
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