So the 4th of April dads discharge date is getting closer and closer. I was really disapointed to hear that virtually all support stops on discharge...no more neuro psychology no more occupational therapy ....just a follow up app with the consultant in 6bweeks time ! When I asked if we encountered any problems who could I contact I was referred to the psychiatric liaison team (mental health!) my dad isn't mental he is recovering from a TBI (Dec 2015).
We've had 3 over night leaves from the hospital at my house which other than a few teething problems have gone relatively well. However dad wants to go back to living on his own independently which is what I want to however the fact we have no support in this transition is quite scary.
I looked into some private occupational therapy ----- £600 for an assessment then £240 per hourly session!!!!! I mean who can actually pay that!!!!!
So between working and two young children it looks like it's down to me!
Are there any family members that can offer some advice or even tbi survivors who can say what helped them when they were initially discharged?
Thanks in advance
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Keep demanding help. We finally had several months help from the local Mental Health team who were excellent and help from Adult Social Services. It took a lot of effort but there is help out there, be persistent!
It's very scary isn't it. I brought my husband home and was home for 3 weeks before I called adult social care ( local council). I was at my wits end as we had no help at all, I only needed a toilet frame. Luckily they sent one that day said they didn't know we were home, lack of communication. I would advise you to contact your local adult social care team and also your local Stroke team, ours were amazing. Do it now before your dad comes home they will help you to put things in place for him. You will also have a community neuro team which is normally mixed in with other health services, ask your GP, am sure they will refer him.
Contact your local council. We've had fantastic support from both our social worker and the community OT. They helped with equipment, completing the various PIP and ESA forms and have also been great at providing a support package to help me work full time. I realise that not everyone is so lucky with their council but it's worth trying.
Do you have a community rehab place near you? M has physio and OT twice a week. Try googling Livability as that's the charity that runs the centre. He would need to be referred and obviously there's an issue of finance. The other option which would so need referrals and funding are the Headway centres. The plan for us is that Marcus will transition to them once he's finished the community rehab.
I guess it will depend upon how your dad is getting on. M's accident was in Sep 2014 and he spent 5 months in Addenbrookes and then 10 months in a residential brain rehab unit so he has needed a great deal of help and support.
I hope you get the help you need. Let me know if you have any queries that I can try and help with.
Yes frustratingly it is a postcode lottery of what community services are available. For some if they live in a city with a renowned specialist brain injury service in the hospital then the community services are more available. If the services are scant in the hospital they they are minimal or non existent in the community. There are many of us on here who don't get much in the way of follow up or ongoing support and frequently it is the Mental Health Services or Adult Social Care that we get directed too. Their understanding of BI can be extremely limited and as I found for myself they actually disregarded the BI and classed my ongoing difficulties as 'depression'. That proved to be so wrong as the antidepressants exacerbated my difficulties to the extreme!! Also I didn't really fit their criteria as wasn't suffering a severe Mental Health problem e.g psychosis, and so they didn't offer any ongoing intervention at all. However, that's not to say that will be your dad's experience as I think others on here have found the Mental Health Services and Social Care Services a great help. Likewise my bi wasn't caused by an accident that enabled me to claim for follow up care eg neuro psych, OT, Physio etc from an insurance claim. That's the only way some people can afford to have the services they need privately. Likewise I was discharged with very little and came home to single parent a 5 yr old all by myself. I am now 5 yrs on and I am still trying to get some intervention to help me manage my frontal bi difficulties and my GP has tried referring me to several specialist services .......but the referrals keep on getting rejected.
Is there a local Headway Service near you as that would be a great support to you both. Or, I am sorry I can't remember how you dad's bi was caused and can't click out to your profile as will lose what I have typed, but often there are other local service specific to whatever was the reason for the bi eg stroke services etc.
It is so scary and difficult to go from all the interventions that were available in the hospital to very little. I was desparate to get back home to my own home but the impact of suddenly being very alone and then responsible and having to try and manage not only for myself but my young and dependent son, was a huge adjustment.
Did the hospital arrange for him to have an OT assessment at his home to see how he could manage things or was that not done because he was being discharged to you? If that didn't happen then asked your dad's GP to refer to the community OT. They can then assess him in his own home as to how well he can manage. if social care assess as well then they would be able to also consider a care package to do the daily living tasks he can't manage. Sometimes we have to be exposed to the difficulties to be able to accept that life has changed and things need to be adjusted/alternatives found to find a way forward.
Are you scared he will fall down the stairs again? Maybe it's time to consider a bungalow?? Although I guess that will be difficult to get your dad to consider and agree to because our homes often are associated with lots of memories over many years. However, if he is keen to get back to living in a home of his own then maybe he will consider alternatives.
strawberry tried to get me to take citalopram, told him where to stick it and how far it should go..........i wasnt depressed, i was fed up being told what i am feeling.
i see the same doc all time and i am teaching him what he should be asking and saying to a person with a bi, but more importantly listening to them
Like all above have said call Adult social care ASAP. They should have a care discharge in place. I had adult social care performe N assessment, and they should provide a package tailored to your dad's needs. Contact Headway too. Keep persisting, as they should provide care for your dad, and as much as you are caring for your dad your have two young children.
I would be tempted to say to sister/doctor He can't come home until he has a full support at home, and explain your situatuation.. They may see it as bed blocking but you and your dad deserve and need help.
keep an eye out for changes in your dad no matter how small, things like mood swings aggressive behaviour inappropriate behaviour and language to name a few.
its good he has access to the mental health team prior to discharge ,rather than my poor wife who had to go through the referrals process. you may also want enquire whether theres a care package being put in place for him, if he lives alone ( im not talking about physio.
regarding the neuro psychologist, the nhs do a time to talk thing which instead of being 1 -2-1 is a group thing.
be prepared to possibly have to learn to love your new dad, i know im not the same person i was just over 4yrs ago.
the most important thing is to listen to what your dad is saying , dont say you understand , even the docs dont understand because they havent been through it .
find your local headway group, which meets once a month, go along with your dad youll meet people who have had a bi and those who put up with us.
forgot to say i had a frontal lobe bi. i know when ive been naughty because i get told off big time
Thanks Steve yes dad is right frontal lobe also ... He has had his moments already but obviously it's been in a hospital environment. I just worry the real world may be a bit over stimulating and could throw up some issues. But I'm willing to I through whatever t takes.....we know how lucky we are just to have him but I'm not nieave enough to think it will be all plain sailing! 😀
Hi Amy, I thought my father's discharge home from hospital was not well managed until I read this! My Dad received a care package from social services, which was not great, but at least he was on their radar, and a 12 week programme of rehabilitation from a community rehab team - an OT, neurophysio and neuropsych visited over the course of a 12 week period. My advice is to get in touch with your local Headway who should help you to know what is available in your area, and to pester and demand for help until you get it. Good luck!
Yes it's been quite terrible ...but I've spoke with my local (ish) headway today and feeling much more positive about it now....however my dad tells me he is coming home the 1st now not the 4th ....great tht they have told him and not me 😡😡😡
It's interesting you say that - I remember many really exasperating instances when the professionals only spoke to my dad, who had the BI, and was in no fit state to process what was going on, and not my mum, the primary carer on whose shoulders it was all going to rest.
Yes, I could probably have been able to make a sandwich and a cuppa, but wasn't able to tell you if I had taken my vital medications.....I cried when my sister who was staying got cross because I didn't know.....
She organised carers via gp surgery to come in twice a day for several weeks until my levels of responsibility for meds at least was deemed safe enough.
I found the "missing" drugs in the bottom of the washing basket months later!!
Ask tomorrow re community rehab team, get as much preparation done as possible. Call in all favours, call stroke association...can headway come to visit you on Friday? X
I have had access to wonderful support from a community neurological team. In addition to home support (still ongoing), I had the opportunity to attend a group recently. Transport is an issue for me to get to my local Headway group, but I hope to go there when I'm better on public transport. Stroke Association, Age Concern and your local Council Adult Social Care are all organisations you should contact. If all else fails, go to your own G.P. and tell them you're unable to manage your father's care, and ask them to sort out referrals for him. Good luck. It's is a postcode lottery it seems.
Yes it seems it's is very much a postcode lottery and we seem to be in the wrong post code...however our local headway group have offered us some support today so that's great....if contact your group as they offered to arrange a volunteer to pick dad up and take him to meetings maybe that's something your headway group may arrange
Yes I've been in touch with them - and yes they agreed to met me nearby to 'walk in' together. It's three bus rides away - about two hours due to timetables - and OH would gladly drop me over but he's doing so much already, I'll give it another month & then go along. Good luck with your dad
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