Post Cerebral Abscess recovery

[Tomos0608]

Hi

I am looking for some guidance, help or support suggestions.

My father in law last May collapsed with stroke like symptoms with weakness in his right side of body in arm and leg, slurred speech and confusion.

Whilst in our local hospital, after doing a CT scan, the initially changed their diagnosis to a secondary brain tumour. Following further scans over the next few days, a biopsy and finally a burr hole procedure to remove the fluid, it turned out he had suffered with a brain infection.

He was placed on strong antibiotics for a number of weeks and placed on anti seizure medication (which he continues using today - Levetiracetam 1000mg a day).

Physically he was back to being fully mobile, including doing light sports, within 2-3 months, however he has suffered a number of seizures / episodes since.

He lives alone, and is / was fully independent.

The first two he had a full seizure, and the last few he just displays stroke like symptoms (loses his speech first, then mobility in right side of body), a bit of confusion, but within 8-10 hours he is generally fully back bar his speech which can take 3-4 days to fully returned (he knows what he is trying to say but it just wont come out).

For my and my wife, as his only immediate family who supports him, its been a very stressful time. He has had to stop working as we believe the focus it takes to undertake his previous profession was causing his episodes.

He can no longer drive, he cant work, he has lost a bit of his coordination (so no more climbing ladders to clean the windows etc) and after any episodes he has to stay with us for at least a night and for the following days he really needs to avoid doing anything strenuous.

We are now paying a weekly fee for a life line bracelet which he wears.

We are really struggling though to find any sort of help - neither NHS / Local Authority etc have offered anything and he appears to not be entitled to anything financially.

Has anyone got any advice on organisations we could speak to, or if he should be entitled to any support?

Is there anyone else out there who has had a similar medical experience and can share how they have recovered / moved on in life?

He has been referred to a neurologist now, however apparently its a 15+ month waiting list and he was only referred spring time.

Thank you

[moo196]

Find your nearest branch of Headway for support and insist he also gets community neuro rehab appointment asap .Both were missing from my "care package" when I was discharged from hospital. Both 100%invaluable.

Sorry I can't write more for now. These are the best ☺️

[Butterfly28]

I’m sorry to hear about your father in law. I’m afraid it’s not always clear what help is there and a great deal of patience is needed.

Headway is a very good starting point.

On the financial side have you tried speaking with Citizens Advice Bureau? If he has had to give up working he might be entitled to employment support allowance- this will depend on his financial situation but it’s definitely worth asking about. They will also help fill the forms in as well as advise what else he might be eligible for - possibly a PIP.

I hope you are able to sort something out for your father in law.

[Hidden]

Hi Tomos.

The spelling of your name suggest you may be Welsh; it that right?

If you/ your father in law live in Wales the system for the NHS treatment and care is different from the other nations.

It makes a difference to how you approach getting help.

[Tomos0608 in reply to Hidden]

Yes, well spotted - South West Wales

[Hidden in reply to Tomos0608]

Ah, Ok, I'm originally from West Wales but live in North Wales now. The health system in Wales for neurology is desperate compared to England but you may be in luck. A while back one of the members on here called Haverfordwest shared some info about a neurology center in Port Talbot. It seems you just have to ring them and they'll help you get a referral somehow from your GP

healthunlocked.com/headway/....

You father in law's brain injury is very different from most of us because it's not a stroke and not a TBI, it's caused by an infection. There may be very different causes and manifestations of symptoms from the rest of us. Ask the GP if he has been referred to see a consultant neurologist that specializes in this field. The reason why I'm saying this is because I had a TBI and I was initially sent to a neurologist who specializes in strokes and he did not have a clue about TBI's.

It might save you time later on if you have to switch and find the right person.

Some NHS info on infections

nhs.uk/conditions/brain-abs...

On the financial side put in a claim for universal credit at the same time put in a claim for disability but make sure you get the CAB to fill it in because they know how to word it properly. You've got medical evidence so that should not be a problem to get.

If he does not qualify for any money you will still need the disability part because this means he can be registered as disabled.

Once he is registered as disabled he can access help fom the 'communities solicitor' for free (think this only exists in Wales). What the communities solicitor will do is make sure the NHS and Council provide everything that he is required to have in the way of care etc. A solicitor knows how to do it and it's easier than trying to fight the system yourself.

Here's a link to the one in my area, if you phone them ask if they have a branch down near you, if they don't ask if they can recommend one, it may save you time.

julieburtonlaw.co.uk/contac...

[JPBeeves]

find your nearest cab , headway ad ask for some support, but I would like to say , headway support is a postcode lottery.

Also try your local council as they should have some support and help for you.i think it’s community plus.

[oobie]

Hi, I follow Epilepsy Action and The Epilepsy society. They have advice and online stuff. Your GP can also refer an Epilepsy clinic - they act in between GP and neurologist. I am on the same medication and have only had minor episodes since 2021 when I was diagnosed. My SAH was 2005 but I had seizures in the past. They may need to alter the dose or what medication he takes. Sorry - not much help but the two epile[psy charities and Headway are all fantatstic. I also had great support from the epilepsy clinic.

[Tomos0608]

Thank you everyone for the replies, really did not expect such response.

There does appear to be a local Headway in the county next to us, whilst it says it services the locals of that city its only about a 25min drive so we may get lucky.

Financially we were told as he has passed state pension age he isn't eligible for PIP now, and we were told that as 'most' the time he is fully independent he wouldn't qualify for Attendance Allowance (all be it we are going to try anyway). Failing that we do have local CAB so we will definitely visit them.