Discharge Meeting

[Paulsprogress]

Morning

My husband and I have his discharge meeting on Friday 8th January with the hospital team and community neuro rehabilitation, any top tips please on questions to ask and important points to consider so we cover off all the important aspects of getting him home as supported as possible?

He has severe diffuse axonal injury so is still very dependent on being cared for in most aspects of his life.

Thanks in advance

[Marnie22]

Hi. If you are in the UK, phone the Headway helpline on 0808 800 2244. They will definitely be able to help you with all of your questions. All the best. 🙂🌸

[Paulsprogress in reply to Marnie22]

Thank you Marnie, I am speaking to our local Headway rep at the moment so good call!

[Marnie22 in reply to Paulsprogress]

Very pleased to hear that. 🙂🌸

[AndrewT]

Dear Paulsprogress,

I don't know your exact circumstances, so it Is 'a bit difficult' to comment exactly BUT DO make sure that ALL, the Parties Present- Doctors, Social Workers, Key Workers, District Nurses, along with ALL Staff involved with his care.... Understand EXACTLY his Needs. If, for example, Paul needs 'Support' Specifically At 3am... Make sure that this IS Noted Down. (equally if he has the 'tendency' to call out "Sausages" at 2am.....)

An example, from a holiday that I was on. Another 'Guest', in the Holiday Centre, had made the 'Booking Staff' aware, that he was, ordinarily Got Up- and put into a chair- at around 4am. This man had therefore 'Requested Assistance', at this time. However, somewhere 'along the line', Nobody had actually 'Told' Night Staff about this. Although, in that particular case, the situation was Quickly Remedied I wouldn't 'Rely' on it.

If you can get a 'Word In The Ear', of Paul's Care Team- in advance of The Meeting, all the Better. The Hospital's own Social Worker is a 'good' resource too. If you, haven't already Done So, make yourself 'know' to him/her.

By all means DO Speak to the Headway Helpline, as Marnie has suggested. Above all I, indeed ALL of us, Sincerely 'Hope and Pray,' for Paul's Recovery. Very Best Wishes and a

Happy New Year 2021

AndrewT

[Paulsprogress in reply to AndrewT]

Thank you Andrew, lots of good advice in your response that I will use in the meeting and going forward

[Shreds]

Hi, when I came home from ICU, we were sent a girl who listened, then sent a report and conclusions that was no different to what I told her were our analysis and conclusions. Both myself and my wife agreed it was pointless having her back. It was only then did we discover she was a fully qualified doctor. Similarly when I had a relapse whilst in conversation with an OT, it was my wife who contacted Headway and she asked what to do. Top marks to Headway helpline.

So do be aware that whilst there are some brilliant people (for whom I am very grateful), there are many others who either dont have the relevant experience and support or training or are probably in the wrong job.

In hospital the best were the neuros, the aneathetists and bizzarely, the cleaners.

But do get as much help as you can. Then analyse their experience and relevance to your case. (And whilst you probably wont ask what degree they achieved, sometimes someone who can relate theory to practicality is better than one who is all theory. League tables for surgeons are equally flawed. Those who are most experienced may be given the most difficult cases, so their ‘success’ rate may be lower than someone new being given all easy cases that have a higher chance of success.

So dont be ever afraid of asking awkward questions.

[Shreds]

Just reread your post and recognise now the cause.

Having cycled for many years, I would say that fitness can certainly aid general recovery.

In fact when my driving licence was briefly revoked due to TBI (not cycle related), I found great solace in being able to regain fitness and freedom.

I unfortunately know rather too many who have sustained head injuries though. I was warned against hitting my head in any way, but felt safer on a bike than walking initially! You may feel differently though due to the accident and I respect that we all have opinions and concerns that may not be parallel.

One way that others and myself have dealt with the situation though is by adding an extra wheel. (Trike) Much more stable especially in winter and unlikely to fall as with a MTB.

There are grants available to buy such machines and talking to the MD of one such company, they advise that a fair proportion of sales are to those who may have medical or balance issues. Many specialist dealers are well versed in assisting people with medical issues and I would suggest you ask around for local ones to you. (I might have suggestions but will not ask your location for obvious reasons).

Best. 👍