Community Neurorehab Team

[Loveblue123]

Hello, I was wondering if you could share your experience with community neurorehab teams or give any advice on the services which have been the most help to you. My 32 year old son is one year post TBI, his accident took place in Cyprus where he was living at the time and, for a variety of reasons, has only just moved back to the UK. We have a telephone assessment with the rehab team early this week to chat about which services they may be able to provide. It sounds daft but I'm feeling really nervous about the call! He has made good progress and his main issues are depression, fatigue, cognitive issues including short term memory loss, concentration and decision-making. He also has mobility problems with walking and with the use of his right hand. Our main aim is for him to reach his full potential and hopefully return to some sort of work. We are aware that there is a long waiting list for treatment. Any advice would be much appreciated!

[Blu37]

Hi Loveblue123

I had the rehab team they did a telephone assessment then I had to wait about 3 months on the waiting list , occupational therapist came out and assessed me as if I had just climbed out of bed in a morning and what I did during them day to get ready and make lunch , they were very good and put things in place like shower chair handrails etc . Physio came out and helped me get more mobile , all this was last year . I have only just seen the clinical physiologist 1 year later to assess my brain , I did a serious of test for them to see what areas I struggled with my memory, I have short term memory and they also have put things in place to help . I contacted let’s talk for help with depression. Hope this has been helpful

[Loveblue123 in reply to Blu37]

Thank you this is really helpful, it sounds as if they have been thorough.... one year wait to see the psychologist is just awful though!

[Blu37 in reply to Loveblue123]

you are welcome hood he gets all the support he needs just push to get the best for him , the clinical physiologist was worth the wait she has helped me to cope better and try to adjust to the new me , I cried doing the test as thd okx ne would have smashed them but at least I know about the new me just have to try and accept her . Wishing you and your son all the best x

[Loveblue123 in reply to Blu37]

Yes, from what I have read on this forum getting to know and accept the new me can be a long, slow process. Really hope you continue to make progress xx

[Pairofboots]

Hi Love, unfortunately it is a postcode lottery as to whether you get an effective service.Shortly after leaving hospital the rehab service was there, well linked to other disciplines. That was there for me until I moved. I expected to just slip from one service to another. How wrong I was. There was no service in the area I moved to, no long term support, they seem to only have crisis services.

Despite that you have to be prepared to scream and shout, don't let them forget about your son. It sounds like your son has similar problems as I had (and still do in some areas). I used to work in health care, so was aware of what good care pathways should involve. Since I moved, I have had numerous support packages, some obviously short term, others supposedly long term. All have evaporated in to oblivion.

Sorry I can't be more positive. If there is a specific area, I can support you with, give us a shout. It is worth getting in contact with Headway for advice on contact details are pinned to this page.

[Loveblue123 in reply to Pairofboots]

Thank you so much for the advice and offer of help. We have a call later today so fingers crossed!

[Nafnaf87]

Reaffirm PairofBoots response to you Loveblue.Unfortunately there is no joined up response and you can find many bad and long-term experiences on this forum.

Before you start be prepared to get thoroughly demoralised and fed up at the lack of or excruciatingly slow help you will receive. Be prepared to knock on/beat down every door you can think of and probably some you can't. Seek out support from your Headway, Mind, your MP, local council, etc.

Work out what you need and want and do not take no for an answer. Every time they knock you back or over get up again and keep going, do not be afraid.

Good luck and best wishes

Michael

[Loveblue123 in reply to Nafnaf87]

Thank you, I definitely won't give up!

[Nafnaf87 in reply to Loveblue123]

Forgot, a letter/e-mail to Chris Bryant MP who is currently steering his Aquired Brain Injury bill through The Commons may be a good idea as well

[Loveblue123 in reply to Nafnaf87]

Thank you, great idea!

[RogerCMerriman]

I’d assume it’s going to be quite variable, have you contacted your local Headway group? I personally found them very useful and still go once a month.

Both for signposting where to go, who to ask and so on, and to meet others like yourself be that folks with a brain injury or family.

[Loveblue123 in reply to RogerCMerriman]

Thanks for the advice, I spoke with Headway quite a while ago about a different matter and they were very helpful so I will give them a call about this also.