What can we expect from the Community Neurology Service (CNS) ?

[Boyyo]

Hi all,

It dawned on me that I should have asked a few days ago, but we're due to have a call with a member of our local team, which has been set up by our Consultant.

I believe that its a more dedicated specialist team who have access to various support elements / clinicians but am not sure. No doubt we'll find out today, however if anyone's had experience of the best way to utilise this very welcomed support, please let me know.

ie, if there are aspects of their support that you wished you'd known about earlier on etc...

Cheers & best wishes

[Hellebelle]

Hi, I am so pleased that you are getting more specialised support. They should really be on the ball with all the symptoms and any medications that could help to manage the condition. The most helpful thing for us was that they could fast track dad to other help such as speech and language therapy, the palliative care team and hospice services.

Wishing you well. Helen x

[Boyyo in reply to Hellebelle]

Hi Hellebelle,

We spoke with a member if their team who is a physio, and specilaises in people with neuro conditions. It all seems to make sense, as the small team consists of two or three dedicated support bods.

To be honest, we've already set up links to Speech therapy and incontinence support so there was nothing new they could add there. The links to hospice and palliative care was very briefly touched on 'as continued care' but J's not really entertaining that at the moment.

They're arranging for a Physio / OT review at home in November which is exactly what I'd hoped for as we I can hopefully continue to do the physio side of things myself in the future. Also, they're looking at what physical support aids might be feasible i.e. seats etc ..

All in all it was a good contact and hopefully we'll learn a bit more for the future.

[Hellebelle in reply to Boyyo]

It's all about quality of life and adapting to changes/situations as they happen. So pleased it went well. Please keep us posted.

[TK-67]

I just wanted to reply and say even if J doesn't yet need or want hospice support they can still support you. I've had support from ours, it's been invaluable. They're there for the whole family, having early engagement is also a good idea, just in case.. they are wonderful places.

[Boyyo in reply to TK-67]

Hi TK

Thanks for the response.

Weve not mentioned prognosis or hospice support as yet, but I know we need to and maybe now us the right time. As you say its not just end of life.

[TK-67 in reply to Boyyo]

meant to say as well ours helped with sorting benefits too. They're just a really good place to go to for information.

[Courgettegrower]

I have been quite confused as to where we go for info next stage etc. We have loads of folk now involved, neuro rehab team, MSA nurse, district nurses, wheelchair service, continence team, so-called neuro nurse( PDteam) once a year by phone) GP (best yet) got us referral to local hospice for respite. Previously we had a surprise visit from a new DN on a Sunday morning a couple of weeks ago to asses CHC checklist. Now the hospice have seen him and done another checklist and come to a completely different conclusion. I feel supported by the hospice in a way I have not felt previously. Lots of fears are being relieved. Someone on our size! Phew!

[Courgettegrower in reply to Courgettegrower]

For size please read SIDE

[TK-67 in reply to Courgettegrower]

Our hospice was a breath of fresh air too - for mum and me. I've had the help of counselling all the way through lockdown. They are amazing people!