Activity management

Ask our experts all your paediatric medical questions here.

Moderator: talkhealth

Locked
16 posts
onlyme2013
Posts: 21
Joined: Sun Aug 11, 2013 3:58 pm

by onlyme2013 on Thu Aug 15, 2013 10:50 am

Re: Activity management

Thank you for the response.
My problem is that we are essentially being told to ignore the evidence before our own eyes: he is made worse by activity. He gets better when he is allowed to rest and pace himself (at his own pace).
So, on this instance, would you recommend we continue on GET or allow him to recover first?

onlyme2013
Posts: 21
Joined: Sun Aug 11, 2013 3:58 pm

by onlyme2013 on Thu Aug 15, 2013 1:42 pm

Re: Activity management

Bluebottle, thank you for the TYMES Trust suggestion. I found a great document on their website re relapses which clarified a few things.

I'm still really grateful for the advice on here and would be grateful for any answers on my inflammation/infections and GET query. Thank you.

User avatar
Dr Caroline Grayson
Posts: 21
Joined: Wed Aug 14, 2013 10:20 am

by Dr Caroline Grayson on Thu Aug 15, 2013 11:33 pm

Re: Activity management

I would want to know what you mean by activity and whether when you talk about GET are you looking at a specific exercise programme or are you talking about day time activities including school work/going to school etc. which can be described as activity management.
Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

onlyme2013
Posts: 21
Joined: Sun Aug 11, 2013 3:58 pm

by onlyme2013 on Thu Aug 15, 2013 11:53 pm

Re: Activity management

I am referring to the GET program - not activity management - that. Is being prescribed.
This includes school attendance - with a constant push to increase - and no support informing the school of it being a fluctuating illness etc.
There is no acknowledgement of a need to stabilise health and only then increase; as there appears to be no flexibility. There is a push to see, for example, a 20% increase in school attendance each week/two weeks/month but when I can see my son getting worse becuse of the demands we are told to "push on".

Also, when there is no acknowledgement of physical symtoms and possible infections (showing in bloods) how is this helping?

If I could just say: this confusion of GET and/or activity isn't down to my misunderstanding. The professionals involved are giving us a program and telling us it's GET.

User avatar
ChrisofCabra
Posts: 23
Joined: Sat Aug 03, 2013 6:57 pm

by ChrisofCabra on Fri Aug 16, 2013 9:29 pm

Re: Activity management

onlyme2013 wrote:I am referring to the GET program - not activity management - that. Is being prescribed....
The professionals involved are giving us a program and telling us it's GET.
You are absolutely right and it is not your confusion. There are at least two entities out there wearing the GET uniform.
While one is adaptive to the individual, looks at establishing a safe beginning baseline,
and wants incremental increase only when the previous one has been convincingly and safely proven established,
the other is far more of an inflexible, impersonal rule of iron, with "steps up" coming almost remorselessly by timetable rather than in variable response to feedback on success and toleration or pain and fatigue.

Do good GET practitioners possibly err into thinking that what they do is what everyone is practising?
Bad GET practitioners of course firmly believe that what they are doing is good GET.

User avatar
Dr Caroline Grayson
Posts: 21
Joined: Wed Aug 14, 2013 10:20 am

by Dr Caroline Grayson on Fri Aug 16, 2013 10:21 pm

Re: Activity management

I think there is definite confusion with the terminology.
I tend to consider GET as a specific exercise programme that is overseen by physios eg walking programme which is steadily increased . Activity management looks at all everyday activities including school work/computer time/seeing friends aswell as any physical activity and sets a base line of daily activity which is increased by 10% only when an individual can maintain that level consistently for 2 weeks. In your case it sounds like the increase is occurring too quickly. The rate of increase needs to be individualised and liason with school is imperative.
I would recommend looking at the royal national hospital for Rheumatic disease website which has specific information about activity management
http://www.rnhrd.nhs.uk/uploads/files/1 ... gement.pdf

Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

Locked
16 posts