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View Full Version : Just when you think things are good.........



Chris
7th September 2011, 21:22
They turn to s**t. I am feeling a bit peeved off, for around 10 months after dx I was pretty much left to it and then I finally get a physio from the community support team (that's after I had to prompt my referal thanks to someone giving me their contact number) who was great and really made a difference, helped with all other referrals, getting little things to help and also got me my riser recliner. On the last visit I was told I may end up with someone different, but now it seems I've nobody! The contact number I had now says " number not recognised " It's annoyed me that the minute I get someone who has helped solve a lot of things has just been taken away and nobody has even bothered to contact me!

Sorry for the rant, just feel in limbo again.

sarahezekiel
7th September 2011, 22:07
Hi Chris

I'm afraid that I've experienced the same with most services. Almost everyone closes my case. It seems to be normal. They should have told you.

Don't you go to a hospice? They should be able to sort it out. Don't worry, you may find someone better comes along. I hope so.

Best wishes

Sarah

Chris
7th September 2011, 22:28
Yea I've been hospice today and they said they can help out, just annoyed at the min lol. Thanks :)

elle
8th September 2011, 00:13
Hi chris i know how you feel, now i have that many different bodies coming in i don't know who is who i feel like my home does'nt belong to me anymore, just hope you get someone soon do you not have a mnd visitor through your local branch [mnd association]? Take care elle x

computatec
8th September 2011, 12:46
Hi Chris

I have had the same experience and frutrations and feelings of abandonment. The OT's and Physios that we used to be able to call on telephone numbers they gave us have all been transferred to the control of Adult Services and we have to go through case managers and be assessed to get any service. If you get any service it is for one or two visits only and then you are discharged. I have a letter telling me I may have to wait for six months to get adaptations to the bungalow I have just moved into.

After days of phoning and diggiing around I have found out that we might get some help from the Community Health Service. I have a Physio coming to see me tomorrow from the Community team. This is as a result of my talking to our MND care coordinator for my area at the MNDA who has pushed from her end.

The best source of help is to get referred to one of the MND care centers, two in London, one in Oxford, Cambridge and some other places. They are part funded by the MNDA and have the whole team of specialists we need under one roof. It depends where you live really, bu I think this is the best option available to us.

Chris
8th September 2011, 17:17
Thanks For the info, I had a feeling I wouldn't be the only one to be left in lurch!

Jeannie
8th September 2011, 17:30
Hope you make a complaint, Chris grrrrrr

Chris
8th September 2011, 17:39
Oh don't worry Polly is good at complaining lol

elle
9th September 2011, 01:49
like all us women mnd as taken parts physically but we can still fight our corner lol:p

Batty
9th September 2011, 11:12
Hi Chris

I have had the same experience and frutrations and feelings of abandonment. The OT's and Physios that we used to be able to call on telephone numbers they gave us have all been transferred to the control of Adult Services and we have to go through case managers and be assessed to get any service. If you get any service it is for one or two visits only and then you are discharged. I have a letter telling me I may have to wait for six months to get adaptations to the bungalow I have just moved into.

After days of phoning and diggiing around I have found out that we might get some help from the Community Health Service. I have a Physio coming to see me tomorrow from the Community team. This is as a result of my talking to our MND care coordinator for my area at the MNDA who has pushed from her end.

The best source of help is to get referred to one of the MND care centers, two in London, one in Oxford, Cambridge and some other places. They are part funded by the MNDA and have the whole team of specialists we need under one roof. It depends where you live really, bu I think this is the best option available to us.

I have had a similar experience with Leicestershire county council who have provided me wih a fantastic OT and social worker for the last 6 1/2 years, but unfortunately they have both taken redundancy due to cut backs.
So from the start of the new financial year I have been faced with ringing in and speaking to the random on duty people who do not know my case and circumstances, which takes longer and is very frustrating. Regards Mark

PoetChristopherRobin
9th September 2011, 15:06
I can imagine how frustrating that must have been to you

Chris
15th September 2011, 17:30
Got my community physio back :) their had been problems but all seems sorted again now, the relief is massive for me and I already feel far less stressed than the last few weeks. The OT on the other hand is not great, I really don't feel she cares and comes across very cold! Don't feel I can't talk to her, we are going to ask for someone else.

MND Connect helpline