Parkinson's Education Group Cambridgeshire


#1

I went to a meeting with the Education Group Programme  last year, and 'booked' in for Nov 2014 for another session. This was cancelled. but someone said when the new programme comes out we will let you know. Imagine my surprise when after waiting until February. Then contacting the Parkinson's Nurse to find the sessions began on 6/1/15, with another session 27/1/15, and yet another session 3/2/15.  I noted the session on 27/1/15 was about 'Improving Sleep and managing fatigue'.  Something I would've been interested in. Now I have lost the opportunity to go. Also this web site told me to change my 'status' to write on it.  I e-mailed for help on this subject 26/1/15. To date no reply.

 

Is it worth bothering to try to keep in touch with my Parkinson's nurse, when clearly I am not communicated to by her or her office. Also is it worth asking for help on this forum, when clearly this is not forthcoming. To say I am surprised at the lack of communications is an understatement!sad face


#2

Hi again Mike

If you could give me some additional information here, I can see if we can help. 

Firstly, who was the education session that you mention run by? Was this run by the Cambridge branch or was it a self-management group?

As far as writing on this website, you have posted twice on the forum. It's not clear what you want to do that you can't. 

Again, if you can provide a few further details that would be helpful. 

Thanks

Ezinda


#3
Hi Mike, I'm new to this forum, although I can't offer any constructive advice, I would like to wish you well. When you are living with Parkinson disease whether that be as an individual or for someone else it can be overwhelming and the anxiety and stress that brings heightens frustration for everyone involved. Again I have no constructive advice just complete empathy for your frustrations. Kind regards and all the best

#4

Hi Ezinda

The Education Group Programme was/is run by Cambridge community Services.. I complained to PALS in Cambridgeshire, they told me the Parkinson's administration in Peterborough had been short of staff until Dec.  I did again query this. I wonder if the y were short of staff how they could arrange the sessions to begin 6/1/15? Also how many attended? Also the same on 27/1/15?  I only got my list around the 1/2/15 after I had e-mailed someone in PALS, as my e-mail request bounced back from the e-mail contact I had. PALS told me this person was still working (I accidently put one 'c' too many in the address) I tried again and still the e-mail 'bounced' back. The person in question had left!  Eventually I found the right person. Who told me I should be able to obtain this info' via the Parkinson's nurse, that they had my address, and sent the list. Since when they have sent me yet another list. I feel that the service in Peterborough/Cambridgeshire is not very well run. From my experiences above you can see how I came to this conclusion!

 

Mike

 

Mike


#5

Hi Mike,

Thanks for your message. Ezinda is away so I am replying. Sorry to hear that you’ve been having such frustrations.

It sounds like the group you are referring to is run by the NHS in Cambridge. So, we will pass your comments on to our Policy and Service Improvement team so that they are aware of the issues that are aware of what you have experienced.

Parkinson’s UK do have an Eastern England regional team (which covers Cambridgeshire and Peterborough) that provides a range of support and information services for people with Parkinson’s  https://www.parkinsons.org.uk/content/our-work-eastern-england so you might like to get in touch with them.

You could contact Julie Wilson, the Information and Support Manager for Eastern England (tel: 0844 225 3612 and email: ism.eastern@parkinsons.org.uk) who can provide you with more information and the contact details about for the information and support worker for your area. This information and support worker in your area could advise you about the issues you referred to with your Parkinson’s nurse.

Best wishes,
Alethea
Digital Team