What sort of help should I be getting?


#1

The neurologist at the hospital I was referred to told me last week that I had atypical PD and that he would be referring me to a specialist clinic. He prescribed two weeks' worth of DA patches. My GP doesn't seem  interested in any of it, just told me that I could re-order my prescription online.

Is that it? No support, no other help?


#2

You will probably find that you need to fight for any help you get.  I am very lucky with my GP - he is just brilliant, but the hospital have been far from supportive.

I have found that most information has been gathered from fellow sufferers of PD.  Some of it on this forum and others from talking to members of my local group.

This website carries a lot of very helpful information and all areas have a support worker - you could try getting in touch with them.  Alternatively, find your local branch of Parkinsons Society and they will offer suppport., guidance and friendship.

Dont despair, there's loads of us out here and we are here to listen to you and help each other through.


#3

Hi Tabbycat,

I am sorry to read you feel you're not getting the help you need.

As OxfordGills said, there is lots of support here for you; through our publications, helpline, local groups and information and support workers. You can read more about it all here: http://www.parkinsons.org.uk/content/support-you.

I hope this helps.

Best wishes,

Ilona

Moderation Team.

 

 


#4

Thanks - I agree this site is fantastic! I just thought I might get a tad more support from an NHS I have been paying into for the last 36 years - silly me! 

Despite being diagnosed only last Tuesday, the GP didn't even ask me how I was, how I was coping, nothing. sad face


#5

 

Hi tabbycat


And sorry for the service you don't seem too be getting, When i was diagnosed all i had from the Neuro was a little blue card and the words ''you'll find everything you need too know here'', Thankfully i had already visited here from the moment it was suggested. After diagnosis one Gp left and one arrived, and it seemed like  bringing up the new one up too speed on everything i had covered together with the gp who left.

There have been times, months even beyond when an appointment should arrive with the Neuro, but thankfully i was also refered too a PD nurse as well, the Neuro appointments can sometimes seem god like and cold  like in a recent video on the forum ''here's another pill come back in 3 months", But the Pd nurse appointments more than make up for that.

Best laid plans of course sometimes fall over with red tape at the Gp's, everything should run seamlessly, and this is the service you should be getting, knowing the next step in a warm educated way. I'm not sure what else you can do other than keep pushing and don't take No for an answer. it would if it could be possible for PUK too do a little pushing on your behalf as well, is this possible?.


#6

Thanks Sea Angler.

I'm pretty good at pushing, I just didn't think I'd have to (and I wonder what happens to people who aren't so good?).

Fortunately so far my symptoms aren't too bad (relatively speaking)  - I can work full-time, exercise, socialise, etc so I don't need much but, as you say, it would have been reassuring to be told what happens next, and where I can get advice and help if I need it.

What do PD nurses do?

 


#7

Hi Tabbycat

Sorry to hear about your GP experience.

You can find out more about Parkinson's nurses at www.parkinsons.org.uk/nurses

There are details of what they do, where they are and the referral process involved.

We have Area Development Managers too who work with people with Parkinson's, family members, carers, volunteers and health and social care professionals to identify gaps in services. So it may be worth getting in touch with your local Area Development Manager.

Have a look on the appropriate region or country contacts page and you'll be able to see who to contact. It'll be on an equivalent page like this one for example: www.parkinsons.org.uk/content/south-east-local-contacts#localneeds

Best wishes
Dave


#8

It can be hard to have to feel that the neuro service is too stretched to be able to show much interest in individuals. I think mostly they do their best. I would like to know more about Parkinson`s nurses---no one has suggested them to me.

All the best,

Frances


#9

Hi Frances, 


You can find out more about Parkinson's nurses here: http://www.parkinsons.org.uk/content/parkinsons-nurses


There is information about finding nurses in your area at the bottom of the page, and you can also "Browse nurses by region"


Best wishes,


Min


Moderation Team.