I posted for advice over a year ago now and received some very kind and helpful responses. However, since that time life has changed alot. My husband, who has PD, was at that point suffering the effects of having been made redundant and was at a very low point. He was also under the threat of being dragged through court by his ex-wife. Very stressful time. The Court never happened and was resolved by the end of June 2015. We still had not found a private neuropsychologist by that point. Then, within a few weeks, his mother died suddenly. That tipped him even lower in mood. We saw the PD nurse who said to see the GP to get an NHS referral locally as she wasn't allowed to do it. The GP said to see the Consultant. We finally got the Consultant to refer him in November 2015 and an appointment came through for February 2016 with a Consultant Neuropsychiatrist at St Georges, Tooting. By that time my husband's father had also died unexpectedly (both parents within 5 months) and he has also been unsuccessful if finding new employment. Neuro Consultant sent us back to the GP for local neuropsychology referral. The GP surgery filed the letter without actioning and last week I chased them over the local referral (which is how I found out what they had done) and they left a message for the GP's return from holiday yesterday to action the referral. GP telephoned and left message with my husband that she cannot refer and that she was leaving a letter at reception with phone numbers on. I picked it up a couple of hours ago and it isn't a letter, but a leaflet from Surrey Downs Clinical Commissioning Group directing us to their website, which I find incomprehensible. I've asked for the GP to call me this evening but I'm lost for words. It's been 8 months and we are back at square one and my husband still has not received any therapy help whatsoever and due to the life events that have befallen him his condition has worsened, both mentally and physically. I've left a message for his PD nurse. I feel like we are drowning. How does anyone get the help when they need it? Is this the reality of there being a lack of neuro support services? Why would the Consultant refer us back locally if there isn't any? I'm almost speechless. Is there anyone with experience of this type of support in the Surrey area?
oh dear me.
My husband had chronic depression before being diagnosed with PD and was on antidepressants, was offered help via his GP. Eventually got so bad referal to local mental health was made. etc etc
But once he was under the lovely parkinsons specialist things changed for the better. Sad to have to get diagnosed with PD to get mental health help.
He changed the antidepressants and just because he was listened to by somebody, husband improved no end and changed medication and is now so much better.
So sorry to hear about your troubles. Hopefully GP will ring you back. Else ring the Parkinsons helpline, these people are soooo helpful and friendly you will be glad to called them.
Please ring them for advise
Oh, that's just appalling, Juliam! All this time and you've still got nowhere - it's beyond belief.
I can't offer any advice, but you have my sympathy. Have you tried phoning the Parkinson's UK helpline? I don't know if they can help but it might be good to talk to someone.
I fell through the net last year and for a while had nowhere to turn to. It was only by continually pestering people that I got anywhere - although I still had a long wait of sheer hell before I could get any medication.
How people who are sicker and weaker than me manage, I really don't know.
Hi Juliam, I cannot believe what I have just read in your post. Talk about passing the buck from one to another. The neurologist or PD nurse should have made a referral long ago.
I was offered both neuropsychology and neurophysiotherapy by my neurologist, shortly after being diagnosed........6 sessions of each. Sorry, I'm not in the Surrey area though, I'm up North. Keep pestering as Tabbycat says. All the very best.
Is this the sort of thing you mean, sorry it isnt surrey if it is? I went on a course after my first initial visit to the Gp, it didnt really deal with illness, but 1-2-1 was available for those who felt they needed it, at diagnosis i wasnt offered anything other than a little blue card
I'm really sorry to hear this, it sounds like things have really been going round in circles with the referral over the last few months, which sounds so frustrating. I hope you've now heard from your GP.
It would also be worth getting in touch with your local adviser and seeing how they can help. Find an adviser in your area here.
Thank you everyone for your kind words, support and recommendations. The GP was very frosty with me last night saying I just had to choose a service and refer ourselves. I've just got off the phone from our PD nurse who is appalled (she was the one who started this but was not allowed to refer as there is no in service at her unit currently). She has guided me through some of the links on the website I've been sent and she had other thoughts and given me details of a potential therapy locally that doesn't appear on the GP's list. I am now going to ring round everything I've been given and make a decision from there, starting with the adviser link in my area (thank you Joanne M).
Just frustrated as I could have done this over 8 months ago had I been told that it was really up to us to do ourselves!!