In between appointments

[JeanA]

HI,

I wonder if anyone was having similar problems to me.

I was told, my NHS Consultant would see me every six months with a Parkinsons nurse in between times.I was diagnosed in March 2016 when I saw my  Consultant and spent the first month increasing my dose of Madopar. I began to have severe involuntary movements in my foot and  because I have a disc bulge in my spine I now find myself in severe pain and unable to walk more than about 20 steps on a good day, before I am bent over in pain.

I have tried to contact my PD nurse with no success, leaving messages on her answer phone. I contacted my Consultant's secretary and I did get an immediate reply telling me to halve the dose of Madopar and my GP would be contacted by week ending 23rd July. Nothing has happened since. My GP has received no direction and will not get involved in my treatment.

 Also as my GP has referred me to a pain clinic for my back, she won't take further action such as requesting an x-ray or any other form of treatment. I have been informed that there is an 8 week waiting list for a first appointment at the pain clinic.

I am also worried that I may now have permanent damage with my foot turning in and numbness in my toes and part of my foot.

Can anyone advise me as to how to proceed? Feeling stuck.

 

[Twinks]

Hi Sparkey,

You must be in extreme pain and should not have to wait 8 weeks to see someone. I would do 2 things.

1. Ring your consultant's secretary again and ask for an appointment with either the neurologist or the PD nurse ASAP. Also ask why information hasn't been sent to your GP.

2. Ring the pain clinic and ask to be contacted if a cancelled appointment comes up and take it.

I have learnt from experience, that you have to keep pestering to achieve anything. If you keep quiet, I'm afraid you fade into the background! I managed to get a neurologist's appointment, an MRI scan and a DATscan and diagnosis within 3 months of first visiting my GP, by accepting cancellations. I needed to know what was wrong with me without delay! Mind you, after that, I only saw my neurologist once a year, if that and the PD nurse every 6 months. She wasn't very helpful either. I've recently changed hospitals, as a result.

It's still early days for you, but as time goes on, you will begin to realise that you have to manage your own meds. and do your own research, as we're all different with this bloomin' condition and like you, have extra problems to cope with as well.

Please phone the Helpline on here for support and advice too.

Good luck and don't take 'no' for an answer. I wish you well and hope you see someone very soon.

Twinks.

[JeanA]

Thanks Twinks,

Your understanding touched me. Thank you.

I rang the Consultant's secretary today. She's on holiday and all the poor woman in her office could say was that she remembered me ringing last Monday but that they are so short staffed that she would have to look through a mountain of paper to find my original query! I will call again tomorrow and do as you suggest, this time asking for an appointment with either the consultant or the PD nurse.

I called choose and book only to find that there are ' no appointments'  The pain clinic have put me on a list and say they will call me when they have an appointment. Again, as you suggest,  I will call them again and ask if they have any cancellations. 

I am just beginning to realise how important it is to look after my own needs and how easy it is to be prescribed the conventional Co-beneldopa or similar and then be sent on your way, imagining you will have so much support around you. Yeh right!

I used to be a manager in the NHS and I am not averse to putting on the pressure. But I find, even though I can assert myself, it's a very different matter when you are a patient! 

I worry for those that will fade into the background, as you say. But even with my awareness not to let that happen, one gets tired and I have started  having moments of accepting my lot, thinking I am being unrealistic, 

 I'm back on track again now! Getting my second wind!

But just to add, our area advisor for Parkinsons UK has been a great help but he's been on holiday for the last few weeks, so unavailable.

Thanks for the suggestion to call the help line and good luck to you also.

Sparkey