Feeling cast adrift....


#1

I’m a 69 year old retiree.

It was April of this year when I was concerned that, what was first thought to be an essential tremor was possibly PD so I had the doctor refer me to the Neurology department at Birmingham’s Queen Elizabeth Hospital. I received a reply from NHS confidential informing me to wait up to 3 weeks for an appointment, and If no appointment was scheduled by then, I was to contact a telephone number. So, three weeks passed and I’d heard nothing so I dialled the number and was informed by some person (who I believe was just an administrator) that they were still in the process of scheduling last December’s referrals. Effectively, I was told, “you’ve got no chance mate, except to be patient!”. I was a little taken aback!

Shortly afterwards, I made the executive decision to stump up the cost of a private consultation, just to gain peace of mind and determine precisely what my condition was, and so It was on the 8th of May this year that I was diagnosed with Idiopathic Parkinson’s Disease, and a recommendation was made for me to be prescribed Sinemet, slowly graduating up to 125mgs 3 times daily. I’ve since been dutifully taking them.

Fast forward to the 6th of July, when, still having heard nothing, feeling insecure and abandoned, I requested my GP to expedite the NHS appointment process, which she duly did, and to what I thought was great effect, as I was then scheduled to attend a clinic on the 8th of August. Alas, a few days later this was cancelled, and after yet again contacting an appointments administrator, was told I wasn’t going to get an appointment anytime soon!

To cut a sad story short, I’m taking 6 tablets (Sinemet) a day, and not feeling any benefit whatsoever. I’ve no relief from my right-sided tremor, and I’ve begun to feel stiffness too. What am I supposed to do? I can’t get past the wall of non-medics in order get advice and possibly a different prescription. The experts appear to be unassailable.

Vive le NHS! (that’s sarcasm in case you didn’t know)


#2

Hi, sounds like you’re certainly adrift and it doesn’t seem to be unusual anymore with the cuts to NHS.
Anyway, suggest you see your GP and tell them sinimet isn’t working and they should get your appointment with the consultant expedited for you. My husband finds madopar is quite good, but I understand it’ll be different for everyone. But certainly give them a shove and don’t be shy! We had to ask for a second opinion as the first consultant was great at the nice soothing sounds but not in the practical get things sorted and investigated bit. Well she was actually rude and patronising to be honest. I think we have a new generation of Parkinson’s patients and sine of the medical team are struggling to adapt to being questioned and challenged.
Hope you get sorted soon, it isn’t right that we should all have to wait so long. Best wishes.


#3

Hi @Swiftly,

A warm welcome to the forum.

It sounds like you’ve had a bit of a roller coaster experience leading up to your diagnosis which I can imagine was really distressing. I’m really sorry to hear this.

I agree with @Chrissyh, you should definitely go back to your GP or Parkinson’s nurse and speak to them about your medication, especially if your tremors have worsened. We have a team of highly knowledgeable advisers via our helpline who would be happy to offer you more support on this and can arrange for a Parkinson’s nurse to contact you within 24 hours.

Please feel free to give us a call on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email hello@parkinsons.org.uk.

I hope this helps.

Best wishes,
Reah - Forum Community Manager


#4

Thanks for the reply.

I certainly will get in touch with my GP again, but even that isn’t so simple anymore. Do you remember those halcyon days when getting a Doctor’s appointment was as simple and convenient as popping out to the corner shop? Oh dear, just listen to me bangin’ on…

Anyway, once again, thanks for the response.


#5

If you mean those days when you just got in there before everyone else or waited for ages squished up in a small room with a bored and fidgety cold on your laptop, people coughing and picking their nails, clattering their dentures and asking each other details about their back whilst you wait to see the GP yes I do! Then there were the Paddington Bear stares when a patient had the audacity to be heard laughing with the GP, or worse was taking more than five minutes when there was a big queue?
Hmm, I’ll remember that next time I complain about not getting an appointment at the time I want… Although we’re blessed with a surgery that really does see you on the day, one way or another if you need them.
My hubby has just got an appointment for next week to see his consultant and the results of his pet scan following my phone call to a very helpful constants secretary. So hoping we can get his medication altered a bit and bit more in depth on his results.
Once again a positive change, who would dare to call a Consultant’s Secretary back then? Not quite the days you spoke of Swiftly, but the seventies systems weren’t any better either.


#6

I had a similar experience last year. The waiting list for a neurology appointment back then was more than 3 months, but this week my GP told me it is longer now. I’ve opted to stick with my private neurologist.

But you don’t mention whether or not you have seen the NHS Parkinson’s nurse or had any physiotherapy. You are entitled to both services on the NHS regardless of whether you are seeing an NHS consultant or not.

Where I live, the Parkinson’s nurse is overworked and unobtainable. I’ve never managed to get any advice from her. She does not return my calls. This is another reason I’ve stuck with the private consultant, because at least I can usually see him on a fortnight’s notice. But I have found the advice from the Parkinson’s UK helpline very helpful.

I also go to the local Parkinson’s UK group exercise classes. I was referred to them by the NHS neurology physiotherapist, whom I started seeing even before I was diagnosed. Your GP should be able to make a referral to the physio for you.


#7

It was meant to be a tongue-in-cheek response, but I’m obviously lacking communication skills… do you think I might have Asperger’s Syndrome too? Oh my god! As if Parkinsons and Prostate cancer isn’t enough for one lifetime! Sigh! Still, I suppose I mustn’t grumble, I mean, there’s always someone worse off, aint there? Anyhow…

I don’t consider myself to “have” a consultant, unless you count the guy I paid to see in the first instance (and only because the NHS stone-walled me). But since I retired I’ve no longer got the luxury perk of private health insurance paid for by the company; and my private pension, though not quite laughable, is modest, to say the least. But still, thanks for the advice, and I shall phone the aforementioned consultant’s secretary to see if I can blag a freebie prescription modification; but I’m betting it’ll be a case of, “show us your money!”, or, to put it in current vernacular, “give us your plastic details!”.

Hands up all those who think I’ll get a positive result?


#8

Thanks Jane, I am aware of the extra services available, but my main concern for now is seeing someone, preferably a neurologist whose speciality is PD. My initial consultation was with a consultant whose primary focus is Epileptology, but that’s my fault as I was so relieved to finally see an “expert” I failed to read the small print. I’m sure he’s a capable man though, but I can’t rid my mind of the word “moonlighting” :slight_smile:


#9

You’re doing well to keep your sense of humour, but I feel a large amount of stress tucked away inside.
Stress is nobody’s friend.
Keep on at them
Good luck
Hubby


#10

So sorry to hear of your experience, it seems this is yet another postcode lottery. We have been somewhat luckier here and have had fifteen years of regular appointments. I rang the Parkinson’s nurse today as I was concerned about my husband and she is coming to the house to see him tomorrow.


#11

Hi Sue,

Yes, I’m sure location plays its part, but I’m also aware that I’m only in the early stages of PD, and that other more advanced sufferers may require prompt regular attention. But it is a kind of catch-22 situation, given that Parkinsons, like most other diseases, is best treated as early as possible. Or am I mistaken?


#12

Thanks Hubby,

Yes, you’re right, I have my fair share of anguish and anger, but I try not to nurture it. I like to think I’m ordinarily a reasonable person (said with teeth clenched) :smile: