Hello everyone. Can anyone share their experiences please of waiting for a dat scan? We received the devastating news at my husband’s first visit to a neurologist 5 weeks ago that he probably has PD. Since then, despite having been assured by the neurologist that we would not be ‘left in limbo’ we have been exactly that. We have had to chase the letter to our GP so my could start the medication which hadn’t been sent after 2 weeks and have still heard nothing about the scan. We’ve just had a letter today telling us that his next neurology appt has been cancelled. No explanation, no alternative date. Ringing his secretary just takes us to the answerphone. We feel completely helpless and completely let down. Any advice?
Thanks
Hello & commiserations to you both, we have been in your situation very recently. In retrospect, for us things happened quite quickly though it felt like we were waiting forever at the time so understand how you must feel.
My husband was told in early June this year that he probably had PD and agreed to have a DaT scan as there was some uncertainty. We were told it was likely to be around an eight week wait as patients are batched up before the isotopes are ordered to reduce the cost per scan. In fact he had his scan 5 weeks later, and was phoned with the results by his consultant 4 weeks after that, approx 3 weeks ago.
The scan letter arrived 4 weeks after his neurology appointment asking him to phone the nuclear medicine department and he was then given a choice of dates after being asked several questions about his health and medication.
The DaT scan confirms he probably has Parkinson’s and he has chosen not to start any medication yet (we go on holiday soon). He was told he will be seen again in the neurology clinic in 3-4 months time but hasn’t received an appointment date yet.
How soon you receive news of your husband’s scan or your GP receives a letter obviously varies by hospital though things always take longer in August because so many staff take holiday. You might have more luck chasing things up after the bank holiday week if nothing has happened before then. Hope it all becomes clearer soon.
When I was diagnosed last year it took about 6 weeks from the neurologist appointment to get a DaTscan appointment but it took ages to get the results because my neurologist only works one day a week and no-one would tell me over the phone so I had to wait until she had time to dictate a letter.
I was told that I would be seen again in 6 months but didn’t receive an appointment until I called myself to make one about 11 months later. I gather from other PWP locally that this is normal - even if they tell you that an appointment will be made it doesn’t happen unless you call.
Thanks for this Mountainair. I suppose everyone’s experiences are based on where they live. Another example of the ‘postcode lottery’. It’s also hard being part of a ‘system’ and feeling completely powerless. We live in West Yorkshire and it’s looking like there is a problem in our area with neurology staffing. We’ve ended up in Bradford even though we’re out of area because there weren’t any appointments at Pinderfields in Wakefield which would be our usual hospital. This all just adds to an already very difficult situation.
Gosh it’s terrible isn’t it that we have to fight for things? And what happens to those people who can’t?
Hi @Wendini,
Welcome to the forum.
It’s great that you’ve already received some responses from our members. Unfortunately, confirming someone has Parkinson’s can take some time as there are other conditions with similar symptoms. A normal DaTSCAN can be helpful in showing that a person’s symptoms are not caused by Parkinson’s, but may be due to another condition.
However there is also currently no definitive test for diagnosing Parkinson’s. Our information sheet has more information on the process of diagnosis:
If you have any more questions, please feel free to give our helpline a call on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].
Best wishes,
Reah
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Hi again Wendini. We’re in the same neck of the woods, I live in North Yorkshire & my husband is now being treated in Leeds - West Yorkshire where you are of course. What my timescale didn’t say is that my husband was initially seen at York Hospital last October but the neurology department, if our experience is typical, is completely dysfunctional and after my husband was discharged undiagnosed in December we went to Leeds for a second opinion from a movement disorders specialist and they have been great. Yes, I agree there is a problem with neurology services in Yorkshire, sadly, though I understand there are moves afoot to improve things in York.
I share your feelings about feeling powerless, lost in system that seems impossible to understand. Let us know how things proceed, as Reah says diagnosis often takes time.
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Hi , im keith 52 yes old
My dictir saw parkinsons signs and arranfed forca neuroligist appointment in january this yr
I waited 6 months before i heard anything and still have to waut till 25th september
Its a post code lottery
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Hi. Just been reading your post . I seen my neurologist on Thursday he have said I probably have pd but he is sending me for a dat scan to confirm it. But we are going good on hols the beginning of December. But my insurance won’t cover me till we have a 100%diagnoseso. Can you tell me how you have managed with your holiday insurance please .
Hi Parky2
You’re in a bit of a catch22 situation. We managed it as at the time our insurance came up for renewal (an annual policy) my husband wasn’t waiting for any investigations, although the consultant was planning to see him again 6 months later. He’d had an MRI which was normal & had ruled out things like brain tumours, which may have been a factor. We were told that we wouldn’t be covered for cancellation if he needed further appointments or investigations that meant we had to cancel as we knew they were a possibility at the time of renewing the policy, otherwise ok.
As it happens, my husband has since had a dat scan which confirms some type of parkinsons but it didn’t interfere with the two holidays we’ve had (one before & one after diagnosis) & he’s due to see the consultant again in 10 days. We’re insured with LV and unlike many other insurers, they continue to cover you for any new illnesses/diagnoses that take place while the policy is in place.
It would obviously be madness to go on holiday without valid insurance. Only suggestions I have are to ask whoever you’ve booked with if they will allow you to postpone the holiday given the circumstances - some companies do - or, depending on how much money you stand to lose if you don’t go, arrange to have your dat scan privately so you get an earlier result. Dat scan done privately costs around £1000 our consultant said.
Really hope you can sort something out.
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Hi @Parky2 ,
It looks like you’ve received some good advice from @Parky2. If you need more advice on this, we have information on holiday insurance here - https://www.parkinsons.org.uk/information-and-support/holidays-and-travel
Additionally, you can give our helpline a call for more support on this. Give them a call on 0808 800 0303.
Hope this helps!
Best wishes,
Reah
Our gp said my husband did not have enough symptoms to refer him to,a neurologist. We insisted and he agreed 6 months ago, still no appointment. The symptons became worse so we decided to get a private appointment. This neurologist said his symptons were probably not Parkinson’s and that we should explore other causes. When we asked about a dat scan he said the national health would not fund it and so we bit the bullet and paid. Even though we all said it was probably a waste of money. We just wanted an answer. The results came back that both sides of his brain is affected and he has probably had PD for 7 or 8 years.
It’s a relief really. There was definitely something wrong and it was slowly getting worse but I was banging my head against a brick wall getting someone to tell me what. My fear was the start of dementia. Now the GP is prescribing drugs and the local NHS PD team has taken over his case and at last there will be a plan. We don’t really want to have to spend money but the private consultant suggested that we saw him once or twice a year so that he could keep an eye on things. As the GP said that we would only be seeing the nurse on the PD team and that it would be some time before we saw the consultant we have decided to carry on paying to see him.
Hello there - your user name is terrible!
Pleased that you have an answer at last. Your experience isn’t so different to ours except the GP also suspected parkinsons of some sort & it was the first neurologist we saw who was dismissive so we paid privately for a second opinion from a movement disorders specialist. Not completely true that the NHS does not fund DaT scans as it sometimes does, especially where the diagnosis is uncertain. My husband is now being treated and followed-up on the NHS under the care of the team led by the consultant he saw privately and we are happy with that, preferring to hang onto our savings for future care needs.
It’s all a bit of a postcode lottery though and I don’t know what services are like in your area. My husband does not have a tremor and I wonder if people who present differently are less likely to be referred promptly, or to the right kind of neurologist. My husband’s main problems are balance and coordination plus a shed-load of associated non-motor symptoms.
Sorry your husband has PD but I understand exactly how you feel & also felt relief when the diagnosis was confirmed by DaT scan. Once a diagnosis is made services fall into place but without one, people are left in limbo even though they have the same problems. It has shown us that the NHS is in serious trouble but there seems little political will to deal with that reality unfortunately.
Best wishes to you both.
It’s not the name I signed in with! I used contribute to a cancer website blog and it’s the user name for that. Don’t know how it got transferred to this one. Perhaps they use the same software.
Thanks for your reply. We did look for a private specialist with a nhs practice, but there was not one in our area. Hopefully the nhs team will soon be up to speed and we will be able to,save our well earned cash. Not holding our breath though. Can’t get a gpmappointment for three weeks!
You are very lucky - no GP appointments for 4 weeks here!