Can’t do anything without diagnosis


#1

Can anyone advise. My father’s doctor believes he may have Parkinson’s but if so in the early stages. My father is 80 and over the last year we have seen a massive decline in his mobility. He does not have a tremor but his is becoming increasingly unable to walk and use his hands. He keeps falling and yesterday when I got him home he was trying to walk up the ramp that my mom has put in and his right leg froze, he just couldn’t move it full stop. The geriatric doctor at the hospital says it could be Parkinson’s too, but “let’s watch and wait for another 3 months”. All the time my ‘x’ gym going active dad gets worse and worse. So questions I have…

If we pay for him to see a private neurologist with Parkinson’s specialsm do we inadvertently take him away from NHS help. What if the consulant diagoses parkinson’s and prescribes medication? Are we in danger of that being a private prescription? What about DaTscans, if he is referred for one, is that too private?

Has anyone here paid for a private DaT scan? How much do they cost and how long did you wait? We are in the West Midlands? Does anyone know where to get Private DaT in the midlands should we decide to pay?

Also regarding Parkinson’s medication- I realise it is varied and a big topic but his doctor said it takes 12 weeks to take effect? What are your experiences?

I realise in asking all this that there is a possibility that this is not Parkinson’s but two doctors think it probably is. ‘Probably’ doesn’t get us anywhere near medication though.
Sorry if this is a bit of a ramble but this is all new to me and I just want to be able to help my dad one way or another.

x


#2

Hi,

I can only say what I would do in your situation as I do not think I am qualified to advise you.

I would ask to speak with your dads Dr and ask him/her to explain the reasons why your dad has to ‘wait 3 months’.

If you are not happy with the explanation you can make a formal complaint.

Before anyone is able to discuss your dad’s health with you , they will need him to give his permission first or be present at the appointment to do so.

I know it is worrying having to wait but there may be a valid explanation, just ask.

There are so many similiar health issues to Parkinsons.

Take one step at a time.

I would wait until he has been told he has Parkinsons before trying to learn about medication. It is complex as everyone is so different with PD.

Good Luck x


#3

Hi, I was diagnosed using private healthcare using my work health insurance. Basically what will happen is once diagnosed the neurologist will give you an initial prescription that you can take to your GP. Private Health insurance providers once diagnosed won’t touch you. So your GP will refer you to a NHS neurologist, however with a diagnosis in place this process should be quicker although for me it was still 2 months but at least you can get medication whilst your waiting.

The neuro may insist on a DatScan to confirm diagnosis though, which ain’t cheap, mine was a few quid shy of £1500. Plus around £200 for each consultation

Hop this helps


#4

Hi @ifcatsruledtheworld,

A warm welcome to the forum.

It sounds like you’ve had quite a choppy and unclear experience with the NHS so far which I can appreciate isn’t particularly helpful to you or your father. Although you’ve received a lot of great advice from your fellow forum members, I would also advise that you contact our helpline service on 0808 800 0303 to speak to one of our trained advisers who will be able to give you the answers to many of your queries and can even arrange for a Parkinson’s specialist to contact you within 24 hours.

We also have a lot of useful information on our website for people who have been newly diagnosed with Parkinson’s here that you may find helpful.

I hope you find the information above useful and please keep us updated on your father’s wellbeing.

Best wishes,
Reah


#5

I can understand your frustration. I decided to see a neurologist privately when I was told of the long wait for a NHS appointment. He said he thought I had Parkinsons - I wanted to know for sure, and he therefore arranged a private Datscan which confirmed the diagnosis. I think it was about £1400, and was arranged in about 2 weeks. It showed that I have Parkinsons to a moderate degree - he thinks I have probably had it for 5 to 7 years. (I am n ow 82)

He then wrote to my GP saying what medication I should take - a prescription was written and I am now taking it, with both the GP and the neurologist wanting follow up appointments. I feel that I am being well looked after, and this forum is a useful source of information, and contact with other PD patients.
Good luck
Knine


#6

Hello All and thank you for your helpful responses.

So yes, I shall ring the helpline - definitely!

It seems you’ve all paid for your own DaT scans. The cost is not too terrible if it confirms or rules out. If I am reading your responses correctly, if we pay for my father to see a private neurologist and he prescribes ‘x’ then we take that back to the doctor and that prescription becomes an NHS prescription? The last thing I want to do, is by trying to help, put my parents in a position that they have to pay for what would have been free. As a family this is exactly what happened regarding my mother’s breast cancer. My sister and I paid for the surgery and my mother had to pay for all her follow up treatment. Ladies that she sat with got it free, hence our caution on this occasion.

Your advice is helpful, thank you?

Did the medication you received post diagnosis make improvements to your lives?

Kindest Regards
k


#7

Hello,

Yes you are right, the private neuro should give you a diagnosis along with a prescription you can take back to the GP to dispense via the NHS, to be on the safeside and taking into account your concerns, I would make this crystal clear this is what your looking for when you book the consultation. Basically a diagnosis and initial prescription, not any ongoing aftercare. Albeit the diagnosis may need a DatScan. Which from what i understand isn’t always necessary.

In terms of my medication, personally I am still struggling to get the symptoms under control, but thats me, everyone is different


#8

hi just come across you on forum don,t know where you,r from i live ln south wales and i did,nt pay for my dat scan and never had to wait to long for it either
Petec


#9

Hi
I have been on medication for a month. Some days I think things are better, other days I am not sure. One son commented on my improved movement, so, maybe something is really happening.
Knine