Produodopa

[JeanieBeanie]

I am getting really frustrated. Produodopa Pump was developed here in UK but our Neurologist, during my husbands consultation, informs us that neither our health authority or nearby Leeds will be using it. He also said that even though my husband was diagnosed 31 years ago doesn't mean he would be eligible for it and that it needs someone to administer it for him because it is not straight forward. I am pretty sure I would be ok with it. It irks me that people who have been fairly recently diagnosed and from other countries are able to get Produodopa and post on here.

I would appreciate suggestions and advice from any of our UK members about this.

[jeeves19]

From my time here Jean, everyone in Europe thinks that things are better for PWP in the USA and PWP in the USA think that Europe has it better!

[Coletteflint]

In situations of inequality like this (especially in England and where the NHS is concerned) I think it’s the squeaky wheel that gets the oil!

Make a nuisance of yourself on your husband’s behalf ( and on behalf of PWPs in the north of England). Contact Parkinson’s UK - they are literally paid to advocate on your husband’s behalf. Pester your GP to be referred to a consultant in an area where Produodopa pumps are being used. Write to your MP and take your husband to meet him or her at a constituency surgery. Contact local news outlets to let them know that, yet again, if your from the north the government don’t care. Contact other people in the same position ( there must be hundreds). Start an action group. Start a petition. Show everyone you meet the miraculous BBC footage of the pump giving a man his life back then tell them “but not if you’re from Leeds!” You have every reason to be angry. Don’t be quiet!

[debmorris1 in reply to Coletteflint]

Great advice! You definitely have every reason to be angry. I pray you will get it sooner than you expect.

[JeanieBeanie in reply to Coletteflint]

I have already asked for my husband to be referred to another hospital to a doctor a social worker recommended. It would be difficult for me to do all your suggestions and be his full time carer but you are right. I think the fact he has had DBS might have something to do with it.

[Skydome]

England was the first in the world to approve of its use in the NHS. Feedback so far from users? Crickets. Does it mean that it has been prescribed very sparingly as reported here or does it mean that the success rate of using it has been poor but PwP don’t want to complain?

[CuriousMe12]

I believe it costs 30k per patient and expensive nursing costs.It seems unfair. If they can't offer it to everyone in need then no one should be offered.