I been diagnosed with PD for 15 years. In the last few months my condition has rapidly deteriorated and i need help and professional advice… I now discover that the Parkinson’s nurse service has been wthdrawn by the NHS along with the specialist neuro physios and OTs. So I turned to the PUK website for info on local support - zllch. There are no support services in this area for PD patients and no input from PUK. A quick search on the Alzheimer’s site revealed pages of information about support for people living with Alzheimer’s. It’s the same old story - whilst Alzheimer’s, cancer charities, the British Heart Foundation relentlessly stick their heads up on behalf of their members - running very effective national media campaigns raising awareness as just one example - PUK remains cosily below the parapet, virtually invisible in the national consciousness. I have a ‘forgotten’ illness.
I suggest PUk changes tts slogan from the laugaable ‘You’re not alone’ to ‘You’re on your own chaps - we’re not interested’ - at least it’s honest. .
I have to say that there is no support that I have found here in Spain.
I have my own GP who is lovely, but by her own admission very weak on PD. Then I have my Neurologist who is doing her best but I see her once a year.
That’s not enough.
Hate to say it but you do have a point. In terms of charities and awareness, Parkinson’s seems to be the poor relation. My cynical view on the reason is because Parkinson’s by enlarge effects people of none working age so there is no commercial incentive.
I’m really sorry to hear that your condition has deteriorated recently – this must be really hard for you to deal with especially if you’re not feeling supported. Regarding the withdrawal of the Parkinson’s UK nurse service, NHS services are under threat and where Parkinson’s UK becomes aware of this, we’ll offer support locally to do everything we can to defend and increase local provision. Whilst many times we have been successful unfortunately this is not always the case.
However, if you send me your location details via private message, we can get in touch with the area development manager who would be able to confirm if the post had been withdrawn and if so what is being done. Unfortunately, we experienced a technical glitch on the local support tool on the Parkinson’s UK website which lasted a few days, so this could be the reason why your search wasn’t successful – our sincere apologise for this. Please give the search tool another try here - https://www.parkinsons.org.uk/information-and-support/helpline-and-local-advisers
You can also give our free and confidential helpline a call for more information and support on your current condition. They can also arrange for a Parkinson’s nurse to call you back within 24 hours. Please give them a call on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm.
I look forward to receiving a private message from you, however, please let me know if you need assistance with this.
