Live in Cumbria? Don't get Parkinson's
On our Movers and Shakers podcast we have heard from many people who struggle to get an appointment with a neurologist, sometimes waiting years to see a specialist. That is why we have made “speedy specialists” the number one demand in our Parky Charter campaign for better care.
But imagine being told not that you would have to wait a long time for an appointment but that the neurology service in your area is stopping completely. That is what has happened in South Cumbria, where people with Parkinson’s have received a letter from the North Cumbria Integrated Care NHS Foundation Trust or NCIC.
The NCIC confusingly has the contract to supply neurology services in South Cumbria but is telling patients that it is pulling out at the end of March next year::
“From that time, and depending on the alternatives identified, it may be that patients may have to travel to other locations to receive support and/or may choose to go to another service provider.
The change is taking place because, for some time now, NCIC has had interim measures in place to provide the service in south Cumbria. These interim measures are not sustainable in the long term and recruitment remains a huge challenge.”
Nick Morey, a 71 year old man from near Barrow-in-Furness who was diagnosed with Parkinson’s in 2016, contacted me about the letter and translated it for me. He explained that the last neurologist had left the local hospital in February:
“They've not been able to recruit anybody since. So they've got a service which is operating in North Cumbria that's still sort of protected, but the contract that they had to cover South Cumbria, basically, they can't recruit anybody for it.”
Back in the Spring, Movers and Shakers was contacted by Michelle Grant, also from Barrow, with a warning of what was going to happen. She had written to her MP, saying she had not seen a neurologist for a year so had rung the hospital to fix an appointment: “I was dismayed to learn that my consultant had left and no one has yet taken over and we don't know what the timescale will be for a replacement.” She made the very good point that people on Parkinson’s drugs need to see a specialist reasonably regularly to get their medication tweaked.
When I called Michelle a few days ago she told me that after contacting her MP and complaining to the hospital she did eventually get an appointment with a neurologist in September - the catch was that it was in Penrith. A glance at a map might make you. think that Barrow and Penrith are not that far apart but anyone who has driven in that part of the world will tell you it’s quite an expedition. Michelle says it took two hours for her husband to drive her there and Google Maps says it would take well over three hours by public transport.
Meanwhile, the ball is now in the court of the Lancashire and South Cumbria Integrated Care Board, which originally handed the contract to the NCIC. Last week it released a statement saying “the ICB has been actively engaged with all partners to ensure the continued and future neurology provision for the locality, and is close to being able to announce alternative arrangements.” It says it is working to ensure the service can be delivered in South Cumbria and promises to come back with more news by this Friday.
But Nick Morey, who continues to walk his beloved Lakeland fells despite the effects of his Parkinson’s, is not feeling too confident about the prospects for treatment which won’t involve a long drive:
“It just makes you think, what the hell is going to happen? Because if one NHS Trust has been advertising a job for the past couple of years and nobody's applied is anybody else in the NHS going to be able to appoint?”
Barrow has been through some hard times and is one of the most deprived areas of the UK but with its. biggest employer the defence firm BAE Systems now having thirty years of guaranteed work building nuclear submarines, things are looking up. The last government labelled it a potential economic powerhouse of the North and there seems to be a continuing will to regenerate the area. But if the NHS cannot provide a decent level of treatment for the world’s fastest growing neurological disease then people like Nick and Michelle will rightly feel betrayed.
I am wondering if Parkinson’s is on the rise post mRNA covid vaccines? We know heart attacks, sudden deaths, strokes all have increased and many doctors believe the mRNA covid vaccines are responsible. I personally now know 5 people, all elderly diagnosed with Parkinson’s in the past two years. Growing up in the 50’s and throughout my adulthood, there was one older uncle who developed Parkinson’s. I worked as a nurse for forty years and saw few older adults with Parkinson’s. I can only imagine how difficult it is to be told your neurology department will be closing. I wonder what the future of the nhs will look like. If the need for care is outweighing resources, we will all be in the same situation. It is already happening in our gp practices around the country. I also wonder where the funds raised by Parkinson’s charities goes? Bill Gates seems to have plenty of money to throw at methane gas produced by cows, perhaps he could throw some of that money towards a real problem like Parkinson’s.