This week’s episode of Movers and Shakers started as a look at what the Labour government has done in its first 100 days to start work on its promises to improve care for people with Parkinson’s. But it ends up taking a much more long term view of the state of Parkinson’s care - and it’s not a pretty picture.
It’s the powerful words of our guest Prof Michele Hu which take us in a new direction. She is asked how the work of cutting waiting lists is going - for Parkinson’s the long-term target is to get the wait to see a neurologist for diagnosis down to 18 weeks.
What she tells us has jaws around the pub table dropping: “Our waiting time in Oxford for a Parkinson’s new slot, from GP referral to the patient being seen, is 56 weeks…..and the waiting time for the patient to be seen in a follow up appointment is 52 to 58 weeks.”
She says this makes going to important conferences about Parkinson’s very difficult - her clinics are booked up for the next 56 weeks and if she cancels a session then patients can find they are waiting two years for an appointment.
Oxford is not exactly remote or an area of great deprivation, so it is shocking to hear that services for “Parkies” here are so poor - what must it be like in some far-flung parts of the UK? Professor Hu says many patients are not well off but make the difficult decision to go private because the NHS has let them down. And she has a sharp reminder of how lucky we Movers and Shakers are:
“They are not retired judges, TV personalities, BBC presenters or comedians, they do not have strings that they can pull…”
So what’s the answer? The trouble is it needs both long-term and instant action - mending an NHS system that Professor Hu says is no longer fit for purpose, while acting quickly to provide the funding for extra neurology appointments.
Politicians don’t come high on any popularity list but fixing the NHS is not a job that anyone would envy.
Apologies that this summary of the latest episode is shorter than usual but it is being tapped out on a train to Dorchester, the latest stop on my tour promoting my book Sophie from Romania.
Sorry, have you got a book out? I hadn’t heard 😉
The waiting time for anyone with Parkinson’s to see a neurologist is unacceptable. I wonder where all the fundraising money goes? I would like to forward your substack to two old geezers (this is what they call themselves) Professor Carl Heneghan and Professor Tom Jefferson. I have a feeling they may have something to say about this.