My lonely fight with Parkinson's after I lost specialist nurse, says Boris Johnson's mum
Charlotte Johnson Wahl, 76, is also mother to journalist Rachel, politician Jo and radio presenter Leo. She is among more than 300 sufferers in her area who have been left isolated by the loss of the dedicated nurse who carried out home visits. The artist, who had the degenerative condition diagnosed 34 years ago, said West London Clinical Commissioning Group's (CCG) decision not to replace the Parkinson's specialist when she left in December 2017 has left locals with no one to turn to.
She said: "It leaves us entirely depending on hospitals and doctors, costing the NHS much more than it would to pay a nurse to come to your house and have a cup of tea. We had that, but now we haven't got anybody. It's been lonely, there hasn't been anybody I can ring, and I need that."
Mrs Johnson Wahl joined protesters outside a West London CCG meeting to demand NHS bosses replace their nurse.
She added: "It's a lonely thing, Parkinson's. They [health leaders] just don't think they [Parkinson's nurses] are important enough. But when you have Parkinson's, having a reassuring figure is very important. We just need somebody. Somebody to liaise with, so we feel we're not alone."
Benali Hamdache, campaigns manager at charity Parkinson's UK, said: "It doesn't make sense financially, as Parkinson's nurses can save the CCG up to £250,000 a year from avoiding unnecessary trips to A&E or a GP.
"There are so many instances when a nurse can do a simple intervention over the phone. Parkinson's nurses are really an invaluable source of support. It's a really complicated condition and impacts everyone differently, from medication to mental health, and these nurses give people the support that GPs maybe don't have the time or expertise to give.
"West London had a fantastic nurse but unfortunately the CCG here just hasn't understood the value that Fiona [the previous nurse] gave."
A West London CCG spokesman said: "We are not aware of any complaints about local Parkinson's services, but are keen to understand Parkinson's UK's concerns.
"All patients with Parkinson's are under the care of a specialist hospital consultant or doctor who are responsible for ensuring they receive the appropriate care."
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