Boris Johnson's mother Charlotte Johnson Wahl has spoken of her painful battle with Parkinson’s as she and fellow sufferers in west London demanded NHS bosses replace their dedicated nurse.
Parkinson’s UK said more than 300 people across Kensington, Chelsea, Paddington and Queen’s Park have been left without specialist Parkinson’s support for over a year.
The charity said West London Clinical Commissioning Group (CCG) failed to replace the previous nurse, who carried out home visits, when she left in December 2017.
Mrs Johnson Wahl, 76, told the Standard that not having a nurse over the past year has left her and others feeling isolated.
The CCG said it instead provides support at hospitals and surgeries, and that it was "not aware" of the charity's complaints.
Mrs Johnson Wahl, a celebrated artist who was diagnosed with Parkinson’s 34 years ago, led a protest as CCG leaders met in Ladbroke Grove. The campaign has also been backed by actress Jane Asher.
“It leaves us entirely depending on hospitals and doctors,” Mrs Johnson Wahl said, “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. 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.”
Parkinson’s UK, which organised the protest outside the Museum of Brands in freezing conditions as CCG leaders met inside, said not employing a nurse is a false economy as it results in more hospital and surgery visits.
Benali Hamdache, the charity’s campaigns manager, 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.”
He added: “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.”
Derek Hipson, 58, of Notting Hill, was diagnosed with the condition in 2012. He said: “If you had a problem of any kind you would phone the nurse and she would turn up the following day.
“She had brilliant knowledge of Parkinson’s, so that was great, but also she spent time with you. She’d talk to you and have a conversation. That’s very important because when you go to see your GP, it’s 10 minutes and you’re out the door.
“It’s ridiculous that she hasn’t been replaced.”
West London CCG said in a statement: “We are not aware of any complaints about local Parkinson’s services, but are keen to understand Parkinson’s UK's concerns and would invite them to get in touch so we can discuss this matter with them further.
“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.
“We are currently working with local hospital consultants, community and primary care clinicians, to review and improve elements of the neurology services in north-west London, which includes Parkinson’s care. Parkinson’s UK will be invited to take part and we would welcome their contribution and the valuable expertise they would bring.”
