Getting a Parkinson's diagnosis from a Neurologist .. Now this is what should happen in the NHS

Over 6 years ago I moved to Sussex from Shropshire. So I needed a new GP.
I found a local GP’s practice & had a consultation with their head GP. His first question to me was “How long have you had Parkinson’s ?” “I haven’t got Parkinson’s” I said but I do have some sort of damage to my spine. The GP said that he’d refer me to a Neurologist & get me an mri scan on my spine. So I got the
mri scan on my spine which showed I had 3 areas of wear & tear damage & nothing could be done for it other than a steroid jab. This was done.

Moving forward 5 years I get an appointment letter through to see a neurologist at my local hospital, 8 miles away. So I went to this appointment not sure what it was about. I saw a neurologist whose speciality was neuropathy, not Parkinson’s. He apologised for the delay in seeing me, but I had got lost in the system. He arranged for an mri brain scan & a datscan which I had within a few weeks.

The datscan was positive & in June 2023 I was diagnosed with Atypical Parkinson’s. He then diagnosed that I also had neuropathy so I was referred to Brighton hospital & tests were done that confirmed this. My next appointment with the neurologist in December 2023 was cancelled as he had left the NHS & returned to Armenia.
I needed to see a neurologist to treat or at least consult with about my neuropathy.

Clearly it would be even more months before I got an NHS appointment so in April 2024 I took out a policy with Benenden health insurance costing me £15.50p a month. You have to have been a member for 6 months before you can use their services. So after the 6 months I got in touch with Benenden & got a letter from my excellent Parkinson’s Nurse referring me.

They have just got back to me saying I can spend up to £2,500 in getting the following …

One initial consultation with a neurologist
An x-ray
An ultrasound scan
A pathology test
One follow up consultation

They also listed three neurologists I could see privately within the £2,500 limit.
Two were at the Nuffield Hospital in Tunbridge Wells [30 miles away] & one in Brighton [30 miles away]. I looked up the three consultants & chose one. his resume read …

Dr xxxxxx has been a Consultant Neurologist since 2000. He holds weekly general neurology clinics here at Nuffield Health Tunbridge Wells Hospital and in his NHS post. He is currently Training Programme Director for Neurology in South London, a role he has done for many years. In this role, he oversees the training of neurology junior doctors and helps develop their careers. In his NHS post at The Tunbridge Wells Hospital he is involved in the care of acutely unwell patients with neurological problems.

Dr xxxxxx obtained a degree in Chemistry at Oxford University which included a pharmacological research project. He then qualified in Medicine having trained at St Thomas’ Hospital, London. He undertook specialist neurology training at a number of hospitals in London including a senior registrar post at The National Hospital for Neurology and Neurosurgery, Queen Square. He was then appointed Consultant Neurologist at Maidstone and Tunbridge Wells NHS Trust in 2000. He is also an Honorary Consultant Neurologist at King’s College Hospital NHS Foundation Trust, London.

Dr xxxxxx specialises in the following neurological symptoms and conditions at Nuffield Health Tunbridge Wells Hospital:

  • Headache
  • Dizziness
  • Imbalance
  • Numbness and weakness
  • Tremor
  • Seizures
  • Blackouts and memory problems
  • Migraine
  • Multiple Sclerosis
  • Epilepsy
  • Parkinson’s Disease
  • Peripheral Neuropathy
  • Motor Neurone Disease
  • Stroke
  • Transient Ischaemic Attack
  • Brain Tumours.

He certainly sounded ideal, ticking all my required boxes, so I phoned his secretary & arranged my first consultation with him for 6 weeks time.

My experience with Benenden is far superior to the service I get with the NHS. It is brilliant that they have covered existing conditions which most other health insurance companies would not …

If anyone has any comments or questions please ask.

Benenden is a not for profit organisation.

Best wishes
Steve2