The first time I needed to visit a consultant in the UK, I was amazed at how smoothly things went. I’m Italian, and I was used to how these things are done in Italy.
In Italy, if I needed to see a specialist, my GP would give me a consultation request, which I would then take to the hospital to book an appointment. Once the consultant had given me a prescription, I would then have to take it back to my GP to dispense the medication: a back-and-forth experience between the GP and consultant.
So I was delighted when, here in the UK, I got a letter from the hospital with the time and date of my appointment, all arranged by my GP. So smooth! I was telling all my Italian friends: this is how a civilised country looks after the health of its people. But that was more than 20 years ago.
In 2017, my partner Nick was diagnosed with Parkinson’s Disease. Nick is a graphic designer and comic artist, and the diagnosis shattered his sense of self. If he couldn’t draw any more, who was he?
Under normal circumstances, Nick would only see a consultant neurologist once every six months. We were given the contact details of two Parkinson’s specialist nurses who could be contacted with any problems in the meantime.
Everything was fine until April 2022, when Nick began to suffer from insomnia and restless leg syndrome, meaning he was unable to sleep for days at a time.
It was then we discovered that both Parkinson’s nurses had left, and had not been replaced. Previously, we would have phoned a nurse and the whole thing would have been sorted out in a week. Now, we were faced with a three-month wait before the next appointment with the neurologist was due.
We asked our GP to refer Nick to the neurologist in the hope of speeding things up, but the system is now so underfunded that the GP could only arrange an appointment around the time Nick would have seen the neurologist anyway in July.
The neurologist recommended a change in Nick’s medication. Unfortunately, it didn’t work, and Nick’s symptoms worsened. Without Parkinson’s nurses, he had no choice but to sit tight until his next appointment with the neurologist – seven months later in February 2023.
We wrote to our MP, Cat Smith, and explained how the lack of Parkinson’s nurses was affecting Nick’s health and mental wellbeing – and mine too. Cat gave us all the support she could.
The second consultation took place on 7 Feb, by phone because the neurologist no longer does his twice-yearly visit to our local hospital, and Nick was now too ill to travel to his clinic in Preston.
The neurologist recommended a new drug and drafted a letter to Nick’s GP that same day.
We then waited for the new prescription. After five weeks, we received two copies of the letter – one to us and one to our GP, sent to us by mistake. We hand-delivered the GP’s copy the next day. We also noticed that although the letter had been dictated on 7 Feb, it hadn’t actually been typed up until10 March.
Nick then had to phone the GP and pharmacy the next day to make sure the prescription had gone through. This would normally have taken another month, but a kind soul took pity on us and ordered the prescription over the phone.
The prescription finally arrived in Nick’s hands on 20 March – almost six weeks later.
It took almost a year to sort out new medication. This involved our MP, Preston Hospital Trust, PALS and Healthwatch Lancashire. Previously, all this would have been resolved with a simple phone call to a Parkinson’s nurse.
The Conservatives hold the principle of value for money dear to their hearts. How much money has been spent on this merry-go-round of emails, phone calls and multi-agency bodies? This includes a consultant neurologist who, as he pointed out, normally spends his time diagnosing new patients, not dealing with the day-to-day problems of existing ones.
Cutting services provided by specialist nurses serves only to worsen the situation of those suffering long-term illnesses.
Parkinson’s is a degenerative illness: every moment is precious. As Nick put it, he’s just wasted a year of his life. It appears that Nick’s remaining time is not valuable enough to be part of the considerations of those who run the NHS.
So, over the past 20 years, how has it come to this? And what should I say to my Italian friends now?
