Health board managers cancelled my life-saving treatment a year ago. It is a pity no one told me
Patient left in limbo after scans were scrapped in secret
‘ I’m concerned my condition is getting worse. It is worrying and I feel I am just being left alone with it
Apatient suffering a rare and serious lung disease has accused a health board of secretly cancelling his life-saving treatment.
Gregory Lambert, 67, had been travelling to see specialists at the Royal Brompton hospital in London since moving to Elgin five years ago.
He became a patient there 14 years ago but when, in 2013, he moved to Elgin with his wife Marie, NHS Highland continued to cover the cost of his treatment.
But in June, Mr Lambert, who has Nonspecific Interstitial Pneumonia (NSIP), discovered his treatment at the Royal Brompton – the home of Europe’s biggest specialist unit treating the condition – had been cancelled after the Highland health board withdrew funding.
They told doctors in London that Mr Lambert would be treated at Raigmore, in Inverness, instead, but no one told him and he is still waiting to see a specialist almost a year after his treatment was cancelled. Mr Lambert said: “It is worrying. I’m just being left on my own with this and nothing is being monitored.
“I’m concerned that my condition is getting worse, and I’m not able to see the consultants who have seen me for the last 14 years who know how it has developed so far.
“I had tests set up by the Royal Brompton because they thought I was getting worse. These were subsequently cancelled by NHS Highland.
“That was blood tests, lung function and an ECG as my heart rate went up to more than 200. I’ve heard nothing from them since they cancelled the funding.”
In July, his GP made another referral to NHS Highland for a specialist to see him, but he has yet to hear about an appointment.
When he was first diagnosed Gregory received chemotherapy and was warned the condition could flare up at short notice, so regular monitoring was essential.
Most people with his condition only survive for between seven and 10 years on average, and Gregory has already lost 35% of his lung capacity since he was diagnosed in 2003. NSIP makes it hard for sufferers to breathe, gradually reducing the amount of oxygen getting to the body. As a result, the brain and vital organs can be damaged and the lungs become permanently scarred.
When he discovered his scans had been cancelled, he contacted the Royal Brompton hospital.
He said: “A general manager at the hospital told me it was nothing to do with them or the doctors who worked there, and it was a decision by NHS Highland not to fund my care. He said that it shouldn’t be a big deal, as the health board would be charged if I was being treated in Raigmore or anywhere else.
“NHS Highland claim that they can treat me at Raigmore, but my argument is that they can’t, mainly because they do not have a specialist consultant in lung disease to treat the condition that I have.”
An NHS Highland spokesman said they do not comment on individual cases, but said: “We can confirm that we have received a complaint and also that a letter about the patient’s appointment will be sent to him in the next few days.
“The Health Service in Scotland is different from that which prevails in England and is organised in such a way that patients are expected to receive their care in their local board of residence unless the necessary level of care there is unavailable.
“That being said, NHS Highland has well-established links with the Royal Brompton Hospital. The respiratory team at Raigmore Hospital can, and often, contacts the hospital in London for advice, and Professor Polkey from the Brompton visits Raigmore eight times a year.”