Ramsgate pensioner calls for policy change after discovering he has life-limiting illness ‘by sneaking a look’ at nurse’s computer

The pensioner says he wants a change in policy

A Ramsgate pensioner has made complaints to the health ombudsman, NHS England and the Care Quality Commission, claiming he only found out he has two potentially terminal illnesses ‘by sneaking a look’ at the computer screen of his COPD (chronic obstructive pulmonary disease) nurse.

The 76-year-old, who asked not to be named as he has not informed his family of his condition, says he went to his GP at Dashwood Medical Centre last Spring after coughing up blood.

He was referred to a consultant for a CT scan and blood tests and then, last October, had another appointment with a respiratory specialist.

On December 13 the pensioner attended an appointment with the COPD nurse for a change in inhaler.

He says this is when he found out he had been diagnosed with emphysema – where the lung tissue involved in exchange of gases is impaired or destroyed – and pulmonary fibrosis – a respiratory disease in which scars are formed in the lung tissues, leading to serious breathing problems.

‘Sneaked a look’

He said: “While the nurse went off to get the new inhaler, I sneaked a look at her computer screen, where I saw an email from my consultant to my GP, and what looked like a diagnosis.  This email was dated three days after I had seen the consultant on October 31.

“When the COPD nurse returned I asked her if I could have a copy of the consultant’s email, and she asked me why.  I said I thought I was entitled to know what my diagnosis was and she reluctantly printed a copy off for me.

“Later, when I got home, I was dismayed to learn the respiratory consultant had diagnosed me with emphysema, and pulmonary fibrosis, both life threatening and incurable conditions, but neither the COPD nurse or my GP had informed me of this.

“I wrote to my GP and asked why it was he hadn’t informed me I was dying of two incurable diseases. I received a letter from the practice manager saying that with over 10,000 patients it was too difficult to copy consultants’ letters to them.”

The pensioner says he was told he was able to request to receive a copy of his consultant’s correspondence but says there should be a change in procedure.

‘I do not want to learn I have a life-threatening condition by letter or email.’

He said: “I do not want to learn I have a life-threatening condition by letter or email.  I wasn’t going to make a complaint but I want a change in policy so I have decided to blow the whistle. The surgery say there is no policy to withhold diagnosis from a patient but I wasn’t told about my condition. How many other people are there that do not know they have a terminal condition? I think the GPs should call patients in and explain the diagnosis, prognosis and treatment.”

The former boxer says he has always kept fit with regular swimming up until he started suffering shortness of breath four years ago and cycling.

He said: “It has affected my life, there are now things that I can’t do.“

‘No policy to withhold information’

A statement from Dashwood Medical Centre says: “The practice does not withhold or have a policy to withhold information from our patients and follows the national NHS guidelines on this.

“Test and diagnostic results are always communicated to a patient either via the GP surgery or from the hospital consultant. Patients can ask the consultant or GP to send a diagnosis or test results direct to them by way of email  or post.

“As a practice with more than 10,000 patients, Dashwood Medical Centre is not able to offer a face to face option to everyone (and many patients would not want this) as we simply would not have the capacity and this is in line with NHS guidance.

“Upon receiving a diagnosis or test results, a patient can contact their surgery or consultant to discuss further if they wish or if there is a requirement for them to do so. In certain circumstances, a patient will ask not to be told a diagnosis, treatment or outcome and that wish is respected by the practice.

“Terminally ill patients at the practice will be offered continued support and work within our MDT (multi disciplinary team). As a team everyone works to provide an agreed treatment plan of care with the patient and family to offer support when they are at end of life.”

‘Support’

A GP at the surgery said patients would receive information about their condition face-to-face, during their consultant appointment, and would always be offered the support they needed. But the pensioner said this did not happen in his case as the person he saw was a trainee working under supervision who said they would refer the details on. He says he did talk to the consultant but not until February – several months after the initial diagnosis.

The CQC confirmed it was ‘in conversation’ with a patient.

An NHS England South East spokesperson said: “We cannot comment on this individual case. The General Medical Council provides some guidance to doctors on how best to communicate with patients but as every case is different it is for individual doctors to use their professional judgement and sensitivity when communicating with patients.”