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A high-level audit of rheumatology patient records is being conducted amid concerns over clinical record keeping, case management and communication within the health department.
The Royal College of Physicians has recommended that Health undertake the audit to "check and confirm" the treatment and care provided after some patients voiced concerns.
The Royal College reviewers are planning to speak with clinicians and other staff later this month.
The review was requested by the Medical Director for Health & Community Services, Patrick Armstrong, who explained that the "...purpose of this audit of patient records is to make sure that rheumatology patients have the most appropriate care plan and that their treatment is entirely suitable to their individual needs."
Pictured: The Royal College of Physicians recommended an audit of rheumatology patient records after questions were raised about clinical record keeping, case management and communication within the department.
He added: "In the meantime, rheumatology patients should continue to take their medication as prescribed and attend their hospital and doctor appointments as normal. If we need to see any patients in person, we will contact them directly."
A significant number of the patients whose lives were being affected by the continual cancellation of hospital appointments and excessive wait times were those engaging with the rheumatology service.
Pictured: Six months ago, islanders of all ages explained the impact cancelled and delayed appointments had on their physical and mental health.
With an audit of patient records in the rheumatology service now promised, Express checked in with two of these patients who both confirmed that the issues were still unresolved — six months on.
Names have been changed to protect the anonymity of the patients who shared their stories.
Express first spoke to Nicola in October 2022, when her Rheumatology Clinic appointments had been postponed eight times.
She had been in a two-week coma just five years ago, and was therefore deemed to be a 'high risk' patient.
Nicola originally had an appointment in the Rheumatology Clinic planned to take place in February 2022.
After being postposed eight times, the appointment was moved to November 2022 and was also changed to a telephone chat instead of an in-person appointment.
In October 2022, Nicola said: "I’ve been on a brand new drug since last July and have yet to see anyone in person to judge its effectiveness. Even the monthly nurse phone calls have stopped! I have blood tests but no idea if anyone’s checking them as I haven't heard anything back.
"Patients are feeling helpless and are losing confidence in those they need to help them."
Pictured: "I’ve been on a brand new drug since last July and have yet to see anyone in person to judge its effectiveness."
This week, Nicola confirmed that she is still waiting for the same appointment, and hasn’t had an in-person rheumatology appointment since June 2021.
She had a phone consultation with the locum rheumatologist in December 2022, and then had her bloods taken and a hand x-ray — which she was told was in preparation for an “early 2023 appointment”.
This week, Nicola received a letter for that appointment which is not due to take place until May.
Nicola explained: “I’m still having monthly blood tests for my drugs [which were initially prescribed in July 2021], even though no consultant has reviewed me for nearly two years.
“Someone, I assume a rheumatology nurse, found I was low in folic acid but the details of this only got to my GP six weeks later — lucky it wasn’t fatal!”
Nicola explained that many patients want to move to private practices, but simply cannot afford the costs.
“The drugs I’m on are £1,000 per month, so [it's] impossible for most people,” she added.
Express also first spoke to Sam in October 2022, when she had experienced multiple rheumatology cancellations.
Last year, Sam said: “I have used the hospital for a few years, but since Covid it has become much more difficult to actually see a consultant.
"My latest appointment for rheumatology has been cancelled several times. My most recent appointment was due to take place last week, but I got a call the day before cancelling again which is very frustrating."
She added: “I’m due an annual appointment with gastroenterologist and that hasn’t happened, and I haven’t even been given an appointment so goodness knows how long it will take! I’m not criticising the doctors or the care I receive when I do see them. Anecdotally, I know it’s not only me affected.
“Ultimately, there’s not much point building an amazing hospital if there aren’t enough staff to run it.”
Similarly to Nicola, Sam has only had a telephone consultation with a locum rheumatologist since Express last spoke to her in October 2022.
“It’s not ideal but better than nothing,” she said. “Things could and should have been much better.”
Sam explained: “I have quarterly blood tests but don’t get the results, I assume everything is ok but I don’t know for sure. I am prescribed immunosuppressants and have lived through a pandemic with little more than a letter telling me to ‘shield’.
“My GP didn’t know I was prescribed immunosuppressants, which is fairly important during a pandemic as it meant I wasn’t called for my vaccination! I managed to resolve this after several phone calls.”
Pictured: "...I wasn't called for my vaccination!"
She added: “There may have been communication problems in the department but there were also communication problems with patients. I know of some patients who were left on drugs, intended for short term use, throughout the pandemic.”
Sam said that when she first started on her journey with the rheumatology department, she had “regular appointments, meetings and phone calls with the rheumatology nurses and the level of care was very good”.
However, now, she wonders if she’ll ever get a face-to-face appointment again.
Sam explained that rheumatology patients often suffer with more than one autoimmune disease which means that treatment and care is not always straight forward.
She said: “Sadly when you have a chronic illness, it means lifelong hospital care and most private insurance companies will not cover this so there is no other option available.
“I don’t have any complaints about the doctors, nurses or other health professionals who are doing their best but the States of Jersey and hospital management have allowed this situation to arise and allowed it to last for years.”
“Rheumatology patients deserve better,” added Sam.
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