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How hospital appt chaos is affecting lives… in patients’ own words

How hospital appt chaos is affecting lives… in patients’ own words

Monday 26 September 2022

How hospital appt chaos is affecting lives… in patients’ own words

Monday 26 September 2022


Staff shortages, covid and administrative errors have led to the cancellation of thousands of hospital appointments in recent years… Today, we share the stories of how patients' lives are being affected by the chaos.

From a patient whose untreated breathing condition is leaving him too scared to sleep and the university student who has been waiting for braces for a decade, to an islander grieving the loss of a family member whose cancer scan was delayed...

Express has spoken to a range of islanders of all ages who explained the impact cancelled and delayed appointments have had on their physical and mental health...

Names have been changed to protect the anonymity of the patients who shared their stories.

Too scared to sleep

James, who has had multiple Respiratory Clinic appointments cancelled

“It all started back in November 2021, when I woke up choking unable to breathe due to having sleep apnoea. It was a horrible experience and thought my time was up," James said.

“I went to my doctor and they booked me into Ear, Nose and Threat (ENT) Clinic at the Hospital.”

James was then seen at the ENT Clinic on 1 April 2022 and sent home with monitoring equipment to monitor his sleep pattern overnight. He was told that he would need to go back to the ENT Clinic again so that they could provide him with a machine to help my breathing through the night. 

However, he has since not heard anything else from the ENT Clinic and has instead been referred to the Respiratory Clinic.

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Pictured: James shared pictures of his numerous hospital appointment cancellation letters.

Sharing copies of his appointment letters, James explained: “As you can see, I received the first letter in May for an appointment on 28 July which then got pushed back to August. I then received a call couple of hours before appointment to say it’s been cancelled and rescheduled until November then changed to August again. 

“The appointment was then cancelled and delayed until October then changed to September. One hour before my appointment this month, I received a phone call informing me that it had been postponed again until November.

Whilst waiting for an appointment for almost a year, James has spent many nights being too scared to sleep in case he woke up choking again. 

He also expressed his frustration at booking the time for appointments off work in advance, to then be told less than an hour before that it has been cancelled.

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Pictured: James has suffered many sleepless nights over the past year.

James said: “If there are issues such as covid, a backlog of appointments, or not enough staff then it would be nice for the Government to let people know rather than just keep sending out letter after letter informing patient of cancellations and new appointment times with no explanation.” 

He added: “We are very lucky to have the health care system in Jersey and I could not praise all the staff at the hospital enough for the work they do. I’m sure if people were made aware of the problems at the hospital then they would be more sympathetic that their appointments are continually cancelled and changed. 

“Maybe it’s time that the voices of the health care workers were heard without fear of recrimination, after all they will know better than anyone what the root causes of these issues are.”

High-risk, but no one is checking on me

Nicola, who has had Rheumatology Clinic appointments postponed eight times

Nicola was in a two-week coma just five years ago, and is therefore deemed to be a 'high risk' patient.

She originally had an appointment in the Rheumatology Clinic planned to take place in February this year. 

After being postposed eight times, the appointment is now scheduled to take place in November and has also been changed to a telephone chat instead of an in-person appointment.

She 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."

I just have to keep taking it with no idea what’s happening

Emily, whose new heart medication is yet to be reviewed after six months

Emily was diagnosed with a heart condition at a consultation in February. She was given medication to treat this, and told that she would have an appointment in three months to see how she was getting on with the new medication and if her symptoms were reducing.

However, Emily had still not had this appointment which was initially meant to take place in June of this year.

She explained: “The first letter came through for an appointment in June, which was then moved to August, then moved again to a later time on the same date in August. 

“On the day of the appointment in August, I got a letter in the post saying it had been moved to the following week. Then I received another letter saying it had been moved again and would be at end of September. 

“I have just received a letter saying my appointment won’t be until January 2023 now."

Emily's medication was supposed to be reviewed within three months of her starting it, but it will be almost a year by the time she is seen in January.

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Pictured: "I just have to continue to take the medication and hope for the best.”

Emily said: "I just have to keep taking it with no idea what’s happening. Since starting the medication, I can feel positive changes like my heart rate isn’t crazy high all the time and I’m not fainting multiple times a day, but I don’t know much about the condition or what I should or shouldn’t be doing.

"It would be helpful to get more information from those that diagnosed me and how to live with it.

“Until I have an appointment, I just have to continue to take the medication and hope for the best.”

The missed scan that turned out to be cancer

Louise, who lost a family member who didn't receive an urgent scan when she needed it

Delays in hospital appointments have affected Louise personally, with her having multiple appointments cancelled the day before they were due to take place.

However, she is most concerned about the impact that delayed hospital appointments are having on older members of her family.

Louise explained: "A family member was missed off the list for an urgent scan, which was later found to be cancer. The delays with starting chemotherapy and not looking into things promptly cost her life and we lost her this year."

She added: "Yet another family member who has skin cancer is still waiting for another appointment for it to be removed.

"Care at the hospital is awful; the waiting is costing more lives than they think." 

Forced to pay for ovary check

Lynn, who was told she'd face a lengthy wait to check on potential ovarian cysts

Lynn needed a scan on her ovaries, and was told that the wait would be nine months.

After having already had ovarian cysts twice in the past, she was scared this would be too long.

Lynn explained: "That’s too long if the cyst was cancerous, so I paid privately for my scan which is disgusting.” 

Waiting for braces since I was a child

Sasha, who has been on the Orthodontic waiting list for a decade

After 10 years of waiting, Sasha finally got her first Orthodontic appointment during the summer after her first year of university in the UK. At this appointment, she was then informed that the whole process of having braces would now take longer due to the fact that she was spending much less time in Jersey due to her studies off-island.

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Pictured: Sasha feels insecure about the prospect of wearing braces at university, after having been on the waiting list for over 10 years.

Sasha said: "It's so frustrating then I've been living in Jersey full-time for the past 10 years while waiting for an appointment, and now that I've finally got one I am being told that it will take even longer as I am in the UK a lot of the time for university."

After her initial appointment, Sasha was sent for X-rays then booked in for one more appointment before she was due to return to university in September.

However, after having completed the X-rays, the following appointment was cancelled due to lack of staff and it will now have to wait until the next time that Sasha is back in Jersey inbetween university studies.

She has now left to go the UK to start her second year of university but has still not had her braces put on yet.

She said: "I've always been self conscious about my wonky teeth. All my friends at university have already had their braces removed and can't believe that I haven’t even got mine on yet.

"It might sound like such a minor thing but I think having braces in my twenties will also make me feel really insecure because of how young most other people are when they get them. It's such a normal thing when you're a young teenager so no one cared at school, but barely anyone has braces when they're in their twenties and at university.

"It was far too expensive for my family to be able to afford to go private to get them when I was younger, but we never thought the waiting list would end up being over 10 years!"

Is my pimple dangerous?

Amir, who has been waiting 16 months to find out if a growth on his face is dangerous

Amir went to his GP with a spot on his face, which he described as looking like an “under-the-skin pimple”.

After a quick examination, Amir’s GP said: “Well, let’s hope it’s not cancer.” He was then referred to a specialist dermatologist at the hospital.

Amir explained: “It took 13 months to finally get appointment scheduled for mid-August. A month prior to this appointment, it was rescheduled for another few weeks after.

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Pictured: Amir is worried about a potentially cancerous “under-the-skin pimple” on his face.

“On the day of appointment, I unfortunately had to call the dermatology department to cancel my appointment due to a family emergency. 

“However, I assured the team that it’s very important for me to be seen and they arranged the next appointment possible, which was in the last week of September.”

Amir added: “Just a week after that phone call, I received a letter which informed me that my appointment had been pushed forward another three weeks. 

“So here I am, 16 months later with potential cancer and nothing has been done about it yet.”

My heavily delayed appointment was cancelled the day before

Sam, who has experienced numerous Rheumatology cancellations

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.”

My foot pain was so bad I couldn't work

Alisha spent months in pain before getting an X-Ray on her feet

Alisha had been having serious pain in her feet for months, which had got so bad that she couldn’t work.

She ended up having to go to A&E but was sent home and told that she had to wait over a month for an x-ray on her feet.

Alisha said: “I then went privately to doctors and got a referral for an MRI, but I was told I'd have to wait up to eight months. 

“Meanwhile, I still can't work due to the pain.”

It then took over two months for Alisha to get insoles to help her feet pain, and another four months for her to get an appointment to see the physiotherapist.

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Pictured: It took over two months for Alisha to get insoles to help her be able to work again.

She had hoped that after her physiotherapy appointment she would see improvements, but was left disappointed.

Alisha said: “The physiotherapist just gave me a bunch of videos to watch with exercises to do but didn't even explain how to do them properly.” 

She added: “I also asked for a referral to a gastroenterologist over four months ago and still haven't heard anything back from them either.”

I'm lucky I work for myself

Jenny says she was lucky to be able to attend a gynaecology appointment at very short notice when a last-minute one came up

Jenny was referred by her GP to the gynaecologist at the hospital to check an auto-immune disease. She was on the waiting list for months.

In March, she was contacted by the hospital for a last-minute appointment due to cancellations.

As Jenny works for herself, she is "100% available" and was able to attend the appointment with very short notice. However, she suggests that it would be impossible for most other people to attend an appointment with such short notice.

At her appointment in March, the Gynaecologist decided that Jenny should return for another appointment. It was agreed that Jenny would stop taking her medication for three months prior to this appointment so that the Gynaecologist would be able to check for the suspected auto-immune disease. 

The appointment was due to take place in October 2022.

Jenny said: "Just a month before my 3 October appointment, I received a letter from hospital cancelling it and then another letter saying I’ll get a letter with the new appointment date six weeks before it.

“As I have already stopped taking my medication for four weeks, I feel that I will need to book an appointment with a private Gynaecologist so they can check my issue at the appropriate date (around early October) and that's expensive.”

She added: “I realise that my issue is not urgent but the process to get checked is fastidious as I have to stop my medication at the correct time. 

“Also, the medication I am taking is not that great for the body so it's quite important for me to know if I still need to take it and for how long as it is supposedly for the rest of my life.”

Arthritis patients are bewildered and desperate

Terry Le Main from the Jersey Arthritis Association

Express heard from a very large number of patients complaining of cancelled or rescheduled appointments at the Rheumatology Department, which focuses on the diagnosis and treatment of rheumatism, arthritis, and other disorders of the joints, muscles, and ligaments.

As a result, Express contacted Terry Le Main of the charity Jersey Arthritis Association.

He explained: “In the last 24 months, the subject regarding the Rheumatology Department and the cancelled and delayed appointments and patients being unable to see or get help for their Rheumatology or Arthritis has become a major issue and concern.

“In the last 12 months, it has got to a crisis point. As former Chairman and current Trustee of Jersey Arthritis Association, I get private messages from bewildered and desperate people wanting to know what is going on, asking can I assist, can I find out why they struggle with pain and loneliness, what is going on at the Rheumatology Department at Overdale?"

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Pictured: Rheumatology patients seem to be some of the most commonly affected by cancelled and rescheduled appointments.

Mr La Main went on to explain that he had recently heard a senior hospital manager claim on TV that 250 patients were awaiting appointments, but noted that this does not include those awaiting follow-up appointments - likely to be several hundred more.

From what he has heard from those contacting the JAA, average appointment cancellations "are about six and the worst 12 per person."

Mr Le Main said: “I recently attended an appointment with a disillusioned consultant for my own medical problem. The consultant had had given his notice and was leaving that week without a post and returning to the UK after working for Health for several years. He is a much-loved and respected consultant.

“I looked at him and said, ‘can I ask you a simple question’, ‘yes’ he replied. My question was ‘If the new Jersey hospital was opening this week would you still be leaving?’ His answer was ‘Yes'."

The Health Minister's response

Responding to the patient concerns shared by Express, new Health Minister Deputy Karen Wilson said: “Over the last few months islanders have experienced unacceptable delays and cancellations regarding operations at the hospital. It is unacceptable to me as Health Minister that patients continue to be detrimentally affected.

“I recognise that in some cases this may be due to matters outside of the control of those charged with providing hospital-based services – in particular and the availability of ongoing care and support in the community for those who are medically fit for discharge and workforce supply issues. However, the situation cannot continue."

She went on to say she will be "meeting with officers as a matter of urgency", adding that she "can assure [those] who are affected by appointment delays/cancellation of operations that they will receive a future date for their operation and action will be taken to reduce the delay.”

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Pictured: Deputy Karen Wilson, Minister for Health and Social Services.

Director of Clinical Services at Health and Community Services, Claire Thompson added: “We know that it is very worrying and unsettling for patients who have to have to wait for any operation. This is especially true when someone has a date given for an operation, and then it is postponed. 

“We recognise this is always disappointing for the patient, particularly if they are in pain as this can really affect their quality of life. It is important to emphasise that cancelling operations is always kept to an absolute minimum and is only done when continuing would impact our ability to maintain emergency capacity.

 “We are determined to improve the situation and the experience of our patients. We apologise to anyone affected by having their procedure postponed for any distress caused.

 “The department’s approach is that patients are always given a new date for their operation or procedure as soon as possible - it is unacceptable for patients whose operations have been postponed to be told that no date can be provided 'in the foreseeable future'.”

She explained: “Patients are always seen in order of clinical priority, and then chronologically. Operations and procedures are defined as urgent, soon and routine. So, patients who require urgent treatment are always seen first. This is always our approach when we have to cancel or re-schedule procedures.

 “The issue of patients currently occupying hospital beds who are fit for discharge but are being kept in hospital because they require care or support required for in the community stands at 41 as of Wednesday 21 September.

“This is an ongoing issue and colleagues in the Hospital actively work with their counterparts in the community on a daily basis to ensure patients are cared for in the most appropriate environment, as soon as possible.

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Pictured: There are currently 41 patients occupying hospital beds who are fit for discharge but cannot get the continued care they require in the community.

“Health and Community Services has a number of initiatives and processes to ensure we are maximising our ability to provide planned care to a time frame that is consistent with high quality care and clinical outcomes.  As is described, HCS across both its general and mental health areas have higher numbers of patients who are medically fit for discharge.  This is impeding on the beds we have for elective patients.

“We are working with the private industry across the care and domiciliary system to identify, support and enable this area to maintain capacity which will by virtue support discharging patients from HCS. 

 “We are focussed on both internal issues such as operational flow improvement, high utilisation of Day Surgery capacity, commencement of a Theatre Direct service, monitoring of waiting lists and external issues such as fiscal stimulus, support with staffing and discharge planning policy to deliver the improvements required.”

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Comments

Comments on this story express the views of the commentator only, not Bailiwick Publishing. We are unable to guarantee the accuracy of any of those comments.

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Posted by IanSmith97 on
It is beginning - sadly - to look like that publicly funded health care ie via taxation, that such health services are run for the benefit of the organisation and not those it is deemed to serve.
Posted by Martin on
I expect the ONE HUNDRED MILLION POUNDS WASTED so far on not building ONE brick of the new hospital had been allocated to the ailments listed above then likely all would have been sorted & STILL we would be at the EXACT same stage! = NO NEW HOSPITAL!

The public seriously need to consider WHICH current Politician/s caused this - & vicarious liability should apply to past Politicians who have been supremely incompetent & take them to task in a civil action! This would deter further reckless actions by current & future Deputies!

NO ONE should have control of such VAST sums of OTHER peoples money ( The public purse ) & be totally devoid of recourse?
Posted by Jennifer Thompson on
Why oh why did they not keep a convalescent place, as Overdale was, then you wouldn't have this backlog of patients (in hospital) with no aftercare?
It's been knee-jerk reaction all through.
Also, if, as we've been told, there used to be more people on the island, who have now left, due to high rents & too expensive to live, what's happened to these empty flats etc?
Posted by Ann Robbie on
The top management team at HCS should be replaced. What is the point of paying these UK imports the vast salaries if they are incompetent. Our health service is rapidly becoming third world. In fact the healthcare in South Africa was better than in Jersey.
Posted by Keith Marsh on
So who is firefighting this week ?
Because the state of the hospital service is certainly as serious as a massive fire.
People are not seeing Specialists ~ WHY ?
People cannot get their Operations done ~ WHY ?
Who is in Charge ? ~ it seems like Mr Blobby ~ because nothing is getting sorted.

People are going Blind ,
Pople with R.A. can't see a specialist.
People with Breathing problems, keep getting their appointments bounced into the future.

Come on CHIEF MINISTER, the buck stops with you ! ~ MEND it
Posted by Esporta Johnson on
It is sad that the new health minister tries to position the unacceptable delays and cancellations as a phenomenon of the last few months. It would take 10min of Googling to find similar apologies mostly from Caroline Landon back in 2019, 2020 and 2021. Last year she reassured us of the long waiting lists being reduced to acceptable levels by Sept 2021. More managers got hired and promoted and the lists got longer. It is now over 13.000 patients waiting for their first appointment or a surgical procedure. The same cancellations and delays affect patients waiting for follow up appointments but they are not being reported. We keep hearing new stories and new excuses yet I agree with Ann that the top
Management of Health must go or nothing will change. They are incompetent, they have only worst NHS experiences, some very inexperienced individuals got promoted to senior roles. With all these titles they were not able to focus on true priorities. They spent tones of money and hours discussing new care model based on flawed assumptions. Despite a very reassuring smile of the minister, and the previous smiling photos of Ms Landon nothing will change if the top of the organisation stays in their roles. There is only so much that you can achieve with fear, intimidation and bullying. We will lose more nurses and doctors, others will burn-out, we will get more locums, and other temporary staff. I am not sure if we even can outcompete NHS in the fight for best Locum talents. The best advice is to stay healthy until our politicians realise that enough is enough.
Posted by Aston Francis on
The new Minister for Health herself former NHS nurse will not get rid of the incompetent (also former NHS) leaders and nothing will change unless the CHIEF MINISTER decides to step in. The tried and tested strategy of delaying publications of the waiting lists on gov.je is still in place. It is 29th of September and the numbers of patients waiting in August have not been published yet I bet we have five or more managers of different sorts responsible for the management and analyses of the waiting lists and they are expected to publish timely updates before 20th of the following month. The patients within priority groups are not being seen chronologically as suggested in the article. Looking at monthly variations of median waiting times for various specialties demonstrates that 'chaos' is an understatement. We can no longer accept this game of smoke and mirrors, of excuses and reassurances. This is not politics - these are people's lives. We need new leaders in the Health Department more urgently than we need the new hospital. We don't want Jersey to become another mid Staffordshire.
Posted by Tilly the Toad on
Just out of interest, how many beds did The Limes have before it was shut down?
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