David, Karen and Rhiannon are just three people among tens of thousands in Wales for whom living in pain for years has become the price of the crisis gripping our health services.
All three are among huge numbers of people who have had to wait years for a simple, routine operation to relieve the agony they face on a daily basis and allow them to live a normal life. A WalesOnline investigation has highlighted the shocking numbers of people forced to live — and in thousands of cases die — while waiting for help to ease their suffering.
We found that 15,581 people have died while waiting for an operation to relieve their suffering since 2016, with some having waited over six years and still not had their procedure. The procedures they were waiting for were mostly not life threatening - and were unlikely to have caused their death - but would have caused them significant distress and prevented them leading active lives in their last years. They are some of the biggest casualties of our overstretched hospital services.
Politically, the Welsh Government's health minister Eluned Morgan has tried to focus the media's attention on a small fall in the number of patients waiting over two years for an operation, down from 70,417 in March last year to 54,491 in October and 49,500 in November. Yet this is a problem far worse in Wales than elsewhere. In England, huge numbers of people are on waiting lists but waits over two years have been eliminated.
We found that two-year waits are not the only problem in Wales. More than 9,000 people at the time we put in our Freedom of Information Act requests had waited more than three years. Of those, 8,700 had waited three to four years. Some 407 people had waited four to five years. Thirty people had been waiting five to six years. And there were at least two people who have been living in pain waiting for treatment for more than six years.
We put our findings to Eluned Morgan and also spoke to a consultant working on the frontline in the NHS about the policies they would like to see put in place to help resolve a problem that has been made far worse by Covid but had been building for many years before that.
Our special report highlights the huge toll this quiet scandal is inflicting both on people and society as a whole. The victims of the waiting list crisis are often unable to work, find it hard to exercise and can't help look after children or grandchildren. It has an impact at every level from the individual to families and the entire economy.
'I've spent six years on the waiting list and counting'
Karen Warren's story starts six years ago in 2017. Like many of the people on waiting lists, her condition contributed to her having to stop work. The former secondary school teaching assistant, based near Three Cliffs Bay, Gower, was referred by her GP to an orthopaedic consultant at that time because of her terrible knee pain.
Over the next two years she had ongoing x-rays and the occasional check-up appointment, but had to be referred all over again by her GP when the orthopaedic consultant changed hospitals and her name was not passed on to the new consultant.
It wasn't until February2, 2020, that Karen was finally added to the waiting list for a right knee replacement. She was told it needed to be done urgently, and that she'd need the left knee done very soon afterwards. Then the pandemic hit. Karen heard very little from the hospital until October, 2021, when she was given a check-up appointment with the consultant. They reiterated that she was an urgent case. Then the second lockdown hit, causing further delays.
Karen finally had a review in August, 2022 - two years after being added to the waiting list in 2020, and nearly five years after initially being referred to the hospital by her GP. They told her that the urgency of her case had been downgraded – as had many others – and that she faced potentially another three to four years of waiting.
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Karen used to be a secondary school teaching assistant but had to give up work two years ago, largely due to the impact of knee arthritis on her mobility. She told WalesOnline: “I use crutches all the time. I can still drive but need knee supports. When I get to where I am, I have limited mobility, I can't walk to my corner shop or to my friend's house up the street. It’s life changing. You feel so, so frustrated because you get angry thinking this shouldn't be happening. Each year it gets worse and worse.”
Like so many people, Karen has understandably really struggled with both physical and mental health over the half a decade she has been waiting. “I don't believe that I have a really bad diet,” she said. “I am unable to burn calories. People will say you should go to the gym, you should be exercising, you should be walking. But it's impossible. Today, because I've been out and about and I've had to walk on the crutches between bus stops, I will pay the price tomorrow. I know I will. I always do.
“It is frustrating that it is not just your physical health, but it's your mental health, your lifestyle. Everything for me stopped. I have very little social life, I used to do quite a lot of active things. This has knocked my self-confidence massively. I worry about it a lot more than I used to, because I think about things like 'How far have I got to walk when I get somewhere?'
How bad are the waiting lists?
Karen says waiting for an operation is “a very lonely place”. And there are a lot of people left to feel alone in that way.
The number of patients waiting for an operation used to be fairly stable in Wales at around 400,000. Since 2011 this gradually increased until it reached 470,000. Then once the pandemic hit it soared to over 750,000. The way these stats are calculated is by looking at what the NHS calls patient pathways and look at each individual request for treatment. If you had been waiting for a hip operation for several years but then came to need treatment for something else, you would be counted in the list twice.
When it comes to the longest waits of more than one or two years they have also massively spiked. There were points since 2010 that no-one was waiting over two years for a procedure in Wales. Now it is still over 55,000 after peaking at over 65,000 earlier in the year. By contrast, England has managed to clear its entire two-year wait backlog.
The Welsh Government argues that it is not fair to compare English and Welsh waiting lists as they are not counted the same. A WalesOnline investigation found that this was not entirely correct and it is possible to compare the two countries with certain caveats.
The Welsh Government regularly publishes the amount of people on waiting lists as well as the people waiting “over two years”. However it does not publish how many people are waiting well beyond that. To try and get a clearer picture WalesOnline put in a Freedom of Information request to all seven of Wales’ health boards to try and get a picture of how bad the waits were.
As of the end of October, 2022, the results made pretty grim reading. As mentioned above, we don't yet have figures for the health board in Swansea Bay.
Over 9,000 people have currently waited over three years for a procedure and over 400 of them had waited between four to five years and over 30 exceeded five. The Betsi Cadwaladr health board in north Wales has the most waits over three years but it is also the largest health board (Powys is missed out because it outsources its procedures to other health boards so technically has none).
Has Labour got a grip on this problem?
Ultimately, the Labour-run Welsh Government is responsible for the NHS in Wales. The party has been in power in Wales (and therefore running the health service) for over two decades. The inability to get a handle on the situation has been a constant sore for Welsh Labour.
In December, 2022, overall waiting lists in Wales went down for the first time in nearly three years. Despite their previous protestations that comparisons between England and Wales were "unfair", the Welsh Government were desperate to point to the fall in numbers in December and contrast it with England. Health minister Eluned Morgan told WalesOnline just last week: "What's really heartening is that we've seen the waiting list coming down across Wales for the first time, that's not happening in England."
OK, putting aside that apparently we can now compare the UK and Welsh governments, it is worth looking at what this fall actually means and assessing if this is something the Welsh Government can hang their hat on.
The first thing to say is that clearly any fall in waiting lists after years of increasing is a good thing and a testament to the hard work of people in the NHS. However when we look at the numbers we see that this celebration needs to be tempered. The latest figures are for October, 2022, and showed 753,293 outstanding procedures. This is down from 754,677 the month before. This is less than 0.2% or 1,384 people.
This number looks even less significant when we consider the number of people who have actually died while on waiting lists. These are people who are literally living out their remaining years in pain and discomfort while they wait for their much-needed treatment. This isn't to say they died because of the thing they are waiting for, but that the reason they no longer require treatment is that they have died before the NHS could deliver it.
Now this is a hard thing to quantify, but WalesOnline has put in a freedom of information request to every Welsh health board to try and put a number on it. The figures are startling.
Since 2016 over 15,000 people have died while waiting for operations in Wales. The annual figures have more than doubled since 2016. The overall figure is likely significantly higher for two reasons. Firstly, Swansea Bay Health Board could not return the figures to us despite having more than three months to do it (some health boards came back within a few weeks). Secondly, the Cardiff and Vale figures are likely much higher because they don't count all deaths in the community.
Even if we take the lower figure, there were still 2,774 people who died while on these waiting lists in 2022. This adds some pretty stark context to the Welsh Government celebration that the overall figures went down by 1,384. WalesOnline put this to Eluned Morgan asking: "Some of those waiting lists are coming down because people are dying while they're waiting for that procedure. Just in Betsi, 1,600 people died while on a waiting list. Do you have any idea how much of that contributes to the actual fall in Wales?"
On the same day she suggested that people should exercise more to help the health service she replied: "We do a lot of cleansing of the data just to make sure that we know what is going on. There are lots of examples where, for example, people use physiotherapy and say ‘actually, I don't need that treatment anymore’. So it is important that people understand that there are other reasons why people come off waiting lists as well. But in terms of people who are sick, you know, we all die at some point. And so if you look at the ageing population, you look at the numbers and the profile of people in hospitals, the vast, vast majority of them are over 65. And so you are going to get to a place where obviously people are likely to die at some point. And some of those people will be on waiting lists."
In response WalesOnline pushed saying: "Clearly everybody dies at some point. It's not about blaming for that. But it's about asking how much are those deaths contributing to the fall in waiting lists?" To this Ms Morgan said that she "doesn't think that will be significant" but "it's certainly something that I can look into further".
Desperate times call for desperate measures
Crippled by years of pain, some people in Wales are turning to drastic action. One of these is 68-year-old Rhiannon Rowley from Llandeilo. She has lived with hip osteoarthritis (OA) for the last four years. The pain in her right hip increased dramatically in the middle of the pandemic. She went to her GP in the autumn of 2021, hoping for a swift resolution. The GP, whilst helpful, was only able to offer basic pain relief medication which didn’t help much, so she was referred to a physiotherapist. After two sessions, the physio referred Rhiannon to an orthopaedic consultant, believing a hip replacement would be her only option to end the pain.
Rhiannon has been waiting since then, over a year, for an appointment with the orthopaedic consultant, and still hasn’t been given a date. This is before she has even managed to get on the waiting list for an operation. At time of writing, Rhiannon is flying to Lithuania to have her operation done privately at the Nord clinic.
Rhiannon said: “The pain is debilitating. Sleeping is really, really difficult. Every time you move it hurts and you wake up, so sleep for me has become a series of naps basically. That in itself is debilitating, let alone the pain.
“The pain is always there, it never goes away. It affects your relationships with other people, how patient you are with others. I’m a lay minister with the church in Wales, so I take services – this has become much more difficult. Standing and sitting to do a sermon is very hard.
"I am a keen walker and not being able to get out and about is horrible. Every single bit of my life is impacted by this and then you have to work really hard not to allow it to be all consuming."
It has also impacted Rhiannon's ability to work. She runs a successful organic mattress business called Abaca but the pain is really affecting her.
“It has been four years and I still haven't seen a consultant," she said. "The pain also affects my ability to work. Instead of being out and about meeting people, which was always my role in the business, I’m now sat on my office chair all day. I can’t face situations where I’m having to stand and chat to people, or even sit. It can be really embarrassing to realise you don’t have the leverage to stand up from a sitting position, so I just avoid those interactions altogether.
“This last year of my life has been a write-off. When I realised it wasn’t just going to be the wait for a consultant, but another three years afterwards on the waiting list, I decided I’m not willing to continue like this. It wouldn’t take all that long before I’m no longer able to drive, which means I wouldn’t be able to work. I’m not willing for that to happen to my life."
This trend of travelling abroad is a step many desperate people in Wales are now taking. David Haselgrove, 70, from Anglesey, had a hip replacement in Lithuania on September 29, 2022. David was diagnosed with arthritis in 2018, and in August, 2021, the GP referred him to an orthopaedic consultant to discuss surgery, as the arthritis had become much worse.
David phoned the hospital after 6 months of waiting for a consultation and they told him the waiting list was 111 weeks from the point of referral. He phoned a few more times after that, but all he was offered were stronger painkillers. Further x-rays showed there was no cartilage left in his knee. He said the pain had become “debilitating”:
He said: “I had no patience for people due to pain. We foster children, so that wasn’t ideal. There were so many things I couldn’t do, I could hardly get in the car for example. I was worried how the painkillers were affecting my stomach too.”
David wrote a letter to the hospital to say how bad things had got and that he was willing to travel anywhere to get his surgery. In reply, the hospital said they could reduce his wait by only 1 week. His GP also said they were unable to refer him to an English hospital, even though David had found one willing to perform his operation in 2-3 months. He explored, found a suitable hospital in Ireland, but the process was “slow and complicated”, so he gave up in the end.
David started thinking about the private route and in May, 2022, paid a consultant at a private hospital in Shropshire to review his knee. The private consultant said he would certainly need a knee replacement. (If David had been given the operation in the first 18 weeks of waiting, he likely would not have needed a total replacement, only a ‘scraping’ surgery - but the delay led to deterioration in his joint which required a full replacement.)
Then, after a chance meeting in Cambridge train station, David decided to fully pursue private surgery. He’d struck up a conversation with a man who was walking down the platform on a crutch, who told David that he was on his way to get his hip replaced in Lithuania. David spent a couple of weeks researching where to go himself, but decided in the end to use the same clinic in Lithuania. He described the experience at the Nord clinic as “amazing”, despite the money he had to spend on it.
“It was a last resort, people don’t realise how debilitating it is," he told WalesOnline. "It cost £8,500. It was a lot of money. Going to Lithuania was a real eye-opener. What are we doing in this country? We have gone to pot.
How do we get out of this mess?
While it is perfectly understandable that people are turning to overseas options to get out of their years of pain, this is also presenting a challenge for the Welsh health service. Professor Jon Barry is the director in Wales of the Royal College of Surgeons of England.
"There is a massive issue with the type of surgery where people go abroad," he told WalesOnline. "In Swansea we are the one metabolic surgical unit in Wales so all of the more complicated procedures come to us and we're managing these patients who've gone to have surgery abroad and have seen complications."
Many have suggested pouring money into the private sector to try and clear the huge backlog of operations but this also presents issues. Professor Barry said: "Although people say the answer is private surgery, with private companies you tend to find over-investigation and over-treatment because it's financially rewarding to do so. This is not a durable solution to this problem.
"Moreover, you could get 40 private surgeons to do 200 surgeries but they will cherry pick 200 of the easiest gall bladders to do and all the difficult ones will be left for us again, that's generally what happens. We've experienced this before so essentially you end up with a shorter list which is just full of complicated cases."
This brings us to how we fix the long waiting lists. In the coming weeks WalesOnline will be assessing how to tackle wider issues in the Welsh NHS (and it is incredibly complicated) but when it comes to the orthopaedic waits (which are the most persistently high), The Royal College of Surgeons is calling for so-called "hubs" to be created.
"The key principle is that you have an uncoupling of the two different streams," said Prof Barry. "So resources can't just be shifted for a busy day. This is a sensitive subject, you know, we're not calling it to close down A&Es but we have to change the way that we work and it's got to be a regional solution. Orthopedics is is the elephant in the room here, because we've got, I think, 100,000 people on some form of orthopedic waiting list."
The idea behind hubs is that if you have a separate ringfenced area of hospitals (or separate sites all together) then this will allow them to just focus on one procedure. This will be more productive which will mean that the backlog can be worked through more quickly.
Prof Barry said: "Take Morriston Hospital where the bulk of my work is: we've got colleagues of mine who are doing super tertiary services there. So things like pelvic oncology surgeons, pancreatic surgeons and whatnot. We have an elective ward where the patients come in, but if you've got 20 ambulances waiting outside and it looks like an ambulance graveyard outside the hospital you can't get patients in.
"That is why what we are calling for is the key principle that we need to see developed is this regional work of developing elective surgical hubs and leaving the emergency units to deal with the emergency patients."
Now clearly this has its own issues. There is a staffing crisis in the Welsh NHS and you can't have a situation where there is a five-car pile-up on the M4 but all the available staff are away replacing hips. However, the College believes that if a proper regional approach is adopted it could work. This would involve real impetus from the Welsh Government to succeed and given that surgeons have been calling for this in some form since 2020 it remains to be seen if they adopt it.
It isn't just surgeons who are calling for this. Mary Cowern at the charity Versus Arthritis told WalesOnline: "Long waits are destroying the lives of people with arthritis in Wales who desperately need joint replacement surgery. These are very efficient operations that can greatly improve someone's mobility, overall health and quality of life.
"It's heart breaking that some people are dying whilst they wait for this life-changing surgery, probably spending their last years of life disabled with terrible pain. People with arthritis often struggle to function, are unable to work, and experience declining physical and mental health while they wait. Like Karen, David and Rhiannon, the pain forces some to find the money for private healthcare and end the agony.
"Cymru Versus Arthritis has been calling for the Welsh Government to develop regional elective surgical hubs to provide a robust, long term solution that brings down waiting times, meets demand and is protected from winter and other external pressures. This has to be a priority. People with arthritis cannot and should not pay the price of surgery delays any longer.”
WalesOnline has previously put this to the head of the NHS in Wales Judith Paget, see the interview here, and she told us there is work going on to look for such opportunities. Any progress on that front can't come fast enough for those who have been waiting years in pain for some hope.
