LEFT to “rot in a corner”, in “constant pain” and not wanting to “go on” and being forced to seek private cancer treatment as well as feelings of being “lied to” over delays and missed appointments.
Those are just some of the experiences highlighted in a report into Wales’ record NHS waiting lists and the stories of just some of the more than 688,000 people in Wales, who equal one in five of the population, who are waiting for treatment.
Among them is Jill Davies from Swansea who is waiting for hip surgery and the delays have been compounded, according to the Senedd Health Committee’s report, by four years of misdiagnosis and poor communication from the local health board.
The Labour majority committee, which has produced a critical report of the NHS waiting lists, wants health minister Eluned Morgan to set out what consideration the Labour government has given to commissioning private healthcare on an ongoing basis to help clear the backlog.
In January 2022, there were 688,836 people in Wales waiting to start treatment, which is a 51 per cent increase on March 2020.
Long waits are not unique to Wales, in England there are currently 6.1 million waiting for elective surgery, which is up from 4.4 million before the pandemic.
The committee sets out that patients who can so do are already paying for private treatment such as Jill Davies, who eventually had cheaper private surgery abroad.
“I was told that the waiting time was three years… most likely five,” she told the committee.
“It was at this point, and I don’t cry easily, that I burst into tears. I am 65 and can barely walk now, so what am I going to be like by the time I get an operation?
“The feeling I got then was that they were happy to leave me for three years and just let me rot away in the corner.”
Like others, whose anonymised accounts are included in the report released today, Davies highlighted not only the wait for treatment but a lack of communication as she struggled in agony, hoping for news of when her longed for operation could be performed.
“Communication was awful – there could be some easy communications in place to keep people updated, and maybe suggest some places for help, third sector organisations or support groups.
“I am used to communicating with people in my professional life. I just didn’t get anywhere when I tried. You felt dumped and for some people that is going to be a big problem. You gradually and gradually sink a little bit lower each time, left in utter limbo.”
The report is a glimpse into the heartache and even isolation felt by those in need of both non urgent and higher priority procedures.
An 83 year-old man, also waiting for hip surgery, described the impact on his quality of life: “My hopes and aspirations have taken a nosedive. I know my condition has deteriorated, I now have to walk across the house with a walking stick.
“The pain is constant and getting to the point where even making a cup of tea is a physical and mental effort. It might sound melodramatic, but I am 83 now and in two years time I will be 85—I don’t think I want to go on as I am. I am on my own, I am weary of it all—if I reach 85 and nothing will have been done then I don’t know if I will be able to go on.
“I have lost my confidence to go out of the door. It’s not just a physical problem that I have, it’s a mental one as well. I’m taking a step back from everything. I’m in here and the world is out there, and I get angry with myself, I get cross with the situation as it stands.”
A breast cancer patient told the committee how she was told a Covid meant she faced a four week delay for an appointment two weeks after diagnosis which then became six to eight weeks before a manager eventually told her it would be 12 weeks.
“My husband put his foot down and said we were going private,” the woman told a committee focus group.
A 21-year-old woman, who had first received support from the children’s and adolescent mental heath service while still in school but is now supported by adult services said she had noted how the NHS increasingly relies on third sector organisations.
She said she “felt sorry” for those first entering the service during the past two years and also spoke of frustration with delays and missed appointments, saying: “You end up getting promised referrals and then nothing happens. You end up thinking—why are they lying to you?”
The committee has now called for urgent help and support for those on waiting lists.
And while the six member committee has acknowledged the impact of Covid on waiting list it is also clear that the backlog was “a serious problem before the effect of Covid-19 on the health service”.
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Richard Pugh, of Macmillan Cancer Support in Wales, welcomed the report and said it demonstrated the need for specific action on cancer:
He said: "This report must now become a catalyst for change. It clearly demonstrates how Wales desperately needs the Welsh Government to bring forward a detailed and fully funded long term strategy for the future of cancer care – a plan like those that have already been committed to in Scotland, Northern Ireland and England."
Committee chair, the Conservative MS Russel George, said: “The equivalent of one in five people in Wales are currently on a waiting list for diagnosis or treatment. That is a shocking statistic, with serious implications both for the performance of our health service and levels of ill health in Wales.
“Our Committee has heard harrowing stories behind the statistics. Individuals whose daily lives—and potentially those of their families, friends or carers—are being affected by delayed diagnosis or care. People experience pain, distress, discomfort and anxiety and their needs may also become more complex.”
He highlighted aggravating factors such as the cost of living, an inability for those waiting for treatment to carry out caring responsibilities they may have, and the risk conditions will get worse and require emergency treatment.
The committee, its chair said, wants to see patients treated with greater respect but also for the Welsh Government to aim to do more than return to the situation as was before Covid, when long waits were still a common feature.
“It is time for a post-pandemic reset, which doesn’t aim to return to where we were in March 2020, but instead looks to the future, with a renewed focus on innovation, on genuine and sustainable service transformation, and on prevention and tackling health inequalities, so that no one is left behind.”
The Committee has outlined a series of recommendations to the Welsh Government which includes a focus on communicating with patients and helping them to “wait well” and provide an update, this autumn, on how that is being done.
It also wants the government to work with health boards and community health councils, which represent patients’ interests, to assess how waiting lists are managed and share best practices.
The health minister, the report says, should require health boards routinely publish waiting times data by specialty and hospital.
Other recommendations relate to the NHS workforce, including training and previous suggestions on addressing staff shortages as well as steps the the government and NHS can take to help address health inequalities.
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