Long waiting times for treatment are having a “devastating” effect on some patients and their families, according to patient watchdogs.
The Board of Community Health Councils (CHCs) in Wales listened to patient experiences.
Issues range from mental health problems and family breakdown to long-term reliance on pain killers.
The Welsh Government acknowledged some patients had been waiting longer than was acceptable.
The report said current waiting times targets were “not meaningful”.
“As they stand, they are not providing assurance to the public nor driving sustained improvement,” said the board.
It said the failure to meet targets “has become an accepted norm”.
The new report is a pull-together of patient experiences.
Here are some of the issues they found:
- Coping with pain while waiting – and even long waiting lists for pain management clinics.
- Mobility – the inability to carry out day-to-day activities was a major issue
- Loneliness and mental health – some said they feel “powerless and distressed” by waits of 100 weeks
- Private treatment – intolerable levels of pain and mobility problems lead some people to pay for private treatment they can ill-afford.
- Loss of dignity – relying on others for intimate personal care and concern over appearance.
- Relationships – affects moods and ability to help with childcare or enjoy aspects of family life.
- Work – younger people waiting for surgery can feel an impact on careers, while sickness benefits do not take into account waiting times.
- Other issues – include cancelling holidays, getting physically worse while untreated, lack of communication and having to negotiate different NHS departments.
- Source: Our Lives Are On Hold – Board of Community Heath Councils in Wales.
There are currently 420,000 patients waiting for treatment in Wales.
Referral to treatment performance improved slightly last month but there are still more than 19,000 (4.5%) who have been waiting more than nine months and around 8% of patients have been waiting between six and nine months.
Nearly half of the longest waits are orthopaedic and trauma patients.
The Welsh Government said progress was being made on waiting times and “this compares favourably with the trend in England” where numbers on the waiting list in February were 3% higher than the previous year and the longest waits are at the highest level ever.
CASE STUDY: ‘Extremely frustrating’ wait for orthopaedic surgery
This 65-year-old patient – who needs to walk using sticks – has been waiting for a knee replacement since the summer of 2016 and was warned there would be a 50-week wait.
“When I saw the consultant in June 2017 I was told that due to the ‘clean ward’ being closed for three months due to winter medical admissions, no joint replacement operations had been carried out during that period, resulting in the waiting time increasing to 90 weeks.
“I saw the consultant again in September 2017 and was advised that the waiting list had increased further to approximately 100 weeks, which means that it will be the summer of 2018 before I have my knee replacement – if I am lucky and the waiting list does not further increase!
“This is extremely frustrating, not only for myself and my family but also for the orthopaedic consultants. It concerns me greatly that I am having to wait another two years for an operation and in that time my situation is only going to deteriorate further, meaning taking increased pain relief medication, which in turn impacts on my quality of life.”
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The report concludes that patient stories should be a “powerful reminder” to those responsible for planning and delivering NHS services of the harm that can be caused by inactivity.
Mutale Merrill, chair of the Board of CHCs, said some of the stories were extremely distressing.
“The number of stories in this report equate to only a small proportion of the missed targets reported each month by the NHS in Wales,” she said.
“For those who told their stories, this measure is unlikely to hold much meaning. Instead, most people measured their wait in terms of the impact on their day to day life, their finances, their relationships, their careers and their independence.”
The Welsh Government said it had been open about the challenges faced by the NHS in Wales and acknowledged some patients had been waiting longer than is acceptable.
“We are working with health boards to make improvements and our investment in the Welsh NHS has never been higher,” said a spokesman.
Have you faced a long wait for treatment? Let us know.