PEOPLE across Wales waiting for NHS treatment are risking long-term reliance on painkillers, mental health problems, unemployment and family breakdown according to a new report on the impact of delayed treatment in Wales by the Board of Community Health Councils, published today (Thursday 10th May).
Prepared on behalf of the seven Community Health Councils (CHCs) inWales, ‘Our Lives on Hold’ reveals the alarming impact that waiting for treatment is having on a range of people of all ages across Wales; and calls on the Welsh Government to act to end long waits.
Hearing from people through advocacy services, engagement events and social and traditional media, the report puts forward the argument that reviewing performance simply against figures of Referral to Treatment Times (RTTs) against a set of targets described in weeks does not provide a picture of what it is like to wait for treatment and neither does it capture the wider and sometimes life changing impact on individuals, families and communities.
The report gathered feedback from people throughout Wales. Most people were living with pain, many with chronic long-term pain substantially affecting their quality of life.
For some people, long-term use of strong pain killers was a cause of concern. People worried about side effects, over reliance and reduced effectiveness. Long waiting times for many procedures coincided with long waiting times for Pain Management Clinics. Many respondents were also facing the frustrating scenario of not meeting the criteria for chronic pain management as there is a known and available surgical intervention that would address the problem completely.
Long waiting times also had an impact on many people’s mental health;with some reporting feelings of powerlessness and distress and experiencing waits of 100 weeks or more with no clear indication of how much longer they may need to wait. A continuing theme of the report saw people reporting a combination of decreased mobility, pain and ill- health that removed them from their usual activities and support networks and left them feeling isolated and lonely.
Similarly, many people waiting for treatment in Wales told CHCs they are carers themselves, with children, grandchildren, or a spouse who rely on them to provide care that they become unable to carry out.
This often had a financial impact on the entire family and for many respondents, money worries were a major concern. Not all those waiting for treatment were retired, with one respondent age just 25 and facing an 85 week wait for shoulder surgery and unable to work or develop their career like their peers.
With employee sickness benefit timescales not taking long NHS referral to treatment times into account, some people said they were facing great financial hardship. Intolerable levels of pain and mobility problems had also led to some people paying for private treatment even though they could ill-afford it.
Some patients were living in constant fear of their condition drastically worsening while waiting for treatment. One respondent living in South Wales was diagnosed with a brain aneurysm and referred to a hospital in Liverpool for follow up treatment, and at the time of the report was still waiting for the appointment. The respondent reported living with extreme anxiety, concerned that the aneurysm could rupture at any time.
Speaking about the report findings, Mutale Merrill, Chair of the Board of CHCs said:
“Some of the stories we heard as part of the collation of this report were extremely distressing. As well as the effects on people’sphysical and mental health, as well as their finances and employment, there are accounts of patients feeling a loss of dignity and having to rely on others to carry out intimate personal care because they can no longer do it for themselves.
“Others reported a breakdown in relationships or a feeling that their entire lives were on hold; a theme that carried through almost every storywe heard.”
Mutale Merrill continued:
“The number of stories in this report equate toonly a small proportion of the missed targets reported each month by the NHS in Wales.
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.
It is difficult to see how clear, long established targets on waiting times are meaningful to anyone. As they stand, they are not providing assurance to the public nor driving improvement.
The Welsh Government needs to look again at how it measures NHS performance.
“Responses to the recent White Paper “Services fit for the future” indicate wide-spread support for the introduction in Wales of a Duty of Quality.
We believe this provides a meaningful opportunity for decision makers to set out clearly and simply what quality means from a service user’s perspective. This must include recognising the harm done by inactivity as well as the benefits of timely care.”
