Waiting lists are inevitable. It's how we manage them that matters.

Over the last three months, we have heard from more than 2,500 people about their experiences, helping us to dig beneath the headlines and support the NHS to make good policy decisions on how best to manage waiting lists.

“This is not about just getting the total numbers of waiters down as quickly as possible or reducing overall waiting times. This is a human problem and we need to focus on managing waiting lists in a compassionate way.

What is waiting for care like?

While the overall length of time spent on lists and certainty that a procedure will go ahead are key to people’s experience, they are not the only factors that affect what it’s like waiting for care and their quality of life.

Communication

Many people told us that the amount of supporting information they were given while waiting for care was inadequate, especially in helping them manage their condition.

• In our self-selecting survey (likely to have a higher proportion of respondents with a negative experience), 58% said they received no information at all. A further 21% said the information the NHS provided them with was not good enough.
• Even in our nationally representative polling, conducted by YouGov, a disappointing 45% of people said they received no information or not enough whilst waiting.

We also found that lower-income respondents were even less likely to say they had received information. Where they did receive information they were more likely to say it was inaccessible or of limited use to them.

Interim support services

We asked people if they had received any more practical interim support, such as pain relief, physiotherapy or mental health support, whilst they waited for their hospital treatment.

Just 15% of those we surveyed said they had received some support, with 82% saying they didn’t receive any help at all. Not everyone surveyed will have needed support, but this is still surprisingly high.

Where people face long waits, it is precisely this interim support that can make the experience bearable.

Interim support also helps keep them well and gets them ready for surgery. Without it, people’s health can deteriorate significantly which has a devastating impact on patients and will cost the health and social care system in the long run.

Our recommendations

Fix the communications:

• Implement the guide to good communications.
• Put regular updates in place for patients and families so people don’t feel forgotten.
• Make it easy for patients to update the NHS when there are changes in their condition.
• Don’t force people to go through already burdened GP practices to seek updates on their treatment.
• Recruit admin staff to manage lists better.

Provide more support services:

• Use some of the money for the backlog to increase support for people while they wait, like specialist pain management, physiotherapy and mental health support.
• Work with Healthwatch and the voluntary sector to properly understand how the NHS could expand support services even more, to help people survive waiting.
• Where patients are offered quick treatment at specialist hubs, ensure no one is excluded from this option. This means providing transport and help with accommodation for carers and relatives.?

Structural recommendations:

• The Government should consider widening statutory sick pay thresholds to help those struggling to work due to longer than usual waits.
• Continue to provide dedicated funding for discharge processes to help get people out of hospital faster and with the right recuperation support, freeing up beds for new patients.
• Use the clinical review of standards to develop processes to limit anxiety for patients waiting in silence and provide better data for hospitals to manage demand.

Commenting on the research findings and the recommendations, Sir Robert Francis, Chair of Healthwatch England, said:

“The NHS is under huge pressure right now, but this research is a strong reminder that we cannot treat waiting lists as a mathematical problem.

“This is not about just getting the total numbers of waiters down as quickly as possible or reducing overall waiting times. This is a human problem and we need to focus on managing waiting lists in a compassionate way.

“People need to know that the NHS is open for business and will see them to work out what is wrong and get to them as quickly as possible. For cancer symptoms this will often mean a wait of less than two weeks, but other less urgent conditions will take longer. The key is making sure everyone comes forward and if you have to wait then the NHS and other services make it as bearable as possible.”

“The Government has put in significant extra resource to help the NHS tackle the backlog but the imminent recovery plan needs some bold new ideas too.

“A mix of more admin staff, better use of technology and investment in support services, such as physio and mental health support, would all go a long way to improving the experience of waiting. This, combined with more regular and personalised communication, will help the NHS ensure no one waiting for care feels lost or forgotten.”

What to find out more?

For more information about this research contact the policy team at?[email protected].?