How has the backlog impacted on your care or treatment? Share your experience with us

[PatientSafetyLearning Team]

Earlier this month we published a blog looking at some of the key patient safety issues faced by the healthcare system in tackling the care and treatment backlog created by the Covid-19 pandemic. We provided some examples of how this is impacting on the treatment of people with various health conditions, such as cancer, cardiovascular disease, and chronic health conditions.

We’re now asking for patients, carers, family members and friends to share their stories and experiences of this with us by commenting in the conversation below.* We’re looking for people to share with us:

• Experiences of care and treatment being impacted by the backlog and the consequences of this.
• Advice/guidance that has been given to manage any health concerns relating to delays in treatment.
• Advice/guidance that has been given on how to escalate concerns and how to keep healthcare professionals informed of changing health conditions.
• What more you think could be done to improve the experience for patients affected by the backlog.

Your insight will help inform our work in this area.

*You’ll need to be a hub member to comment, it’s quick and easy to do. You can sign up here.

[PatientSafetyLearning Team]

In this blog, retired Occupational Health Doctor, Clare Rayner draws on personal experience to illustrate the impact delayed surgery can have on a patient.

"The young girl is now unable to walk and there is a very real possibility that lengthy delays to her surgery will continue to lead to progressive disability."

A child left waiting for ‘urgent’ surgery, a blog by Clare Rayner

[HelenH]

Hi all,

I've a personal experience which I'll share, but it has to be un-attributable.

After 5 cancellations of surgery over the last 18 months (partly Covid, partly building maintenance and partly because there were no post surgery ICU beds available), my friend/family member was told that they were being referred to a specialist hospital, relatively nearby. No explanation was given as to whether this was a matter of clinical urgency, capacity or another factor. Within a few weeks, they were phoned up by the specialist hospital and told that the referral should never have been made and they were not accepting it. My friend/family member was then told that they had to go back to the referring hospital, tell them that the referral wasn't being accepted and that the surgery needed to be rescheduled. 

All of this information was presented in a manner of irritation that the specialist hospital had been inconvenienced. It was also made clear  that it was the patients' responsibility to communicate with the referring hospital and 'sort this mess out.' There was no suggestion that my friend/family member's GP might be involved and could/should be able to be supportive, nor was there any indication of what impact this could have on surgery waiting time and her deteriorating health.

This may have happened at any time, but we suspect that the huge backlog and capacity constraints have had an impact on the availability of treatment, clinical prioritisation and patient communication.

Is this an isolated incident?

Please share if you have an experience as a patient or member of staff trying to deliver safe and effective care.

[Steve Turner]

I have a family member who had a similar experience to the one you describe Helen.

This involved an urgent  tertiary referral that would have been bounced back to the patient had they not kept their own notes.

As he had the notes my relative was able to show copies of all the letters, scans, EEGs and reports that indicated the referral was potentially life saving.

In his case I believe his GP would have intervened, however the GP did not have all the notes and was missing a key echo-cardiogram, that showed definitively an urgent intervention was needed.

My recommendation to all patients is to keep a copy of your notes in real-time. Insist that everything is copied to you. Most clinicians are more than happy to do this. (They all should be!) Then, if your referral goes in to a faceless 'referral management system', it is less likely  to be lost or the priority to be missed.

My worry is that this is fine for articulate, English speaking, reasonably IT literate, middle class white people like me. What about those who slip through the net? Who helps them? Who advocates for them? We may never hear of this.

 

 

 

 

[HelenH]

Sobering example and very good advice. Would you mind us turning this into a blog? @Patient Safety Learning

[Steve Turner]

That would be good.

I wonder how common experiences of bouncing, delayed or lost referrals are are. There is so much learning to be had. Including simple changes that can be made right now to improve communication and the safety of referral processes.

Thank you.