Sarah is 64, still working, is living with diagnoses of high blood pressure, type 2 diabetes and fibromyalgia.  Sarah first saw me nearly 3 years ago with a painful knee, we spent time talking about things she might try: pain killers, weight loss, physiotherapy or at least exercise to keep the muscles strong.  We diagnosed Osteoarthritis, we talked about the need to ideally delay surgery until the pain was impacting her lifestyle more, we talked about the fact that knee replacements have a finite lifespan and that the surgery is major with a significant recovery period.

18 months later and Sarah is struggling, her pain is impacting her ability to walk, to work, to sleep.  She’d lost a kilo or two initially but then regained it since she has become less active.  Her pain now means she can’t walk further than a few hundred metres, she has pain sitting down and the pain wakes her at night.  She did speak to the Physio direct service, she has done the exercises they suggested, she is taking the painkillers I recommended.

We agree to refer her through the MSK service – our referrals locally almost always go through a triage service, often being seen by a physio for input or for investigation prior to onwards referral to a Consultant to consider surgery.  The only time they wont go through the triage service is if they meet certain surgical threshold criteria: for example have spent at least 6 months trying to self manage, have tried to lose weight, have been advised to stop smoking, have undertaken some primary physiotherapy and are taking adequate analgesia and possibly tried a steroid injection.

Sarah meets the surgical thresholds and is referred on to see a local knee surgeon, he agrees to list her for surgery, but we are in the grip of the pandemic.  She is told that the waiting list is likely to be 12-18 months at least – possibly longer by the time she gets there.

Initially she feels delighted that she’s on the waiting list, Ok there is a wait but her knee is going to be sorted.  BUT a few weeks later Sarah phones me distraught:

“I need some much stronger painkillers Dr Lockyer, I think I’m going to have to retire.  How do I keep going all those months, I can’t walk further than the corner shop and I can’t sleep!  I can’t walk my Grandchildren to the park, the next few months will be horrible.  I’m gaining more weight because I can’t walk, my sugar levels have risen I’m sure and I’m dreading my next diabetic review.  The diabetic nurse is bound to threaten me with insulin now.  My blood pressure is higher too, I think I might need more pills for that.  Maybe I’ll delay my review appointment for a while to try and avoid more bad news, I hate taking so many pills – paracetamol every 4 hours, Ibuprofen every 8 hours and then the tablet to protect my tummy – in addition to my diabetic pills, my blood pressure pills and my statin….I feel so depressed.”

Left alone, I’ve seen patients get to their pre-operative assessment months later and just a couple of weeks prior to the date of their planned procedure not be deemed fit for surgery due to high blood sugars or high blood pressure.  Then they are sent back to the GP to be “sorted out” and are taken off the waiting list again and will be relisted once we have their other health conditions under control again.

Not all patients will be as restricted in their mobility as those awaiting joint replacement, but it’s important to recognise the threshold to be listed for joint replacement surgery means these patients have often already been self-managing their condition for some time, the thresholds mean their symptoms have had to deteriorate to the point they impact their lifestyle significantly.  These are not patients who are going to run a half marathon, but we know that if you are less active then you will decondition and lose muscle strength.  We know that feeling low and depressed can lead to poorer lifestyle choices in terms of diet, of exercise, of smoking and of alcohol consumption – all of which compounds the health impact by worsening other medical conditions.

If we can keep patients active, if we can keep them focussed on what they can do rather than what they can’t, if we can help boost their mood through activity and social connectedness; we can make a difference to their experience of waiting for surgery, to their health when they arrive for surgery, their recovery after surgery, and ultimately to their long term health and wellbeing.

It all started when my sister Ellen, who works in Arts and Culture, came back from a conference on Social Prescribing. She was bubbling with enthusiasm for the ideas she had heard discussed there. It just so happened that we had recently employed some social prescribers and health coaches in Meridian Primary Care Network. The two of us began thinking about how to make the best use of these new resources.

The papers at that time (as they are now) were full of stories of the increases in waiting times caused by changes to the ways hospitals were working due to the pandemic.  We were talking about how it feels to be a patient waiting for treatment, and what we might do to improve things.

I remembered reading an article about how Disney has spent millions employing “Imagineers” to figure out how to turn a day on which you spend 8 hours out of 9 queuing into an experience you love. Ellen and I agreed – we needed Imagineers for the NHS! We discovered there was a whole literature available on the Psychology of Waiting and did a quick review of the work in the field. Here is a link for those who want to read more about this field.

Another thread which informed our thinking when creating the project was the benefits of pre-habilitation, which organisations like Macmillian were finding in their work with their patients. In the month or so prior to surgery, they were encouraging people to get into the best physical and mental health they could be in. We started thinking about how this approach would benefit other patient groups.

Finally, we discussed the idea that that one of the big problems in getting patients to engage with social prescribers and health coaches is that we were often approaching patients at the wrong time… if you’ve been living with a well-controlled long-term condition like diabetes or asthma for 30 years and out of the blue you are contacted about a new course, there isn’t a huge motivation for taking advantage of the offer. If we offered people the chance to engage at the moment of referral,  might patients will be much more likely to engage?

Combining ideas from pre-habilitation, the psychology of waiting, and this idea about the moment of the referral is a sort of “teachable moment” we came up with Worthwhile Waiting.

Traditionally, the NHS give patients very little information about how to best utilise the time between GP referral and treatment/specialist intervention; they are given a passive waiting role. With this programme, we want to transform the patients’ role into an active one – one in which they are taking advantage of the opportunities available to them to ensure they are in the best possible physical and mental health while they wait.

We spent the next few months building a list of partner organisations and discussing the idea with them, we found that everyone we spoke to immediately understood the potential of the project. We also teamed up with Anglia Ruskin University to ensure a robust evaluation process for the project.

We are excited to be launching the programme to our patients. We hope that it makes the time spent waiting for treatment a little easier for everyone.